[jana]

I have a friend who was diagnosed with a positive blood test for AChR and clinical symptoms. I don't know if it was Modulating, Blinding, or Blocking -- she hasn't gotten her records, yet. She was started on IVIG and Cellcept -- already taking Prednisone for other things. Sometime later, she was given a SECOND blood test (not sure why) -- and it was negative. But, treatments continued. She has been having a bad reaction to IVIG -- so, was referred to a new neuro. This new neuro ordered more bloodwork and an RNS -- both were negative -- but, she is still on Cellcept and Prednisone. She has double vision, slurring, swallowing difficulty, fatigue.............classic MG symptoms.

My question --- is it possible to show up as NEGATIVE on bloodwork if you are on immunesuppressants like Cellcept? If so, can you tell me where I can find "proof" or give me links?

Thanks so MUCH!!

[AnnieB3]

Jana, Hi. I hope you've been doing okay. Glad to see you back here.

I don't have too much energy for searching right now but here are a few. The basic premise behind immunosuppression is to keep antibodies from forming so that they won't attack the NMJ, which I'm sure you already know. They are still looking into exactly how each drug works, or doesn't work, in people with MG.

http://www.macalester.edu/psychology...ppression.html

http://www.ncbi.nlm.nih.gov/pubmed/183592

This is a small study.

http://www.roche-trials.com/studyRes...Number=WX17798

In addition, CellCept patients showed a larger decline in AChR antibody titers (with median values of 8.00 nmol/L at Week 0 and 3.46 nmol/L at Week 36) compared to patients in the placebo group (with median values of 8.00 nmol/L at Week 0 and 7.61 nmol/L at Week 36); this difference suggests CellCept may play a role in decreasing circulating AChR antibody levels over the course of 36 weeks.

The bottom line is that, yes, after immunosuppression of any kind, AChR antibodies do disappear. At least in the circulating blood. And it all depends on how high someone's antibodies are to begin with. Unless they carve all of us open, they can't say for certain if an amount of them stay in the NMJ causing damage. I can't find any articles that call this antibody attack "fluid" or something that comes and goes. By that I mean do the antibodies "hang out" in the NMJ, causing more and more damage or do they "die off." Maybe someone else has the answer to that.

There are "tissue bound" antibodies and those that end up "circulating" in the blood.

I wish I had a better source for your friend. Sometimes it's more important to treat the disease right away, to save a patient, than to do a thorough diagnosis. And once you are on those big drugs, especially Pred, it's so hard to go off of them simply to have a test done.

The SFEMG goes negative too with those drugs, plus with Mestinon.

Did she have a bad reaction to the IVIG itself or regular side effects or the type of IVIG or the "delivery route?" I suppose they could try subcutaneous IVIG, in a hospital setting.

Google "immunosuppressive effects AChR antibodies" and searches like that to find more info.

Take care,

Annie

[jana]

Hi Annie!

I'm doing pretty good -- considering that it keeps on SNOWING here in Tennessee -- and we aren't supposed to GET much of the white stuff! Thanks for asking!!

My friend's kidneys started shutting down with the IVIG -- they caught it before too much damage was done, fortunately. She loved the IVIG -- it gave her so much energy.

Thank you SO much for this info. I have given her the link to this thread -- so she can come and see the info first-hand. I'm always bragging about how smart and knowledgeable you all are!

I hope that you feel better soon -- low energy is the pits.

[AnnieB3]

Jana, Has she been worked up for any kidney issues? Or liver issues? If not, she should. If IVIG was too much of a load for her kidneys, there could be an underlying health problem.

The Hizentra may be okay for her to do. Maybe a lower dose.

It's friggin' cold and snowy here too. This winter can go away now. We haven't been even near freezing since early December. The cold weather is tanking my MG.

I wish I had time for more "facts" for her.

Hope for an early spring!!!

Annie