I've only been as high as 25mg Methotrexate and I use an injections which are suppose to be better absorbed. I've been told it can take 3-6 months to know if it worked.

For me, Methotrexate didn't give me more stamina or muscle. My understanding is it stops the damage so you can begin building more stamina and muscle. There isn't any drug that is going to make you stronger. You will have to slowly and patiently work on it yourself.

I'm wondering what your Rheumy would allow you to do. We know it is important to stay as mobile as possible. What about walking even a few minutes? Or stretching at home...or using exercise bands to help? It took me a few months of Physical Therapy with a Neuro PT before I could do much but I eventually worked up to working out in the gym. My workout is pretty mild compared to others working out in the gym but it helped me stay mobile and independent.

I've never been on methotrexate, only prednisone. But the neuro started me on 100 mg. of prednisone for one week, then we tapered down quickly to 60 mg., where I stayed for a few weeks. Once I got to 40 mg. of prednisone, I stayed there the longest amount of time.

As Lexis has mentioned, there are no drugs to make us stronger. Some strength and stamina can be rebuilt, but it's not easy. The things I do are eating a gluten-free diet, staying away from artificial sweeteners and refined sugars, and taking lots of supplements, such as CoQ10, which my doctor said is good for muscles at the cellular level. Lastly, I try to do a little exercise each day--walking on a treadmill, using hand weights (1-1/2 lbs. each), dancing (but not with the stars), and bowling with my Wii. It's not much (maybe just a couple minutes), and definitely not a graceful site; but at least it helps me feel proactive and keeps me moving. Be sure to ask your doctor if you can start doing little things and find something that you can enjoy. Best wishes to you.

Hello Nancy. I am sorry you have DM. I have PM and was diagnosed same time as you. I am down from 60mgsred to 5mgs and I take 100mgs of Azathioprine daily. It took six months before I felt stronger and by eight months I began to feel well again. I lost tons of weight and no interest in eating but as the inflammation went my appetite came back and now I am trying to lose weight. I think most Rheumatologists would want you to do some daily exercise. I just walked a bit further every day. Now I can do most things. Today I see my family doctor about seeing a Physiotherapist as my knee muscles are weak and need building up. I don't know what your labs are doing, it may be worth asking your doctor and almost a year down the line if you really are not feeling any better ot stronger, it may be worth a second opinion. There are lots of great people here and on the TMA site who will help and advise you. Best wishes. autumm

Hi Nancy. I hope you will find out soon about what is causing your symptoms. Gastrointestinal issues are common with DM/PM.

I agree with everyone that exercise makes a big difference. I ride a stationary bike. I also have big trouble with fatigue and the bike helps a lot. I also get nausea on & off. I take care of the nausea by eating small meals. The small meals helps because my stomach is too slow in emptying contents into the small intestine (gastroparesis). I also need to lay down several times a day because I do not feel well.

I wish you well in finding the cause of your symptoms. Keep us posted.

Lexisgirl,
I too use the injections of mtx. My GI tract is a mess. You are right and are reminding me that the mtx is supposed to slow down the progression of the disease. Thank you.

My rheumatologist is not being helpful at all when it comes to exercising. Husband comes with me on each visit to rheum, who we saw last week and he just kinda stares at us when we talk about exercise. Honest. I like the dr., I think he knows this disease, however not giving me any advice, guidance regarding how/when to exercise is not right.

Thankfully, I recently saw a neurologist as I have balance issues, and he gave me a script for PT. So I am waiting to start this. I do have a treadmill, and do the best I can. I have heard of exercise bands. Thank you!

Nanny1611,
I wish that I could take a higher dose of prednisone. Upon diagnosis, I immediately started mtx injections and 40 mg of pred. I started tapering the pred. after 3 weeks, I just did not tolerate it well,(although my house was a lot cleaner). I think if I could tolerate a moderate dose of pred. for longer period of time I could give this disease a kick in the behind.

I also do gluten free, it really helps my digestive issues. Its expensive, but I have a motility specialist so I must be diligent.
I do own a Wii. I will try the bowling, used to do it awhile ago. Its one activity my husband and I can share!

Autumm,
I went from 146 lbs. at 5'4 to 107 lbs. (now I'm 5'3). I eat a lot of food. Have not gained any weight back. Almost a year after diagnosis.

I do walk up stairs (2 story house) do treadmill when I am up to it, but am still getting the sweats, and occasional low grade fevers. I am not out of the original flare.

Labs always normal. Never elevated CK. Poor dr. has nothing to go on blood wise. Did have positive muscle biopsy.

I am thinking about getting a 2nd opinion, also. What is Azathioprine? Thank you!

Trpt1,
I do enjoy my treadmill, but as of late I just can't get in the groove. That's it, I have lost my groove. And since its upstairs where its super hot, makes it harder.

Still bummed that I can't be out in the sun. First summer with DM, gotta go with the learning curve.

Waiting to work hard on PT. Thanks for your input!

Hi Nancy!
Sorry to hear about your troubles :( I skimmed through the comments so sorry if I repeat something. Just wanted to throw in my personal experience. I was diagnosed with DM a year and a half ago. I lost 33lbs (went from 100 to 67!) skin and bones. I started on 80mg prednisone and not sure how much methotrexate (my dad gives me the injections so i never had to pay attention) as i decreased pred, i increased methotrexate. i am now at .7 on MTX (whatever that means..i don't even know what that is in mg haha!)
i was very discouraged as it took me a while to start gaining weight -but definitely not a year. i lost my swallowing for 4 months so once i was able to eat on my own, that helped a lot with weight gain. i am now off prednisone for 2 months and still on .7 MTX. The only exercise i could do for a while was lifting my legs and arms as much as i could, which wasn't much, while lying down. i lifted soup cans and attempted to exercise with an exercise band they sent me home with but i couldn't do much with it. it seemed that i got my range of motion and strength back suddenly (maybe when the MTX kicked in?) i am now working out at the gym and using weight machines! hope you find a regimen that fits exactly what you need and you see some improvement very soon! prayers

Joyforali,
Wow that is tiny, 67 lbs. The good part for me is that I usually weighed about 135 for the last few years, but was so depressed that I was feeling so poorly that I had gained weight to 146 lbs. In the long run it helped me.

But the nutritionist said my weight is good, not to lose anymore.LOL
I am going to give it a couple more months, as my rheum. wants to increase my mtx if I don't get stronger.

I am glad you are able to work out at the gym. My time will come. Thanks for your input and prayers!

Hi Nancy. I live in London. I believe Azathioprine is called Imuran in America. Do get a second opinion. If you can't tolerate the Pred you may need something else to get on top of this disease. The first line drugs don't work for everyone but there are other drugs which do. It's just finding the right mix. Autumm

I do not have PM/DM, though I can relate to a lot of what you have said. I have psoriatic arthritis, which is another autoimmune disease, and also run low-grade fevers and have dealt with weight loss as a result of my disease. Fortunately I have weight to spare, though, as I had gained quite a bit from medications that I was on in the past. Over the last 6 months, I have lost 35 lbs as a result of meds and feeling generally unwell.

I am on 20 mg of MTX at the moment, which certainly doesn't help with appetite and weight loss. I came off of it for a while due to liver disease and just resumed it last week, and MAN have I been sick! Fortunately only the first 2 days were the worst.

I came across this board when my rheumy was concerned that I may have PM, but it turned out to be a rare drug reaction to a medication that I was on in the past. From what I had learned about the treatment of PM, there are other drugs besides MTX that are often used to treat it. It just may be that the MTX is not effective enough. If you do not feel that you are making enough progress on the MTX, then make sure to talk to your rheumy about it. You may even want to consider a second opinion at one of the larger teaching hospitals around the country.

In any case, best of luck to you!

Autumm,
Yes I do recall hearing about Imuran. I will get a 2nd opinion. I just feel that I should be having better progress, even if it's slow. Thank you!

Kim,
My doctor who has me on 30 mg mtx said on my last visit that if I don't see more improvement then we can raise it again. I'm was thinking, no way do I want to increase it.

I wonder if it has anything to do with the fact that he says that I have had this for at least a decade. And I can vouch for that. I always was weak and fatigued but very mildly. Just thinking why not try something different? Thank you for your input!

Hi Nancy. I really do believe you need the second opinion. There are other versions of the Pred which may suit you better and get on top of the inflammation. It does sound still active with you. There are other drugs than MTX its just finding the mix and it looks like your doctor a year down the line is not finding the mix. I am not medically qualified, its just my thoughts. Sometimes the labs are no help, my Rheumatologist always says 'its how you feel ' and I believe a year down the line you maybe should be feeling a bit better. All the best and hope this is helping. Autumm