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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Cadolph 03/09/2011

I have just recently been diagnosed with Mixed connective tissue disease - predominantly polymyosotis. I'm on 50 mg prednisone and 100 mg Imuran.

I'm not sure how this all works with figuring out the medication. I know I need to do bloodwork monthly. Do they determine by the bloodwork what dose you need to be on and make adjustments?

My doctor had indicated that I would be weaned off the prednisone to some kind of maintenance dose possibly?

I don't see the Doctor until April 14th which is when all the tests should be back- EMG and muscle biopsy.

The other question I have is weight loss. I have lost about 15 pounds and now down to 112 pounds. I feel like I'm disappearing. My rheumatologist said the weight loss is probably related to the disease? Has anyone else lost weight and then gained it back once the disease got under control?

nanny1611 03/09/2011

Because I responded well to Prednisone, I was not given Metho or Imuran. My neuro tapered it based on blood work and how well I was doing clinically. I started with 100 mg. in 2008, and am down to a maintenance dose today. The neuro told me that at some point Prednisone will stop working and then they will add other meds.

As for weight loss, yes, I lost about 12-14 lbs. in a few weeks time. Part of it was my waning appetite, and part of it was muscle wasting. After diagnosis and using Prednisone, my appetite increased (a little too much, which is common) and I gained back the lost weight (plus a little more).

Hang in there! Once they find the right combination for you, things will improve. Best wishes to you.

joslene918 03/09/2011

I also lost weight (~10 lbs). My appetite has definitely picked up with the predinsone, although thankfully I have been able to maintain my weight thus far. LOL...On second thought that may not be so good because I really could stand to lose a little more.

As for the tapering of the predisone, my doc has been basing it on my CPK levels. I , too, have wondered if there is some kind of range/scale that they go by to determine your dose.

deleted_user 03/09/2011

I initially lost about twenty pounds but after taking the prednisone I did start to put some back on about five pounds or so....but now they are trying to lower my dosage I am losing wait again. I am nod wondering if when they add something else to the mix that will change???

Just keep taking it day by day!!! Hugs!!!

Barb

deleted_user 03/09/2011

I was Initially put on 60mg of prednisone in July last year and had lost 27 pounds in muscle mass. I could do nothing but lay on the sofa. I did that for four months. I could walk in the house, but to get to my dr appointments, I went in a wheelchair, I could have walked in, but couldn't have made it back to the car.

I have put on 20 pounds, my prednisone is being decreased monthly and I'm now at 25mg. I also take 10mg of methotrexate once a week. I did 2 IVIG treatments, in October and November, that really helped turn the corner for me. I started physio in January which is helping tremendously. I have good weeks and bad weeks, I need to learn what my limits are, I tend to overdo it!

Good luck to you.

deleted_user 03/10/2011

Yeah, you loose muscle mass and generally put weight back on as fat (sorry).

Your meds sound pretty usual. Yes, based on labs AND how you are feeling they will change the dosage. You will likely feel worse before you get better...just plan on it for a while. You will feel week (muscle loss) and tired (muscle loss,meds) BUT once you taper down can start exercising again you can build back some of the muscle.

BUT plan on a good year ....and possible more. It can be a long and slow process BUT you will be ok...

Cadolph 03/10/2011

Thanks everyone for your words of encouragement. I was getting a little worried and my family doctor is not very helpful. No one really knows much about this disease.

It's reassuring to know that most of you have gained the weight back.

deleted_user 03/12/2011

Be careful with that. Weight gain of muscle comes with effort to again it back (weight training, cardio). It's hard, sometimes painfull but NECESSARY. Don't be (like me at times) a lump and comtinue to sit once you get the ok to move again.

Also, DO NOT RELY on your family doc for much else than emotional support. I love mine and he knows way more than the average bear (his wife has an autoimmune disease) BUT he is not in charge of me. You're right..they don't know a lot about these diseases. We are rare unique individuals and need to be treated as such.

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