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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Tapering.

Ricky23
Ricky23
I decided to Taper from 30mg predislone to now 5mg. I did over 6 weeks. My moods were awful. The weight gain too ..from 9 stone to over 11 stone now . My head has to big bald patches. Will my hair recover,? The onlycside effect I have is the rash is back on my neck and my face is so hot!! My scalp itches constantly. Will this settle down at all? Does anyone have any suggestions for creams to help with the rash. Everything Doctor has given has been rubbish!!
nanny1611
nanny1611
When my skin is itchy or a rash begins, I use Coconut Oil. It can be used as much as necessary, because it's a food product and safe (unless you have a coconut allergy). As for hair, I had too much on my face, which went away. The hair on my head didn't fall out, but it changed texture constantly and became very soft and limp like a baby's. Now it's back to normal, and I just had a beautician check the health of my hair, which she said is good again.
autumm
autumm
Hi Ricky. It seems to me you need to be back on a higher dose of steriod, there is no quick fix cream, you have to take the steriod until the job is done, be careful of what you eat and when you are better lose the weight. Sorry to be blunt but that's the way it is. I was on steriods for 20 months. I am now working on the weight. Its a marathon Ricky, it's never going to be a sprint. If we follow the way we get better faster. Hope all goes well for you. Autumm
amberhere
amberhere
Hi Ricky - perhaps your taper was too quick? I think I am quite well known on this site for my tapering problems. I am stuck on 8mg at the moment with no signs of dropping. I found if I tapered down too quickly I got the pains, hair loss etc. I am taking Plaquenil for the rash which I have nearly been on a year, MTX - which is probably being put up on dosage to help get off the steroid. I agree with Autumn - I think your steroid should be put up again to a bit higher and go slower tapering. Good luck!
trpt1
trpt1
Hi Ricky23, If you are having bad rash then a prescription steroid cream from the doctor would probably help. Coconut nut oil works great, but if the rash is too much then you will need a Rx.

I agree with everyone in that your taper may have been too quick. I would suggest having the doctor evaluate your blood work and if necessary, return to an appropriate steroid with DMARD dosage. The whole idea of our medications is to feel well on a daily basis. When there is discomfort then that means find out why and adjust or add medications as needed.

I wanted to get totally off of prednisone too. I learned over time that I have active disease and can not taper below 5mg without flaring. Everyone is different. Be kind to your body. This is not a race.

Good luck!
mccourtjs
mccourtjs
The itchiness is a sign that you need more prednisone. My rheumy also gives me clobetosol liquid to squirt on my head to help. As far as creams for your rash, I have not found them to be helpful. I take Biotin for my hair issues but it takes a few months to start working.