Lupus Support Group

Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.

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Muscles & Bones
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+ bloodwork lots of symptoms, on IVIG and ?'s

bny806
bny806
Hello everyone.. I have been quite ill the past 2 years, since having my son.. I had many miscarriages and fertility problems and had to do heparin injections for both of my pregancies .. they found I was homozygous MTHFR c67tt.. Anyhow after he was born, I was so excited to be "done" with Dr's for a while.. joke was on me.. my body revolted!!

I got so weak all over I couldn't walk across the living room, hurt and hard to breath, my GI system went CRAZY, i felt like I was going to starve to death - i ate SOOOO much, but yet lost a ton of weight - I looked scary!! Then I got neuro symptoms - numbness, weakness of my muscles, hard time swallowing and mildly slurred speech..

My ANA was 1:860 speckled and heterogeneous i think it was.. My sjogrens was right on the border, and CRP/ck/ sed rate all normal.. Horrible joint pains, muscle weakness along with some atrophy too.. my life halted.. I got admitted into the hospital due to decreased pulmonary functions and they started IVIG-- the question of lupus was high, along with Myasthenia, CIDP/Guillian Barre etc.. my tests were all over the place, but none of them pointed to anything specific - the "lupus panel" was normal, with the exception of that ANA .. i did test positive for CMV (which I was negative for at the end of my sons pregnancy)

I am on plaquenil and did AWESOME when I was on that loading dose, but since they decreased it to maintence I feel like I used to.. I take IVIG every 2=3 weeks and that is what has saved my life.. but I feel like there is quite a bit of room for improvement. Walking up stairs etc is difficult..

When my symptoms flare - my skin and joints Kill.. I am so weak, heart races, short of breath, GI flare (increased GI motitilty along with increased hunger, but LUQ stomach pains)..

I have been strictly gluten free x 2 years.. in case it could be that..

Sound like lupus? Any thoughts? I am afraid since the plaquenil dosage isnt' working the next step is adding imuran, and being on an immuosuppresant scares me! Especially without a concrete diagnosis
tazesmom
tazesmom
if you have positive ana you do have a dx. you have auto immune disease sometimes the symptoms are all over the place so they can't put a name to exactly what you have but if you are still not feeling any better you should try a different medication to hopefully slow the progression of what ever you do have,hope you feel better ,Cindy
bny806
bny806
Cindy- Thanks so much for your reply!!! They thought maybe Sjogrens with neuro involvement- one of the sjogrens test was one point above the "normal".

Is an ANA of 1:860 pretty high?? They do think it is something autoimmune.. I also have livedo reticularis rash the rheumy noticed.. i have had it a long time - i thought it was normal! :0!!

The plaquenil was GREAT when I was on that loading dose... sad the maintenence dose is not helping as much.. I have another apt in April with the rheumy.. some days are tolerable, others are worriesome :(
deleted_user
deleted_user
Hi I take Imuran it didn't change me much but I do believe I felt better on it the only problem I had was I got a fungal mail infection and because of my lungs which was why I got it to begin with they temporarily took me off. But it was a help and I felt no I'll effects from it I know we are all different but I hope this helps a little.
deleted_user
deleted_user
That should have been nail got to get my kid to turn the autocorrect offer thinks it's funny when I text him and wired stuff shows up. Lol
bookkeeper64
bookkeeper64
I was on immuran for about 5 years and it worked for me. I had to get off of it because it was starting to not work and I was at the maximum dosage. I am now on Cellcept which is very expensive but it has put my lupus into a remission atleast from attacking my kidneys. The pain is still there but I have just accepted that is a part of my life that I have to deal with. If it becomes too unbearable, I will take tramadol and sleep. I find that tramadol doesn't make me as groggy the next day. Keep a positive attitude and hold your chin up as you are stronger than you ever thought you were.
bny806
bny806
Thank yall so much! I take plaquenil, and then the lyrica before bed, as I can't sleep due to the muscle/ creepy crawly sensations that wake me up ... It really amazes me how much it varies from day to day, but hey , I'll take it cause that means that there are good days! :)
deleted_user
deleted_user
Things have changed for me I will still say imuran does not seem to cause side effects for me. That said if u have lung issues please make sure u have no reason to be concerned about the Panther,study. It is a problem for IPF and without biopsy results u can't be sure the problems are severe and I believe should be taken into consideration with lung issues. Other than that I am reasonably sure it has a good purpose.
deleted_user
deleted_user
Have you be diagnosed with antiphosphidlipod syndrome (Hughes disease)? I have Lupus and this. Are you on blood thinners? When I first became ill I had every test imaginable. My doctor believed I had SLE but nothing was confirmed. At that time they found a blood clot in my leg and put me on blood thinners for six months. I felt just like you, I was out of work for 3 months, I couldn't climb steps, couldn't pick up my grandson, I was quite debilitated. I returned to work and was better but certainly not well. I KNEW something was really wrong and had myself convinced I had MS. Even my best friend and sisters throught I was "depressed". I knew I wasn't. I stopped coumindine and within 2 weeks I was in the hospital with a stroke and pulmanary embolism. I finally was diagnosed with SLE and Hughes disease. I know how frustrating it is. The symptoms change and sometimes 7 years after my diagnosis I feel like I'm crazy sometimes because one day its this and the next day its something else. I always wanted diffinitive answers to everything. SLE has forced me to deal with not always having answers. Difficult to accept. I've gone on and on but don't give up. You know your body. Research and continue to try and find an answer.