Polymyositis & Dermatomyositis Support Group

Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.

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dugrab 04/25/2015

I was diagnosed with DM in Aug 2005. At the time I wasn't in a position to question the diagnosis, based on shoulder muscle biopsy, rash presentation and sky high CPK (I assume that was the basis of the diagnosis at the time). Extreme IV Prednisone dosage pushed down the CPK levels but Ive never regained the muscle or strength I lost then. Now I have alot of calcinosis going on in my body. From diag to now (10 yrs) Ive been treated with predinisone and plaquenil (and lots of other stuff I did not respond to or tolerate well) to treat DM.

A new DR did antibody blood tests:
JO-1 ANTIBODY,IGG,S
ANA WITH REFLEX TO LUPUS
MITOCHONDRIAL AB, M2

All those tests came back normal or negative. To me, that means I don't have DM/PM/Lupus... Or that my B-cells are not producing the antibodies normally noted with DM/PM/Lupus.

However, other tests that look for general inflammation issues came back positive or high:
CK
HIGH SENSITIVITY CRP
SEDIMENTATION RATE

All of those appear to indicate some sort of bad inflammation problem in my body, but none are specific enough to tell us why.

DR wants to put me on IV Rituxan, which as I understand it is used to kill b-cells that produce the bad antibodies associated with DM/PM/Lupus.

I want to tell the DR he's nuts. Blood tests show my b-cells are not producing the bad antibodies, why do we want to kill them off?

Or am I missing vital information...? And the question still begs, whats causing all the inflammation in my body (some infection (candidia) I have had thrush for 10 yrs since going on prednisone) or a liver problem? Does any of this spark any thoughts with you all?

dugrab 04/25/2015

Ursh, found this thread "Prednisone effects on antibody testing?"

I was happy to see negatives on all my antibody blood tests, but sounds like most of you think the tests arent that reliable and its unclear what effect the meds Im on have on these tests. I so wanted to be able to say something else is wrong with me other than DM :(

autumm 04/26/2015

Hi Dugrab. Not all of us will have these antibidies at diagnosis or develop them later. Scientists are doing a very good job finding out about them. With this information they are able to plan our treatment and have some idea of the disease process for those of us with antibodies. My Rheumatologist told me I had anti Jo at diagnosis and he based his treatment plan and management of my dusease on that. He has not mentioned it since, he did tell me last year that all my blood results were now normal but he continues the Azathioprine to suppress the anti Jo which I know will need long term suppression, I was lucky, I responded well to the first Meds tried for me, that is not the same for all of us sadly, some of us have to progress through other Meds and then to infusions like Rituxan. We are all different in how we present, what antibodies we have and how we respond to treatment. There is no one cure fir all. It is so important to have the right doctor, running the right tests and suggesting the right treatment on those results. It certainly looks as if your doctor knows what he/she are doing. I hope it all goes well for you.

trpt1 04/26/2015

Hi Dugrab, You need to thank your fast acting doctor for the RItuxan, and he certainly is not nuts. Autumn said it well that your doctor know what s/he is doing.

DM/PM goes through several autoantibodies as the disease progresses. Your doctor was looking for information as to where you are in the process.

Autoantibodies are not bad. Autoantibodies are friendly disease markers that tell the doctor what medications to reach for as the disease progresses. Autoantibodies are actually there to fight in the disease process too.

C-Reactive Protein and Sedimentation Rates tell the levels of inflammation. There is a wonderful website that will help you make some sense of these test scores:

Lab Tests Online: Patient Education On Blood, Urine, and...
http://labtestsonline.org/
Go to the search button on right and type in C-Reactive Protein and information will come up. You can look up any information on test scores and their meanings on that site.

I hope this helps.

Best Wishes.

lexisgirl 04/27/2015

Interesting question. I had a few antibody tests here locally and they came back negative. I went to Johns Hopkins in January for a consultation. They did a full Myositis panel. It all came back negative. They were very surprised and said it was indication that I have IBM. But I respond to medications so I am not sure that is all that true. There is a brand new test for IBM I am trying to get but I am struggling to find a lab to pull it for me. It is NT5C1A. You could check it out if you are interested.

Personally, I think they are still trying to figure Myositis out. I believe there are more than 3 types of Myositis and that is why we all are so different. They just haven't identified all the types yet. This disease is pretty rare and they are still working on learning about it and developing tools and protocols for doctors. It isn't an exact science.

If your doctor is recommending Rituxan, I would give it a go and see if it helps. Many people are getting positive responses from it. Be sure to check to make sure your insurance will cover it. It is not a cheap option. I was on Rituxan for cancer. My understanding is it doesn't kill B cells. It targets them so they act appropriately. In my cancer, it was used as a marker for the cancer that was a B cell cancer and made my immune system eliminate the cancer from the cell. It is molecular therapy.

I hope you find the answers you search for and even better, something that will help you feel better. I would be interested in following hour journey. We sound very similar.

trpt1 04/27/2015

Lexis, You bring up a good point about molecular therapy. DM, Lupus and several autoimmune disease have Epstein-Barr Virus gene 3 association. (See article below). I was wondering why molecular therapy that deals with both virus and microbial bacteria (particularly E. Coli that attaches to EPV) is not used as a DM/PM treatment? It would make sense to zap this issue earlier.

I was reading the article below. I noticed it mentioned, "the infection of B-cells possibly results in proliferation..." (yes, lets say it together... DUH!) Why isn't some type of molecular therapy done early in the process before B-cells get out of control? Any ideas?

Epstein-Barr Virus in Systemic Autoimmune Diseases www.hindawi.com/journals/jir/2013/535738/

nanny1611 04/27/2015

Here are a couple articles dealing with autoimmunity and viruses, one article about EBV and the other about Parvovirus B19. Both articles interested me, because when I first got sick my Parvovirus B19 was very high. But the rheumatologist told me that it wasn't anything to worry about. And then a few years later my current doctor found the EBV.
http://www.medpagetoday.com/Rheumatology/GeneralRheumatology/43797
http://rheumatology.oxfordjournals.org/content/40/2/152.long

deleted_user 05/01/2015

Dugrab, so sorry to say it is not that easy...
It is hard to get a diagnosis of Myositis, and many have no antibody... We have yet to find all of them, and no steroids do not make the antibodies go away, it is like being allergic to bee's, even with steroids we are still allergic to bee's.
The antibody can tell the doctor just how your immune system is allergic to your own tissue and fighting against yourself...

B cells are part of the immune system and they may be the ones making us so very weak and sick... some folks respond very well to Rituxan.

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