Quantcast

Myositis Support Group

DM/PM helpful info, recommendations of good docs, light at the end of the tunnel?

#1

Hello Everyone,

I just joined the group not too long ago. My mom has been suffering severe muscle pain since the end of November. Pain that seems to be mostly in the same areas: forearms, upper arms, shoulders, thighs. She has described the pain as muscle spasms (like a Charlie Horse) that doesn't let up and jumps from spot to spot. She normally needs someone to massage the area until it jumps to the next spot. She sometimes tries to do it herself, but when she uses her arms and legs, they will spasm in pain. Since she's in pain so much she tries to not use them as much which I would expect to cause her muscles to be weak. She lives in the Henderson, Neveda area (pretty close to Vegas). She has gone to 2 Rheumatologists and the first one based on rash on her face and scalp and blood tests diagnosed her with PM/DM. The doc put her on prednisone and methotextrate. She has been on them since then. I think she also have been taking pain killers which don't seem to help much. The muscle pain moving from spot to spot made my dad think she might have fibro as well, but I am not sure there is a test for Fibro out there. Is it common for PM/DM patients to have so much pain, pain that travels as well?

My dad did have her go to see another Rheumy and that one diagnosed with DM. He added Azathoiprine to the other drugs she is taken. How long does it normally take until people feel better with these drugs? I was told it is a very long process, 3-4 months or longer. The doc also noted that DM/PM can be caused by an infection (she did have a horrible case of the shingles probably 6+ months before this all started) or a tumor. She last week got a catscan for her abdomen and chest to check for any tumors. Does anyone know if this is common, tumors and DM/PM?

I have been researching whenever I can and some people were suggesting exercise, is this good for her or not ? Right now i think she is in bed most of the time and i'm afraid her muscles will just get weaker the less she uses them. My dad who lives with her tries to get her to walk around every day, but I know it's tough when it hurts so much.

Also, when is a muscle Biopsy needed?

Does anyone know of any good docs out there near the Las Vegas area?

I know there is the Mayo Clinic and John Hopkins, has anyone got to these places to get diagnosed and for treatment? I heard possibly UCLA?

Have people who have DM/PM gone back to their normal routine and had to deal wth flare-ups here and there or are some people haven't found relief in meds or treatment in years?

I keep reading that this meds long term are not good for people? I heard that prednisone should not be taken for long periods of time. Have people been prescribed Rituximab?

Thank you to all for taking the time to read all that I have wrote. I know it is a lot of questions I have. I do want to say that Nicole Smith has already taken the time to answers a lot of my questions. Thank you again Nicole!!

~Sophie

0 Likes

#2

Hi Sophie!

I'm sorry that your mom is going through so much.

Sometimes it will take a few months for the drugs to kick in. Especially with Azathioprine. Prednisone should be a pretty quick "fix" though, although generally only temporary since it isn't always advised to be on long-term.

Muscle biospies are not required, but many of us have had them to aid in diagnosis. If two rheumatologists were able to confirm with bloodwork alone though, she may be able to avoid that procedure.

While technically DM and PM don't have as much pain as there is weakness and fatigue in the muscles, I myself and many others do have pain. I also have fibromyalgia - diagnosed my the Mayo clinic. There aren't blood tests for fibro, but rather a series of classic symptoms. I would try to find a doctor who works with Fibro in her area to discuss that. Often the pain can be a result of that, or other overlapping conditions.

Exercise is especially helpful for Fibro and will not hurt your mom in terms of her DM - it's must a matter of what she is able to do. The Mayo gave me a listing of gentle stretches and strength exercises to do, along with a minimum of a 3-5 minute walk daily to help avoid a fibro flare.

This will help to keep her muscles from atrophying as well.

Visiting the Mayo Clinic was HUGE for me, so if your mom is able to go there, I would highly recommend it. They will not leave any stone unturned!

All the best,
Maren

0 Likes

#3

Hi again Sophie! Maren is a great person to talk to about this also (obviously)!

Please keep us updated when you can!

Nichole

0 Likes