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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2nd Biopsy results

pmcki96ey
pmcki96ey
It is as we feared.... after 11 months of aggresive predisone(60mg-40mg), imuran(200mg), and ivig treatments(35 of them) the biopsy showed more damage then when he first started. The Dr is calling it "Drug Resistant Dermatomyositis". There should have at least been some signs of scar tissue that shows it is trying to repair itself.... needless to say he is upset. Our Rhemy has not told us what her game plan is now... she did mention going to John Hopkins but we cant afford that right now, we are fixing to lose our house!! I dont know what to say or do to help my husband right now. We are just feeling lost............
pmcki96ey
pmcki96ey
WIll they ever find something to stop this?? He is afraid it is just going to keep eating his muscles away till there is nothing left.....
deleted_user
deleted_user
If you cannot get to JH, your doctor can contact them, particularly LIsa Christopher STein. she is the best and is on the TMA board of directors...
The list of medical board members is here:
http://www.myositis.org/about-tma/medical-advisory-board

Print it out and give it to her...
Highlight Cristopher stien, she is the best and works often with very difficult to treat cases.

Likely Anti synthetase syndrome DM which is harder to treat but can be done. How are his lungs??

Blessings to you and your whole team of doctors and such...
Shawna
pmcki96ey
pmcki96ey
His lungs have lost a lot of volume/mass per the ct scans... he is negative for that Jo1 antibody which is good for that intirelstial(sp) lung issue i have been reading about but he still has severe shortness of breath and now he is having trouble swallowing causing him to choke on most of the foods he eats... this is starting to become scary! Thank you for the info on that Dr.... I will pass it to his Rheumy and see what she says....... do you know if they stay in the hospital there or do people like my hubby have to find an apartment or something?
trpt1
trpt1
Hi pmcki96ey, I do think Shawna's recommendation of contacting Dr. Lisa Christopher Stein at John Hopkins is an excellent direction.

I don't know if this will help, but it is worth a try... Idera Pharmaceuticals is coming out with a new compound called IMO-8400. Idera plans a later stage clinical trial for IMO-8400 for treatment of DM/PM. The website for Idera is www.iderapharma.com/ the phone is 617-679-5500, and fax is 617-679-5592. The company is located in Cambridge, Massachusetts. I was thinking it can not hurt to discuss your situation and see if they would be willing to try this developing med, or give you a recommendation of a medication that might help.

I hope this will help. Hang in there!
lexisgirl
lexisgirl
Have they ruled out IBM? IBM is usually resistant to the normal medications. I agree it would be worth it to find someone that specializes in Myositis. Dr Stein is fantastic. I've met her at the Myositis conferences.

I've not been to John Hopkins. What I have heard is you go there for a day or two where you see all the specialists and have all the tests he will need during that time. Then they work with your local doctor to coordinate your ongoing care. It can be tough to get an appointment but you can rally to find out what it takes. I think you need to send your medical records and such.

My understanding is IMO 8400 is for IBM...not DM and PM but I admit I haven't followed it closely.
trpt1
trpt1
Just an update, but the new IBM drug is BYM338 by Novartis. BYM 338 should be available in 2016. There is a study now underway at two locations - Neuromuscular Research Center in Phoenix, AZ. Contact K. Sivakumar. In addition, the Nerve & Muscle Center of Texas Houston, Tx 77030 Contact A. Shaibani.

Check the other centers listed on www.clinicaltrials.gov. You can also call 888-669-6682.

The new med current under trial for DM/PM is IMO-8400 by Idera Pharmaceuticals.
pmcki96ey
pmcki96ey
He has all the classic signs of DM.... even the purple scaley rash around his neck and face... so we just assumed it was DM

I will look into those trials trpt1..... what do we have to lose!!
Thanks for all the advice!