Latest update

So here I am once again. Again I am sorry for the space of time between posts but it has been quite a busy few months. I am currently struggling with my vision very much, so bear with me as the font here is just so tiny that it is hard to see.
I had my appointment with my neurologist a few days ago. I have learned that I have a demyelinating disease of the brain. As usual, I learned this by reading my report, not from the mouth of my doctor (which really is no surprise believe it or not) I Googled it to see exactly what it was. I will copy and paste my finding below....

A demyelinating disease is any condition that results in damage to the protective covering (myelin sheath) that surrounds nerve fibers in your brain and spinal cord. When the myelin sheath is damaged, nerve impulses slow or even stop, causing neurological problems.

Multiple sclerosisMultiple sclerosis (MS) is the most common demyelinating disease. In this disorder, your immune system attacks the myelin sheath or the cells that produce and maintain it. This causes inflammation and injury to the sheath and ultimately to the nerve fibers that it surrounds, and may result in multiple areas of scarring (sclerosis).

Other causesOther types of demyelinating disease and their causes include:

• Optic neuritis — inflammation of the optic nerve in one or both eyes
• Devic disease (neuromyelitis optica) — inflammation of the optic nerve and spinal cord
• Transverse myelitis — inflammation of the spinal cord
• Acute disseminated encephalomyelitis — inflammation of the brain and spinal cord
• Adrenoleukodystrophy and adrenomyeloneuropathy — rare, inherited metabolic disorders

MS and other demyelinating diseases may result in vision or hearing loss, headache, seizures, muscle spasms and weakness, loss of coordination, paralysis, and loss of sensation.
TreatmentNo cures exist for demyelinating diseases and their progression, and symptoms are different for everyone. Getting treatment early is important. Treatment focuses on:

• Minimizing the effects of the attacks
• Modifying the course of the disease
• Managing the symptoms

A variety of drug therapies are recommended depending on your specific disorder. These may include medications that decrease the frequency of new lesion formation. Strategies to treat symptoms include physical therapy, muscle relaxing drugs, and medications to reduce pain and fatigue. Talk with your doctor about the best course of treatment for your specific disorder.

Quite honestly....these things actually make sense to me.

I had my appointment today with my general practitioner and will be receiving the following referrals
-Opthamologist
-Pulmonologist
-Podiatrist
-Physical Therapist
_Ear Nose Throat

I have FINALLY agreed to a prescription for pain to help me sleep at night.

My appointment with my rheumatologist is next month.

Anyway....that's all I've got. I hope you are enjoying your holiday season.
PEACE :)
~Heidi

DJ's rheumatology appt.

I almost forgot, my little guy had his rheumatology appt. recently. I was a little shocked to hear the doctor say that since he does not have an elevated ANA then he doesn't have Lupus. I thought we were beyond that myth. My mother did not have an elevated ANA in the early years, nor did I. To this day, my ANA has jumped less than a handful of times but there is no doubt about my diagnosis. I told her this, she said our family is a (strange soup) of autoimmune activity and that with that in mind, she wasn't completely ruling it out. She said she just wasn't concerned at this time. But she did say she felt he should definately continue his follow up with his GI doctor. We will continue our photo journal of his symptoms as well, because it always seems to be that (like with the auto mechanic) his body is not doing what we made the appt for by the time we get to the appt. LOL. He seems a bit better lately with not throwing up at the smell of food etc. We eliminated artificial sweeteners from his diet, and fast food. (At least I did.) He's eating healthy at the Mama's house :) I am hating this (salmonella) issue with the chicken of the world lately!! I have had to turn to turkey lately because I am not willing to take the chance with the chicken! Ugh! It's hard to be healthy sometimes. Anyway....have a great day and we will talk at you again soon.

Peace, love and gentle hugs,
~Heidi & DJ

Seems run of the mill lately....

Good afternoon friends. I have been quite busy lately trying to prepare for the Lupus Walk and raise money for the cause, so I apologize for not posting in a while. Things are for the most part, the same. I live everyday with chronic pain in my right shoulder and right hip. The recent issue that has started up again is the back pain and this morning, I woke up with painful blisters all over the roof of my mouth again. It's been quite a while since I've had that symptom. I have had some stress lately which I know for a fact has a lot to do with the severity of my symptoms, so I've been trying to turn off the TV for hours a day and just soak in the peace and quiet (while the kids are a school.) Minimizing the stimuli in the room seems to help a little. It doesn't do anything for the shoulder and hip pain though. I have plantar fasciitis also and that causes even more difficulty walking. I can bear weight for maybe 20-25 minutes at a time without severe pain. But when the pain starts, there's no working up to it, it's bad from the get go! My shoulder pain seems to stretch down to my inner elbow bend now, and it also seems to radiate through my collar bone. Not cool....that's just all I need. I am a bit worried that I may not make the the entire walk this year. I am considering renting a wheelchair for that day. I will push it until I cannot walk anymore and then I will be pushed in it from there. These problems have dictated my activities for a while. I have missed out on the Halloween Haunts and the ghost houses and such with the kids this year. I don't believe I will be Trick-or-Treating this year either :(  It sucks because I still have a young child (7 yrs) who's life revolves around these activities. I have not been able to be a part of his life more often than not. I guess that's all for now, I will try and keep up the posting more often.

Gentle hugs,
~Heidi

Down and out

I am getting to the point where I feel I am just subscribing to the fact that I will never be well again. That's a crappy place to be, but I haven't seen anything to really help me believe there is any relief in sight.
 I know (as we all know) there is NO CURE for Lupus. However, do you know that many times, the benefit of the treatments for the symptoms just don't outweigh the risk? I am on so many medications right now, that I feel like I should at least be able to walk. Nope.
I am in so much pain in so many places on my body.....my hips are screaming! My right hip is gone, There "I know" is no cartilege left in it at all and I need a hip replacement.
My right shoulder hurts so bad I can't even move my right arm or lift it whatsoever. Scans of my shoulder show only mild degeneration of the joint. So why all the pain???? 
My back hurts so bad I can't stand up straight, sit for more than 10 minutes without pain or stand for longer than 20. Add to that, the fact that I have numbness from my left hip, halfway down my thigh to my knee. My arches of both my feet hurt so bad I can't stand on them for more than a few minutes at a time. Now, the bones in the top of my right foot are starting to swell up on me and they hurt.
I have temporal headaches that may or may not be caused by the lesions in my brain.
My throat burns constantly from the breakthrough acid reflux I have that is not being controlled by either of the TWO PPI's I'm taking.
My teeth hurt and are rotting due to lack of saliva, my eyes hurt from lack of tears and I cannot read well at all anymore without my glasses thanks to the Plaquenil.
 I have sores in my nose, in my mouth and in my ears. Not to mention the sores all over my scalp that you cannot see thanks to my hair.
My skin flakes on my face and head, but it's not dry flakes, it's sticky, plaque like scales that seep when they are scratched off. They itch and burn!
I'm sure that much of this is realative to the medications I am taking, but I don't know what else to do.
I am only 39 years old and I need to live for my kids because I am all they have left in the world.
I cannot walk around with my kids anymore, I had myself all psyched up to go to Halloween Haunt with my boys and guess what!? I had to go lay in the van while they went through the ghost houses. There were no wheelchairs close to where I was and I didn't want to be the "party pooper" so I walked back to the car alone and laid there and cried silently. Seems I do that a lot lately. I just don't know how much more of this I can take. I have had to take pain meds lately and I cannot wake up in the morning when I do. There has got to be a better way. It's dangerous for me to sit for long but I can't walk! What am I supposed to do?
It hurts so bad.
~H
2163

Can I please get a break?!

Today was my rheumatology appt. My doctor increased my Imuran and then sent me off to the hospital for an Xray of my hips. This was because of the excruciating pain I've had in my hips and shoulder lately. Unfortunately, through this I learned that I have Osteoarthritis in my hips and my right hip took the brunt of the damage. I have no cartilege left between the ball joint and the socket. I am grinding bone on bone. Now...I will need a hip replacement. Not cool for a 39 year old mom of young children. Boy.....someone really wants to take me out!

So boned.........

SHORT AND SWEET

Couldn't take it anymore. Those who know me, know that I don't take steroids. I gave in on Thursday. I have never in my life experienced this kind of pain. RIGHT ARM COMPLETELY USELESS, dragging my right leg because my hip won't allow me to lift it. The weight of my arm and leg is just too much for the joints to even support. I was in hysterics! I was crying uncontrollably and begged Joe to drive me to my rheumatologist's office. When we got there we learned that no doctors were in that day and I just broke down crying to where the office lady took me in the back and gave me a steroid injection. (She gave me double the normal dose because she said I was in such bad shape!) Anyway....took the edge off but i'm still destroyed. If I wear a sling to support my right arm, then it has to drape across the other arm/shoulder which will annoy the nerves and muscles in that shoulder and then I will have issues with both arms! I can't use crutches or a walker to help with my hip cause I can't bear any weight with my right arm. I am so screwed! Why with all the meds am I getting worse????? God help me!

~Heidi

Unbelievable response from my G.P.

It's bad enough having to go through this horrible pain day in and day out. But to have a Doctor who acts like he doesn't really believe that what's happening to you is real, and then not return calls and constantly push out and reschedule my appts. it's just wearing on my spirit and draining my heart of any fight that's left in me.
I scheduled this appt. with him months ago, and his office has called and rescheduled it four times! This last time, they had no dates available for a reschedule! Now what right? So I call and leave a voicemail specifically for him (on his personal voicemail) explaining that I had been in the hospital and that the ER doctor told me that my clot potential was high and that I needed to get in to see him right away. I explained that it's extremely troublesome to try to schedule an emergency appt with him and not get to see him for months. I could be dead by the time I get in to see him for crying out loud!!
I don't hear from him for weeks! Then, when he does call me back, it's at 10:45 pm and he goes into a rant about how I need to stop or "slow down" on all the sports and "athletic teams" I have been involved with all summer. WTH??? I said WHAT ARE YOU TALKING ABOUT!? DO YOU EVEN KNOW WHO YOU ARE TALKING TO? He continued that I had told him I was very athletic yada yada yada. Oh my gosh! Really? I would NEVER have told you that because that would be a LIE! He asked me what did I go to the hospital for and I told him I was having trouble breathing and that the pain in my right arm was excruciating so they thought I had another P.E. which thank God I didn't HOWEVER, my D-dimer test was high. He then said "Oh, so we should do an X-ray of your shoulder then since you're having numbness and tingling. HUH??? I never said I had numbness and tingling! I told him, I am NOT having numbness and tingling, just sheer unrelenting pain! Sharp deep pain that's completely debilitating. I asked him (Does an X-ray show muscles and tendons?) He said no. So I said "Then what's the point of the X-ray? Obviously I don't have broken bones. I didn't injure myself.....so we should probably consider an MRI or ultrasound to look at the tissue and muscle etc. right?" He said "Oh yeah...that's what I meant, we should do an MRI to check the muscles and tendons because this seems like an orthopedic thing you've got going on here." UGH! Why does it seem like he got his MD from a cereal box???? I just wish that I had a Doctor who actually gave a crap about me! One who was concerned and wanted to help me to get better. Partner with me and my other specialists to HELP ME! I can't do this all by myself! Why can I not get an appointment with my doctor when I have an emergency? This is rediculous! I guarantee you that he is the sole reason I am having issue with Social Security too! He's probably told them that I compete in triathalons and decathalons and stuff! It's like he has NO IDEA who I am! I told him I need a referral for the pulmonologist and the MRI for my shoulder. He said I'd have it to pick up on Tuesday. We shall see huh? I will be calling the site manager of the clinic Mrs. Clark and arranging an appt. to meet with her because she was supposed to have changed my G.P. way back when I had my P.E. and he screwed up on my blood thinners and results of my PT INR. I need answers!
~Heidi

Basic "forget about it's"

I am now at the point where regular, run of the mill activities such as folding laundry, pushing a grocery cart, combing or washing my hair or cooking is almost impossible. THE PAIN IN MY SHOULDER IS SO HORRIFIC I LITERALLY WOULDN'T MIND HACKING IT OFF! I wish I knew why it was so bad. I have been on immunosupressants and anti-inflammatories far too long to allow for this kind of breakthrough pain. I've iced it for two days now and NOTHING!!! Not to mention the added 40mg a day in prednisone for 5 days after my release from the hospital just over a week ago. That alone should have at least taken the proverbial "edge off" of the pain. But no. I can't do AYTHING! I am right handed...this is completely debilitating! What else is there? Now, I'm noticing that deep right hip pain is returning and causing problems with my ability to sit, stand and walk. God just let them find the cure for this please!!!

A whole new level of activity.

I went to the E.R. a few days ago because as I walked into Walmart to buy some thread, I became short of breath and had an almost panicked feeling that each breath would be the last. The air was thick, my chest heavy and I began to get dizzy. I left Walmart and sat in my car for a few before taking myself to the E.R. when I felt it was safe to do so. When being evaluated by the ER dept triage nurse, he asked if  had any other pain at which point I realized YES...yes I do. I had pain in the left side of my chest a few days earlier and had been having severe pain in my right shoulder for three days straight which was now unbearable. Well, this being the Hospital that admitted me with my P.E. a year ago June, they were taking no chances and he said "I'm really concerned that you may have another clot my dear." So they took me straight back, inserted a slurpee straw sized I.V. into my arm and took my blood for a D-dimer test. Then it was off to the CT machine for me. In a nutshell, they found no clots in my lungs (Thank you God!) but, my D-dimer came back elevated .

D-dimer concentration may be determined by a blood test to help diagnose thrombosis. Since its introduction in the 1990s, it has become an important test performed in patients suspected of thrombotic disorders. While a negative result practically rules out thrombosis, a positive result can indicate thrombosis but does not rule out other potential causes. Its main use, therefore, is to exclude thromboembolic disease where the probability is low. In addition, it is used in the diagnosis of the blood disorder disseminated intravascular coagulation.^[1]

D-dimers are not normally present in human blood plasma, except when the coagulation system has been activated, for instance because of the presence of thrombosis or disseminated intravascular coagulation. The D-dimer assay depends on the binding of a monoclonal antibody to a particular epitope on the D-dimer fragment.

In short, the ER doc said that he'd almost put money on me having "that clotting condition" that Lupus Patients often develope. GREAT! My rheumy tested me for APS and I was negative! But is that th same thing?

They gave me a horses dose of steroid injection, a breathing treatment, a shot of dilaudid for my shoulder pain and that was that. They sent me home with a prescription of 5 days taper of prednisone and Oxycodone so I may sleep. Yeah right!  Well, if my shoulder pain had been related to my inflammatory condition whatsoever, the steroids or the many anti-inflammatory drugs I am on (Imuran, Plaquenil etc) would have knocked out the pain and helped me function. BUT...I have no use of my arm at all. It hurts so bad you can't even touch it! Now, here I sit at 1:00 am unable to sleep with a fever of 99.4 degrees. My breathing is still not good though my oxygen sat showed normal (which I totally don't understand) and now I'm running a fever? Hmmm....Autoimmune fever should've been knocked out by the prednisone as well. IDK. But I've got a real bad feeling about this. I'm at the mercy of the doctors and that terrifies me!

Imuran is not working but damaging my liver I guess.....

So, I guess soon enough it will be back to the drawing board. I received my lab results today from my July 5th draw and once again (Just like with the Methotrexate,) my ALT (SGPT) or "liver enzymes" are HIGH, Billirubin is lowest side of range and SGOT is highest side of range. When discussing the next step with my rheumy last, he said the next would be Cytoxin infusions. Nice :(  So, I have to call him tomorrow morning to get a stat lab for re-check and discuss future plans I guess. I was already increased due to ineffectiveness, and now i'm in excrutiating pain all over...(back, hips, tail bone, collar bone, shoulders, neck, head, hands, feet) and I can't sleep! In short, I feel like i've been hit by a Mac truck.  Not happy. Tired of trial and error all the time. Oh...and today is my birthday......yippeee :'(

~Heidi

Lab results for DJ (I'm quite worried at this point)

SO, we got DJ's lab results back today. I would be lying if I said I wasn't worried. So last visit, we learned that he was anemic. Now re-tested for the anemia, he is borderline. Here are the new findings that are out of range.
Potassium - ref range 3.8 to 5.1  (He is LOW at 3.6)
CH Compliment Total 50 (marker of inflammation) (He is HIGH at 60)
Cholesterol Total - ref range 125-170 (He is High at 173)
Triglycerides - ref range 30-104 (He is very high at 136)
Hematocrit - ref range 35-45 (He is low at 34.4)

His doctor feels it is imperative that he be seen by a Gastroenterologist ASAP. Her suspicion is a G.I. condition of autoimmune origin. She sent the referral for authorization today. My worry comes from a place I didn't even understand until the puzzle (that is Lupus) began to fit together for me after watching Momma suffer with it. Anemia is a common condition amongst Lupus patients, as is an elevated CH Compliment (inflammatory condition) as is elevated triglycerides (in Lupus Nephritis patients) aa is low Potassium. Let's not forget the nausea and weight gain. DJ cannot smell food cooking (or very fragrant cooked food) without throwing up most of the time. He has been tiring easily, and he put on another 3lbs since last visit (2 weeks ago) to the doctor. He was already 24 lbs overweight, he is now almost 28 lbs over. He should weigh around 50 lbs. for his age and height. He is 77 lbs.
Something struck me yesterday, my best friend saw my son running around one day and did not recognize him. She thought "who is that chubby kid?" then noticed it was my son. She said (Oh my God Heidi, he looks swollen!) Then, yesterday (only a few weeks later,) she came over and said "Wow! He looks good today! He looks normal. Not all swollen up everywhere in his face.)
OH MY GOD! Are you kidding me? That is one of my main symptoms is my face swelling up all over. I never noticed it cause I see him every day. My poor baby. We gotta get to the bottom of this ASAP!

Post Neurology appt.

I am back from my Neuro appt. and from what I am being told, the white spots in my brain are most likely, Lupus Plaques. I do not present with the MRI of a person with MS, She said that many CNS (Central nervous system) Lupus patients do develope MS after a passage of time. This may mean that I have developed CNS Lupus now. I have already been dignosed with Systemic Lupus Eurythmatosis so this would be new.
I received a new prescription for Gabapentin or (Neurontin) now due to my tremors and involuntary jerking I experience with relaxing. It is also a mood stabilizer so that's a plus for me and the kids :) I am also being scheduled for an Eeg within the next few days to monitor for seizures. My vitamin D is low and my B12 is not where it should be so I may have an absorbtion issue. Both vitamins were increased but I will be taking the B12 as a sublingual suppliment now. Anyhoo...that's it for now, I will let you know if anything new comes up.
Gentle Hugs!
~Heidi

Never really works out......

I'm back, I went to my G.I. appt the other day only to be rejected because I needed a (prior auth or referral) from my General Practitioner.  My rheumatologists office told me that they called and checked and I did not need one for this. I had the appt. because I was in the E.R. with serious stomach pain and reflux issues. Prior knowledge says that I had peptic ulcers and Barrett's Esophagus (which is a pre-cancerous condition) brought on by prolonged untreated G.E.R.D. I have also had this burning spot in my gut that has been there for years. I describe it as someone slowly twisting a white hot poker through my abdomen back and forth. It's truly painful. I am nervous, and have been, because nobody has ever found the source of this pain. (Nobody has ever REALLY taken the time to look for it) is more like it. It is so precise that I can literally draw a circle around the pain with a pen! You would think that would be a good lead! So, in the E.R. they tell me that I need to get in to see my G.I. doctor ASAP because I have bleeding duodenal ulcers (that's new) and they could have been caused by my meds and made worse by stress. No big suprise there... I told my rheumatologist this at my appt with him a few days later and he stressed the importance of that appt. I reminded him how difficult it is to get a referral from my primary and he said WE WILL GO ABOVE HIM AND WRITE THE REFERRAL! I stood there as they called and they turned around and said that they were told I didn't need one for this. COOL! So I show up and get rejected. The assistant at the G.I.'s office was MAD! She called my primary and told them it was an emergency and that I had actively bleeding ulcers and was ordered to this appointment by the E.R. and they still said I'd have to make an appt. to see my primary (which had no available appts until August) and then he would write the referral and send it to the referrals dept for processing (which takes anywhere from two to six months!!) By then I could be DEAD! Are you kidding me?? Here's where I truly see that the medical clinics are in it for the MONEY! He wants his money for the referral, he's not concerned about my health and well being. Sorry about the venting....I'm just seriously frustrated about this!
ANYWAY......today is my Neurology appt to find out what the "white spots" on my brain MRI mean for me going forward and learn what the next step is. I don't know if I will come away from this with a diagnosis or not, we shall see. All I know is that Neurologists like to do lumbar punctures (spinals) and she is getting NO WHERE NEAR MY SPINE! Not unless she can knock me out first. Two things I have trouble with in this whole battle (Lumbar pokes and blood gasses) NOT HAPPENING! So wish me luck today. OH, I need to try and remember to tell her about my slurred speech yesterday! A lady down the hall from me heard it and she just lost her grand daughter to Lupus. She said, her grand daughter also had that problem from time to time, It goes along with the brain fog they talk about but it's really caused by the meds. HOPEFULLY that's all. Peace, love and Gentle Hugs!
~Heidi

Oh! I just remembered.... (Brain farts prevail)

First, I have a correction, tomorrows appointment is with my Gastroenterologist and my appointment with my Neurologist is on Thursday.

The reason for tomorrows appointment is that apparently, I have worsening issues with my GI tract. I was in the ER on the 28th of June with severe acid reflux and pain (constant burping) couldn't stop. The Protonix I've taken for several years no longer working. I was told after labs that it appears I have actively bleeding ulcers. They put me on Sucralfate (1gm tablets) that I must chew up 30 minutes prior to meals and before bed, to coat the areas of the ulcers and stop the bleeding. I was also given Butalbital for pain and Omeprazole (20mg tablets) in place of the Pantoprazole or (Protonix) since it no longer seems to work. The appointment tomorrow is a consult for another scope that must be done to check on the status of my condition and see if the "Barrett's Esophagus" has worstened since that is a pre-cancerous condition, it is important to know this. In case I did not mention before, the Imuran that I am taking is known for causing cancer, therefore, we must keep a close eye on these symptoms to be ahead of the game.

Thursday's appointment with the Neurologist is due to the white spots that were discovered in my brain MRI that I had last month. We must now discuss what this means and what tests I must now go through to decipher the symptoms and whether or not they are all related. Meanwhile, back at the bat cave.....I continue to suffer exhausting memory issues. I do believe that I am starting to have issues with anxiety and depression as a result of all of this. I wonder if that is why I am so tired. Anyway, once again....Gentle Hugs~ Heidi

DJ's battle continued.....

So, if you follow my Blog, you already know that my little guy "DJ" who is now seven years old, has had a battle of his own going on for a while now. We just never had any answers as to why he may struggle the way that he does. Well, we have begun the process of getting to the bottom of what is happening to our little guy.

DJ has had a history of rogue fevers with no source and general malaise. He gets sick a lot, ear infections, colds, flu's sore throats, persistent tummy troubles and he vomits at the smell of food. He also wears the typical Malar (butterfly) rash across his face that his Grandma wore and that I sport on a daily basis. My rheumatologist has seen what DJ has gone through symptomatically, and was urgently urging me to get him to a pediatric rheumatologist ASAP. He was recently diagnosed with ADHD because of his extremely short attention span and his inability to retain some information in school. He will begin the second grade with an IEP.

DJ had his initial Dr. appointment on Friday where he had a test come back that he is anemic. His Pediatrician then ordered a battery of other tests be done to check him for autoimmune disease and to find the source of his anemia. Anemia is very common amongst people with Lupus, this is of concern to me. I am hoping it's just due to inadequate iron intake in his diet. My son can put away a steak like nobody's business. He has put on quite a bit of weight over the last year and is 24 lbs. overweight. He should be 50 lbs. and yet he is 74. He appears swollen. He did his labs like a little pro. I think it helps that he has been with me during the lions share of my labs. I took mine first that day. Now it is a waiting game. We await the results of all the blood work to see if there are any answers to his troubles. I will come back to the Blogoshere and let you all know what we find when we find out, and also after my neurology appointment tomorrow.

Gentle Hugs~ Heidi

Catching up....

Legs covered in calamine lotion due to a severe, painful itchy rash I suffered after exposure to the sun.

A flat flaky spot on my hand raised up after exposure to the sun. It hurt like a bruise.

swelling and drooping on the right side of my face upon waking up.

Full facial swelling including my nose. The swelling occurs so often that I have permanent creases next to the right of my nose and above my eyes.

 

I know it's been a while since my last post, but I suppose it's because it's been a bit uneventful for me in comparison to my children. My oldest child and only daughter, graduated from High School on the 19th of June. My middle child and oldest son Aaron is now an eigth grader and my youngest "DJ" is a big second grader now. Yay for all my babies!

As for me, I completed one whole month of Imuran treatment (100mg doses) without much ado (or no side effects.) I continue to suffer with the "Angio Edema" in my face and even began to see more swelling in my left ankle/foot. I have pretty severe back pain now, and what seem to be never ending charlie horses in my right leg. To top that off, my right foot is losing it's battle with whatever has been ailing it. I litterally lie in tears over the pain in my right foot. It seems to be the arch but I had an injury to the tiny bones on the top of my foot years ago, so not sure if that has anything to do with it. I do believe at this point that with everything I go through, my foot is what will be the cause for need of a wheelchair first. As it stands, I can only bear weight on my foot for ten to fifteen minutes at a time without being in excruciating pain. I am starting to notice increased pain in my hips and the muscles of my thighs now, and after a long period of time, my right shoulder seems to be giving in again. I move slowly and carefully to say the least.

Recently, about a week ago, my rheumatologist increased my Imuran to 150 mg. a day. I waited until after a camping trip (which I did not do well on) to start the new dose which was Friday the fifth. Already, I am having nausea and came close to vomiting (which I never do.) I go through this each day, a few hours after taking the med. Today, I could not get up. I slept from 10:30 Saturday evening through 7:45 tonight. I just could not wake up. That's a bit worrisome for me. I will bring that up with my neurologist at tomorrows appointment. That's a bit more than I planned to say about myself, I have some sharing to do about my little guy "DJ" but will give him his own post.
Gentle Hugs~ Heidi

Day two Imuran treatment.

Well, i'm not "sick" but I had the hardest time waking up today! I just couldn't do it. It was like every limb on my body weighed a thousand lbs. My alarm went off at 7:00 am yet I couldn't get up untill 9:30! I had pretty bad acid indigestion yesterday and an upset stomach. Made it difficult to sit through my three hour parenting class. My right eye was swollen almost completely shut when I woke up this morning too! This seems to happen frequently. I wish I knew why every time something like this happens to me it always relates to the right side of my body. So distressing to NOT KNOW. Although, I must admitt that it's pretty heartwrenching to learn what actually IS wrong as well. I know that now. You think you want to know something....until you actually do. Then, well let's just say you can't un-learn something. Life.......C'est la vie.

I'm taking my second day of the Imuran now. Here's to positive thinking while dipping my second foot in the waters......

Heidi

Imuran treatment DAY ONE

It's day one of my Imuran treatment. I take two 50mg tablets each morning. I just took them so I suppose I will keep you posted as to how it affects me if at all. I hope I can handle this one and it doesn't land me in the hospital. Here is the possible effects of the drug.....I just saw that there could be devastating results if Imuran and Cytoxin are taken together. It can kill your liver! My doc's better not try to ADD cytoxin to my regimen while i'm on Imuran! That's what it sounded like he was going to do yesterday! Ugh. :(

Imuran Oral Warnings

Long-term use of azathioprine may infrequently increase your risk of developing certain types of cancer (e.g., skin cancer, lymphoma). This risk is higher in people using azathioprine after an organ transplant and in children/young adults being treated for certain bowel diseases (such as Crohn's disease, ulcerative colitis). You must be closely monitored by your doctor during treatment and regularly afterwards if your doctor stops treatment with this medication.Azathioprine may also cause serious (rarely fatal) blood disorders (decreased bone marrow function leading to anemia, low number of white blood cells and platelets). It can lower your body's ability to fight an infection.Keep all medical and laboratory appointments. Tell your doctor immediately if you develop any of the following signs: unusual skin changes, change in the appearance/size of moles, unusual growths/lumps, swollen glands, swollen or painful abdomen, unexplained weight loss, night sweats, unexplained itching, signs of infection (e.g., fever, persistent sore throat), easy bruising/bleeding, or unusual tiredness.

See also Warning section.
Remember that your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects. Many people using this medication do not have serious side effects.You may experience stomach/intestinal symptoms such as nausea, vomiting, diarrhea, or loss of appetite. If these effects persist or worsen, notify your doctor immediately. These symptoms may be reduced by taking the medication after meals. Talk to your doctor or pharmacist about other dosing advice that may also help with these symptoms.Although unlikely, more severe stomach/intestinal symptoms (e.g., severe nausea/vomiting/diarrhea, stomach/abdominal pain) may occur as part of a very serious allergic reaction. Seek immediate medical attention if you have severe stomach/intestinal symptoms or other symptoms of a serious allergic reaction which may include: fever, shaking chills, rash, itching/swelling (especially of the face/tongue/throat), severe dizziness, trouble breathing, cough, new or worsening joint/muscle aches, dark urine.Tell your doctor immediately if any of these unlikely but serious side effects occur: weakness, muscle loss, vision changes, hair loss, cold/numbness in the fingers, mouth sores, difficult/painful swallowing, greasy stools.Seek immediate medical attention if any of these rare but very serious side effects occur: yellowing eyes/skin, swelling/extra fluid around the abdomen, vomit that contains blood or looks like coffee grounds, black stools.This is not a complete list of possible side effects. If you notice other effects not listed above, contact your doctor or pharmacist.In the US -Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

Before taking azathioprine, tell your doctor or pharmacist if you are allergic to it, or if you have any other allergies. This product may contain inactive ingredients, which can cause allergic reactions or other problems. Talk to your pharmacist for more details.
Before using this medication, tell your doctor or pharmacist your medical history, especially of: kidney disease, liver disease, blood disorders, decreased bone marrow function, history of cancer (such as lymphoma), active infections, certain enzyme disorder (TPMT deficiency).Do not have immunizations/vaccinations without the consent of your doctor, and avoid contact with people who have recently received polio vaccine by mouth or flu vaccine inhaled through the nose.Since this medication can increase your risk of developing serious infections, wash your hands well to prevent the spread of infections. Avoid contact with people who have illnesses that may spread to others (e.g., flu, chickenpox).Use caution with sharp objects like safety razors or nail cutters, and avoid activities such as contact sports to lower the chance of getting cut, bruised, or injured.Kidney function declines as you grow older. This medication is removed by the kidneys. Therefore, the elderly may be more sensitive to the effects of this drug.This medication is not recommended for use during pregnancy. It may harm an unborn baby. Consult your doctor for more details. It is recommended that men and women use two effective forms of birth control (e.g., condoms, birth control pill) while taking this medication. However, this medication can decrease the effectiveness of intrauterine devices (IUDs). This can result in pregnancy. Talk to your doctor about other effective birth control choices.This medication passes into breast milk and may have undesirable effects on a nursing infant. Therefore, breast-feeding while using this drug is not recommended. Consult your doctor before breast-feeding.
 

Bad news today.

So this is not the kind of news a person wants to ever hear from their doctor. I (in a way) still feel like i'm dreaming. Like it's not real. The results of my MRI were abnormal. Apparently, I have white plaques through my frontal lobe. Most likely "Lupus" plaques, but my rheumatologist still does not like the word "Lupus" for me and so uses it rarely. He knows what it is, I think he's just giving me "time." I was told today, that I must start my Imuran treatment immediately and that I will most likely begin Cytoxin/Rituxin chemotherapy infusions very soon to slow the progression. Remember there is NO CURE (thanks to a lack of funding and awareness.) So this is merely an attempt at slowing the disease progression. HONESTLY...I'm scared guys...... I don't know how to feel and I'm just not prepared for this at all. As if you ever COULD BE. There's no operation to remove the problem....no antibiotic to fight it off. It's just there. It can't be reversed....the damage that is done cannot be repaired. It will just spread like a cancer through my brain until they can slow it with the chemo. Nevertheless, it will just continue....no matter how slow....until we find the cure. My kids are just babies. I'm not ready for this. There's so much I want to do still. it's affecting my memory, my ability to move freely, bathe, care for myself. It's horrible. I'm PISSED OFF! I have done my best on this planet to be a good person, to help others, to teach and to learn. I feel cheated right now, like i've been charged with a crime I did not committ! This is stealing my life from me and I'm ANGRY! I'm just so ANGRY!

Got my answer I guess. It's all part of Lupus. Just means I'm active in full flare.

The swollen legs and feet and shortness of breath are symptoms of Lupus activity.

Swelling.....should I worry?

Okie dokie....so I have been going through some pretty severe shoulder inflammation and pain as of late. So bad that I can't use my left arm. The right one aches but nothing like the left! Today, I noticed my left leg was swelling when I saw that my left foot was swollen so much you couldn't see my ankle. My right one seemed okay though. I've had some difficulty breathing with exertion. I wheeze pretty bad and breathe like I've been running just after walking from one point to another. Doesn't even have to be a long jaunt. Just from the living room to the bathroom! I wonder now if it's at all related. I have heard that fluid build up in and around the lungs and heart can be a factor in Lupus. I guess I need to start asking more questions. I am scared though, I must admitt. I don't want them to draw blood gasses on me so I'm afraid to tell them how I can't breathe. But at the same time, with my history of pulmonary embolism, I have to watch these signs carefully. Momma had several blood clots I guess, so it's not unheard of. This sucks :(  Wishing I could just have my life back.

Left ankle bone non existant!

Can push the fluid with my finger.

Right ankle bone visible.

Left leg/ankle -vs- right

foot swelling out of my shoe

swelling

Left leg is noticably bigger than right.

The Spoon Theory
by Christine Miserandino www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".

© 2003 by Christine Miserandino Butyoudontlooksick.com

The Day After.

Well, I decided yesterday morning that I was going to try to enjoy the day with my kids who wanted to go to Great America. So I took a Motrin before going to help with the pain and inflammation and we went. I wore SPF 50 sunscreen and long sleeves and my big floppy hat to keep the sun off my face and head. I did use a wheelchair off and on. I tried to walk as often as I could so I'd push it for about ten minutes at a time. It was good because I always had a soft place to rest out of the sun. Unfortunately, that really didn't matter. Today, I awoke to pain and swelling and this fiery pain on my face unlike anything I've experienced before. I reached up to rub my face and almost screamed out in pain. There are tiny blisters all over my face that burn and hurt so bad! Feels like third degree burns. I took pics of them. I've had two or three of them before, but never all over my face. I've also got spots of burning pain here and there on my body. Center of my back etc. I've had this before, I was told it's fibro.

Anyway, Not sure if this is Lupus related or not...so if anyone can tell me the answer to that (if they've ever experienced this) I would appreciate it greatly.

Gentle Hugs :)

Heidi

What's been goin on.....

Hello everyone, sorry it's been a few weeks but I have been uber busy with my daughters College app's and Scholarships lately. Let's see, my little guy DJ turned seven on the 29th of March. WooHoo! We took him to Great America since it was opening day. We all have passes so it was a cost effective birthday too :) It was pretty hot that day "which I wasn't expecting" so it was a rough day for me. I walked in and spent about 20 to 25 minutes on my feet before the pain hit. My legs and the arches of my feet were screaming! It was like my body was touched by the sun and it caused all my other symptoms to explode onto the scene! I couldn't really walk anymore. There was no way I was going to make it around the park so my Joe went to the front to get a wheelchair. They were out! I was in trouble. I spent the better part of the day on shady benches while everyone else ran off to play. Seems I remember the exact same thing happening to me at Disneyland a few years ago. I would've gone home, but it was my son's birthday and I didn't want to ruin it for him. My back was screaming by the time I got home and I had blisters on my face and chest. NICE. Now.... I went to the neurologist a two weeks ago and was told that I have Hashimoto's disease. I was not aware of this but apparently, she diagnosed me two years ago. Hmmph. So I have a memory test this week and a brain scan next week. She is looking for the reason for the memory loss, tremor and involuntary jerking. I started taking vitamin B12 and D3 also, as I apparently have a deficiency. Hopefully that helps something. My gen prac says that the foot pain i'm experiencing is plantar fasciitis. He prescribed me Diclofenac for pain (which I have yet to fill) and told me to get some good orthodics. Then two days ago, I went to my dermatology appointment and the doctor found a suspicious lump on my left cheek. I now have a hole just below my cheekbone, with nasty stitches sticking out. Bleck! Sooo...as you can tell. Life is good! :) I am alive and mobile so I guess I can't complain. It's just life as usual for now. Could be worse.

OH!! By the way!! Please click on the (My hero is my angel) thumbnail to the right of the blogs. It is a link to my teams WALK FOR LUPUS NOW website. Help us if you can! Be a miracle in a special way and help us survive this battle! Thank you!
ONE LOVE! ~Heidi

Itchy palm of left hand with small lumps

My left hand has been killing me for the last two days. It itches so bad and is a bit painful if heat is applied. Cold is the only thing (topically) that helps the itch and pain. There are several small lumps beneath the skin there. They are center of the palm just above the wrist. I finally started looking on the internet for others who suffer the same issue and lo and behold, it is also a symptom of Lupus! SLE to be exact. I would never have placed this as an autoimmune condition. Just had to post this because I was shocked to learn it was.

Alternately, I am dealing with serious foot pain as of late. It feels like the tendons are shrinking or shortening. When I walk, it feels like I am hyper extending them to the point they may snap like an old rubber band. It really hurts! My Momma had a similar condition where her arms curled in as did her hands and they had to be forced open because of how tight the ligaments were. She ended up with drop foot as well there in the end. So I know the risk of no treatment but I also know that if you don't use it, you lose it. My Mother was pretty much immobile. I am doing all I can to avoid that happening. Back to the foot thing, at the end of the day when I finally sit to relax, I get what feel like charlie horses in my feet and they hurt bad. My doctor gave me an anti-inflammatory pain reliever prescription called (Diclofenac). He said it's similar to Motrin. I looked it up and it has some frightening side effects and circulatory warnings for those who have suffered heart attack, stroke and prior blood clot. Sooo....that being said, and with my history of pulmonary embolism, I've decided not to fill this prescription but rather take Motrin instead since he said that was the treatment/result he was going for anyway.

I know, I can be a bit stubborn at times, but this is MY BODY that I have to live with for as long as I possibly can. I have no advocate but myself.. I would like to have my functions and ability to LIVE well for a long time. If I feel that a treatment may be a (benefit does not outweigh the risk) scenario....I just won't take it. That's where I'm at with the steroids too. I've done my best to incorporate multiple anti-inflammatory foods into my daily diet. I also try to exercise when I can. No matter how little, I do what I can each day. I also do not take pain medication unless I am dying!

Swelling/Edema and visual issues

I have been a little concerned as of late about the swelling that I've been experiencing. I dont know how to take it for sure because I've had bladder surgery and it may or may not have changed the way or frequency of urination. Also, I am just so darn swollen in the morning that some days I can't even open my eyes! It's pretty bad. I itch a lot on the neck and jaw line to the point I could literally rip it off! This morning I couldn't open my eyes and my skin felt tight and full and I had some mild chest pain. So I took my blood pressure. It was 116 over 80 with a pulse rate of 69. An hour later, after the swelling subsided a bit and the chest pain stopped, I took it again and it was my typical 107 over 67 with a pulse rate of 69. That's pretty significant if you consider that its 10 points + above the norm for me. I have also been experiencing some serious fatigue and right flank pain. Not sure what to make of that either, but I'm hoping that by keeping this blog, eventually we will find the significance. I will be discontinuing salt use for a while to see how it effects me. In the meantime, I have included images of the swelling I had this morning. The right side was more severe today than the left.

Blurred vision in both eyes. Unable to open fully

Couln't see from Right eye at all yet

 

Also developing red rash on face

Notice severity of Right side

Forcing eyes open

 

Forcing eyes WIDE open

 

I started looking up causes for swelling/edema in Lupus. All I could find had to do with the kidneys. Scary stuff!

Kidney Disease

Treatment and Therapy

Treatment for lupus nephritis must be individualized to the needs of the specific person. All of the following must be taken into consideration:

• the amount of edema (swelling)
• urine abnormalities
• amount of protein in the urine
• reduction of kidney function
• findings of the kidney biopsy.

Diuretic agents may be used to help eliminate excess fluid. Anti-hypertensive drugs can control increased blood pressure. Anticoagulation drugs are used in case of complications arising from blood clots. Changes in the diet can be made to control the intake of salt, proteins, and calories.

There are two major forms of drug therapy used for lupus nephritis: corticosteroids to control inflammation, and cytotoxic or immunosuppressive drugs to suppress the activity of the immune system.

Corticosteroids

Corticosteroids have been used to manage lupus nephritis for nearly forty years. Still, there are many unanswered questions as to exactly how they work and how they may be most effectively used.

High doses of corticosteroids, or even corticosteroids given for extended periods of time, may cause a number of side effects (some side effects can be lessened by a low calorie and low salt diet):

- increased appetite
- fluid retention with weight gain
- puffy face
- easy bruising
- moodiness
- loss of mineral from the bones
- cataracts
- thinning hair
- an increased risk of infection and diabetes.

• High doses of corticosteroids (taken orally or intravenously) are given until the lupus nephritis improves.
• The dose of corticosteroids is then slowly reduced under close watch of a physician to make certain that the nephritis doesn't worsen.

Cytotoxic or immunosuppressive drugs are generally regarded as standard treatment for people with serious lupus nephritis. These drugs block the function of the immune system, which in turn prevents further damage to the kidneys.

The most commonly used is cyclophosphamide (Cytoxan).

Immunosuppressives that are used less frequently include: azathioprine (Imuran), chlorambucil (Leukeran), and cyclosporine (Sandimmune or Neoral).

DJ's battle

This is DJ

 

He is my youngest of three children. DJ will be seven this month. He is a happy go lucky kid. Pretty easy to please most of the time. But DJ has a problem. He is always runnin fevers and busting out with rashes and sores on his mouth and face and in his nose. Could it be?

I will post some images of his issue, as my rheumatologist feels strongly that he is facing a Lupus diagnosis just with the  pics I showed him.

Malar Rash

The red rash across his cheeks and bridge of his nose is a tell tale Lupus sign.

Malar Rash

Body Rash

Malar Rash and Mouth Sores

Malar Rash and Mouth Sores

Rash

Rash

 

Mouth Sores

 

DJ has gotten these sores since he was barely a year old. They've gotten so bad they've traveled into his mouth and down his chin. They are very painful for him and he always runs a temp with them. Here are some more severe pics of the sores...

 

 

He also gets sores in his nose that hurt so bad you can't touch his nose at all. He wont even hug you for fear you will touch his nose. Poor guy. My mother got these as a small child as did I. We both had/have autoimmune disease. So what do you think? He's about to be tested, so I guess we will see. It needs to be soon because juvenile lupus can be bad if untreated.