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.
Is MTX for a specific condition in addtion to the myositis?
I was never on methotrexate, so I can't give you any info. Sorry about that. I'm sure other will offer advice.
@Kathleen
Each doctor who works with DM or PM patients seems to have his/her own system. Part of the answer depends upon a person's response to prednisone, or lack thereof. My doctor started me on prednisone and nothing else. We started to taper quickly. His goal was to get me down to 40 mg., which he said I would be on for a loooong time. He told me that as long as the prednisone was working that he wouldn't add anything else. But he said at some point the prednisone would become less or non-effective, and that he would start me on another medication at that time. And when that medication no longer helped, then he would use a third. Or would combine meds. I feel really blessed to be off prednisone for a year now, without having to take anything else.
A "standard" dose of MTX is 25 mg weekly. I would guess your doctor will increase you. I didn't have side effects from the pills until I got up to 15 mg. Be sure you are also taking Folic Acid. It is very important when you are on MTX.
Hope you are feeling good.
Some people prefer the injectable MTX to avoid stomach irritation. I tried the injection and it made my head feel weird, so I went back to the pills.
Prednisone is a very dangerous drug that has side effects severe to other body organs over time. Replacing the prednisone with MTX or imuran and moving forward is important. I will need to see an endocrinologist to see if I can even get off 5.5mg. I flared the last time I went down to 4mg and it seemed to weaken my heart which is a muscle. Good luck with your taper and keep us posted.
Yes there are horrendous side effects from both of the drugs. My hair thinned terribly on Methotrexate and prednisone. I went from 115 lbs to 165 lbs in 90 days and I was so miserable that nobody wanted to be near me. I now have a hump on my back and diabetes that they attributed to the steroids. The most horrible thing was when I researched and found out that the combination of the two drugs would destroy my liver and likely decrease my life by twenty years. I was only 32 and refused to curl up and die. I researched alternatives and was so lucky that I know several specialists who were willing to stick their necks out for me and encouraged me to do the antibiotic protocol. Fortunately for me, it worked and I have not had any symptoms of the disease for more than 10 years. I am pain free and am so grateful that I was able to think outside of the box. Perhaps it is because I have studied nursing and truly understand the politics involved in all of this
I know the side effects of MTX and Prednisone are not fun but not everyone "dies" from it. I have been on both for the best part of 5 years. I get my glucose tested every 6 months. I also get my liver a kidneys tested monthly. I get a bone scan every 6 months. All have been normal for me. I don't like the drugs but the alternative is being in bed and unable to enjoy life. Unfortunately, when you have a serious disease, sometimes you have to weight the cost (with the side effects) with the benefit. For me, I begged for Prednisone because I was just that bad.
For your attention.
In this link i quote " Plasmapheresis removes circulating immunocomplexes and antibodies and has been tried in patients with myositis but is of dubious benefit.3,20,77 It did not improve muscle strength or functional capacity in a double blind placebo controlled study,3,20,"
Some seem to experience side effects really strong and some don t experience any. I hope it goes well for you :)