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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need some advice...

angie1026
angie1026
I had my CK levels checked yesterday. They are at 47. My rheumatologist wants me to stop my Medrol (I'm on 8 mg now-have been tapering due to stomach issues). I havent been on steroids very long (about 5 weeks) and have been tapering ever since week two when the stomach issues started.

My rheum does not think starting methotrexate will benefit me. He says the pain I am in now is from the damage that has been done and will just take time to improve. He says MTX is used to bring down CK levels and since mine are normal, I wont get any benefit fromit. My dermatologist wants me to go on Methotrexate for my rash. Which is getting a bit worse since the taper off the Medrol. It never went away completely but it was getting better and now is getting worse again. He says it may or may not help with my pain. ???

I seriously do not know what to do. Methotrexate is a serious drug. I dont know if I want to take it for a rash. Then again, this isnt exactly poison ivy or something. The rash is a symptom of my illness. In my opinion, this means the illness is still alive somewhere in my system.

I am so frustrated that my two specialists seem to have such different opinions on how to proceed. My Rheum just wants me to have my CK levels checked again in 2 weeks then again in 6 weeks. And to see where my pain level is at that time. My Derm would like to see me start the Metho asap.

My pain & fatigue seems to have gotten worse since we started tapering the Medrol but my CK numbers are still low. I dont quite understand that either. But we really didnt have much choice on tapering the Medrol since it is just ripping my stomach apart. Plus, since my CK levels were ok, my rheum was ok with the taper.

I just dont know what the heck to do. Any adive? Metho or not? I have to say I'm leaning towards trying it. In the injectable form, at a low dose and see how I do.
deleted_user
deleted_user
Im really surprised your in so much pain with the low CK levels..Im so sorry. Yes, methotraxate is a very serious drug. I know they prescribe it for many skin diseases to stop the rashes ( my friend takes it for Soriosis). I am currently prescribed it but am trying to go all natural as possible. Im tappering off Prednisone and am doing Pro-Biotics and Omega Oils for my body.
I just recently heard from another member here that the injections have FAR less side effects tho, so that may be the way to go. Please keep me posted on what you find out and what your decision is..my prayers are with you...
eddiesgal
eddiesgal
Wow, that's a lot to try to deal with. Are you also taking Plaquinil?
I always thought the methotrextrate was given in conjunction with the Prednisone to bring the disease under control. At this point in time I think I'd listen to your rheumy and skip the Methotrexate. That's just my humble opinion however I think I'd get a second opinion before making any major moves. Blessings, Kim
deleted_user
deleted_user
Angie i am on pred (trying once again to taper), plaquenil, metho and azathiropine. I have felt no benefits or side effects from the metho but my rheummy assures me it is working, my cpk levels are now back to normal but rising slightly as i taper the pred. My rash is very stubborn and i have had no relief from that at all.
With your tummy troubles i would be inclined to not try the metho, especially if you are only trying it in the hope it will help your rash. Remembering that metho can take up to 4 months to 'kick in' , thats a long time to submit your tummy more stress than it is already under.
Best wishes that you find something that works for you, i guess i must be lucky in that i have an iron cast stomach and none of these meds upset me but i feel for all of you that are not so lucky.

Take Care

Ness
deleted_user
deleted_user
Maybe you can have your rheumy and dermatologist talk to each other - that might help. I know I have a pulmologist and a rheumy and they talk to each other so they are on the same page. I don't take Metho. I have always had lower CK levels and have PM/ILD, at the conference it was stated that sometimes they do not just treat the CK number but how your feel. Hope that helps
Love Hugs and Prayers :-)
deleted_user
deleted_user
I've tried many different treatments throughout my diagnosis with DM. I have never been put on methotrexate, however. I have been curious about it, but the dr was very skeptical to put me on it. Have been on fluctuating doses of prednisone instead, and can't see how methotrexate side effects could be worse. :/
nanny1611
nanny1611
The ideal situation would be for your rheumy and derma to discuss your situation and come to an agreement on your care. However, if that's not possible, I'd probably lean toward the rheumy's decision, especially if he has experience with myositis. In the meantime, I'd be doing lots of research for myself, along with looking for natural things to do. As sdphotogirl mentioned, omega 3 oils are considered anti-inflammatory. Also tumeric/curcumin is anti-inflammatory. Best wishes to you.
angie1026
angie1026
Yes, I agree that the communication with ALL my doctors is lacking. That was one of the first things my rheumy came in yelling about. Yes, yelling. I felt like all he did the entire appointment was yell at me about things that were not even my fault. "Why isnt anyone communicating with me? I'm never seeing another patient from that dermatologist again! Why do you think you need methotrexate? What other meds has the dermatologist discussed with you?" It was a nightmare. I was warned by a couple of people that this particular rheumatolgoist was a bit flaky and he sure showed it at my last appointment. That is part of why I'm a bit hesitant to just follow what he is saying. He is saying to do nothing and just watch and wait. Regardless of my continuing problems. My dermatologist is very knowledgable about DM and treats many patients for it. He is very respected in the medical community here. He also listens to what I have to say and seems genuinely interested in how I am doing. I know I need to have a good rheum as well but I'm not sure it is this guy. I have to be comfortable asking questions and discussing things. He doesnt seem to be the one. Its hard to know how knowledgeable he is because his delivery just stinks!! It was all I could to not just burst into tears at the appointment. It was awful. I see the dermatologist again on Oct 20th to discuss the MTX more. I am having bloodwork done 2 days before my appointment to see where everything is. So we will see what happens next!!
nanny1611
nanny1611
Oh, no! Given that information, I think I would be seeking another rheumy or a neuro. I'll pray that you can find another doctor who listens and is knowledgeable, or that the derma will be able to handle your situation. Best wishes to you.
pluggingon
pluggingon
I can only tell you my experience, but don't want to frighten you. In 2006 I was having stomach problems. Don't know what meds caused it. Could have been Prednisone, MTX, or something else, since I'd been diagnosed with DM in "92 already, plus a host of additional autoimmune dseases as time went on. My primary doctor told me to take Pepsid and stuff like that. After 8 months things were so bad I finally got to see a gastroenterologist who found out that I had ulcers in my stomach, which translated into Non-Hodgkins Lymphoma. Chemo took care of it, but it was an experience I wish I could have avoided. Have been in remission ever since. But an early diagnosis would have been a blessing. As for MTX, The pills made me lose my hair, but the injections seem to have no side effects. Also, my gastroenterologist suggested I take Align to help the digestive system, and I did that for a long time. Have you not been given Prilosec for your stomach? And if you decide to take MTX, be sure to ask the doctor about taking Leucovorin. Twelve hours after the injection I take three pills of that. It negates all MTX side effects. And I take folic acid daily for the same purpose. I was on Medrol at times too. Actually, I prefer it to Prednisone. After I had tapered to 3 mg the tapering became more difficult. But I've been off it over 4 months now with no problems except fatigue and dizziness. Hope your CK stays normal and that your stomach pain and rash become resolved soon.
angie1026
angie1026
I have been on Zantac, Nexium, and am currently on Protonix. I am hopeful these stomach issues were/are caused by the steroid use and will resolve once the steroid is out of my system but naturally I am worried there could be something else going on in my stomach. I see the gi doc next friday. So I hope to get some answers on that part soon.
luckybee
luckybee
angie,
You could ask your dermatologist to refer you to a different rheumy who knows how to play well with others. That will take a lot of stress out of your life. Best wishes to you!
~Lucky
angie1026
angie1026
Ironically enough, it was my dermatologist who sent me to this rheumatologist. There is one other rheumatology group in town. I think I might call over there and just ask who has the most experience over there with DM patients and make an appointment.
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