Dermatomyositis symptoms and conditions

I've been on prednisone for nearly 3 years continuously for Ulcerative Colitis. I've been on 60 mgs for quite a while but I am now down to 4 mgs. Once I went below 10 mgs. I started experiencing severe itching on my entire scalp and then upper back, ears and collar bone. I went to a dermatologist but she can't see any reason for the itching. Has anyone else had this side effect while tapering? It's making me crazy!

I was just placed on Cellecept last week- 500 Mg 4 times a day-
for my autoimmune muscular myopathy- I was a body builder 6 months ago- now I can barely make it across the Target parking lot.
I am sure the myopathy is Statin induced as I was on Lipitor-)rather than Prednisone as my doctor said less side effects.
He said I should see improvement in about 6 weeks- is any body taking Cellcept for autoimmune disease?
Thank you.
PS; So far- side effects seem to be weakness- more shakiness-

Hi there... I have just found this site and I'm very grateful to everyone who has taken the time to sit down and tell us their story mine is very similar. BELIEAVE me I feel like I am pushing my family away and I'm losing my relationship with the one person who used to make me feel like I was the most beautiful woman in the world.
I'm a 40 yr female have or maybe had a great job that I loved... On April 12 I noticed a small red rash on my lower right leg no big deal went to the Dr. gave me some cream and sent me home well I went to work and by the afternoon things just seem to get bad my legs began to swell and little blisters started to pop up so I went to the E.R. they had no Idea what was wrong with me got me an appointment to see a skin DR. so I went home but the pain from the swelling was so bad I could not walk any longer went back to the E.R. they gave me some pain meds and called in some other DR. things had gone from bad to worse my feet had gotten to big I could not put on shoes and I had bruised completely across the bottoms of my feet they put me on 30mg of PRED. and it seem to be under control sent me home after 3 day in the hospital things were good for about a day or so I thought I would go back to work well that was not a very good idea.... My sister had to come and take me back to the ER where they did 2 biopsies and still have no idea what is wrong with me. so now they put me on 60mg of PRED the rash has gone, lots of scaring on my feet because of the blisters once they broke and dried out but I can live with that....
It's the side effects that they don’t tell you about,
MOON FACE I can't look at myself cause really that’s not me anymore,
WEIGHT GAIN I have always been thick but I can't handle the extra 30lbs I've gained,
MOOD SWINGS are unbearable,
PAINFUL JOINTS, CAMEL HUMP, BLOODY NOSE, BRUSING, SORE TEETH/GUMS, DRY EYES, FAITIGE, and worsted of all
I don’t have a support systems in my life so I'm fighting this by myself everyday, I have 3 kids that I have tried to explain all this to but they don't get it and well my boyfriend he tells me he understands that its the meds pushing him away but if I can't figure away to control this I will lose every thing including my job. I cant even get the energy together half the time to make it up and down the stairs which also comes with the pain of just trying to lift each leg up to climb the stairs, I also have the camel hump which I find very painful, The acne and the hair growth that I have to get wax off once a month cause I feel like a man I feel like a loser and as of the last couple of days I just want to give up I am now down to 20mg per day but I find that I am feeling so sick I cant think straight I hope and pray for each and every person out there that has to take this MED that you get better and I do hope that my symptoms wont come back. Thanks for being here and I’m glad I found this site. I know now that I’m not losing my mind completely. Elizabeth.

This is about my sister who was diagnosed with dermatomyositis about 1 month ago. She has been on prednisone ever since and just a few days ago started experiencing really bad stomach pain and back pain/burning on the left side. we took her to the e.r. where they ran a number of tests and didn't find anything wrong. i have been researching all her meds and can only come up with this: prednisone has to be the culprit. God bless all of you who have to take this drug for anything. I wish you all the best. It has been hard seeing her suffer, but without it her condition would not get better.

I have been taking prednisone for dermatomyositis for the past 4 months. I am on 30 mg a day. When I try to taper, my rash and muscle pain/weakness come back so we are trying 1mg lower every 5 days now to see what happens. Other than thirst and a rapid heartbeat if I drink cafeine during the day.....no side effects at all. I have not gained weight (but I have been on weight watchers 5 years and have maintaned my goal weight through that and as much as exericise as my disease allows) nor have I had gotten the moon face, etc. However, my best friend who is on only 20mg daily for the past 12 months is now diabetic, gained 45 pounds, got the moon face and rash. I would not know if I had the rash or not as my DM causes a very nasty rash. I know this medication has many horrible side effects and can be devastating ... but without it I would not be swollowing, teaching my special ed classes daily, hugging my grandchildren, or taking care of my own needs right now. I am 54.
cheryl

I have been diagnosed with Dermatomyositis (muscle disease called inflammotaroy myopathies)....very painful and weak is my whole body...wherever there is a muscle< I was in pain. They tested for Lupus and still not out of woods on that one....but they are treating me for the other as the symtoms with the skin also......I have been taking Prednisone for 11 days now in doses of 20mg three x day...It has taken my extreme pain away at night as I was so inflammed my pressure areas of my body would not only be in pain but numb....my body is very weak underlying complaint and unable to walk a great deal, but must keep working on my job....so it has at least help me to keep going....One thing is my voice and my eating are altered as I can not swallow because of my muscles "giving up" when they become tired in my neck....So I must be careful what and how I eat......and I anwer phones all day at work and talk with residents in a Retirement Community here in Prescott AZ....and my speech is getting harder and harder to control at times....Weight gain....not yet as I am watching that I eat only "good" food that counts when I can eat it......I do not know if this is from the Prednisone or from the disease I have....I have heard conflicting answers. If anyone could let me know, I would listen to another opionion.....God is good and He will provide strenghth and care for me.....have faith!

Have they tested you yet for dermatomyositis, Guest #14571?

Sometimes this crops up after a bad infection to the skin. My mother has just been diagnosed with it. Do you experience muscle weakness when your prednisone dosage is lowered or do you know?

My mom was on Lipitor for 2 yrs and chose to get off of it. Several weeks ago she got increasingly week in her legs and arms to where now she cannot walk. I have her in a wheelchair and seeing several doctors. The most recent Dr seems to be very dedicated. She's had so many tests and it is discouraging. They are not sure but think she has dermatomyositis. Her legs are with sores which look like a bad case od dermatititis. Is there any cure ahead? What do you recommend we do next? Sr. Therese Ann Ridge, her daughter

Thank you all for all your posts. They help me feel like I am not alone in all this junk. I have been on Prednisone since mid July when I was diagnosed with Dermatomyositis. Even with all the side effects, primarily the weight gain and bloating, I feel better than I did in June. I could hardly walk. My sleeping is actually better now than it was with the pain of DM, and I have always been hypoglycemic so the elevation in blood sugar has helped me.

With that said, I have always been an extremely healthy and active person so the weight gain is killing me. I also prefer to be holistic. My biggest fear has always been long term medication, but here I am. My pred. level was just increased 2 weeks ago to 60mg / day. Within one week my face has become very round, and I look 4 months pregnant. I am very hopeful that someone will find that miracle diet/exercise regime to help balance this side effect. I work out at least 6 days per week. I eat healthy, but have recently gone back to a yeast & sugar free diet. All this with no success. I just started taking Methotrexate 2 weeks ago so I hope maybe it will give me the success Liz has seen in that area.

Other side effects: I am very happy to have my energy level back, but my strength isn't back so I get very frustrated and irritable. I have issues with blurred vision. And I have trouble concentrating. My thoughts often wonder while I am in conversation.

I hold you all in my prayers and hope that you will find ease as you go through this challenge. If we can all stay positive we'll get through it.

Best Wishes,
Elizabeth

Another Lipitor horror story.I have just been diagnosed with dermatomyositis caused by lipitor.It is a horrible skin disease.I had been on lipitor for close to 2 yrs.It took 4 doctors to finally give me a name to this skin stuff.Also muscle weakness is one of the symptoms and lots more.Am trying to get the skin rash and and pain under control.Just had a skin biopsy today.I have had this for 9 months and it has gotten worse every month.Rash is like a sun burn on chest and back and arms.Around eyes and on eye lids and under eyes is purple rash.

It will natural med for me or live with high cholestrol.

If you are on Lipitor and get a rash find a good dermatologist.

I have been on prednisone since end of February/05. 50 mg for a few months then down eventually to 20, had to go back up to 30, symptoms all came back.muscle weakness , and since I already have that with Dermatomyositis, it was a little confusing if it was helping at all.

Weight gain , moderate, but definite swelling of the face. Acid reflux a problem, hair loss.

A little discouraging, but necessary. I am now at 15 mg and going down to go off. Plaquenil has been prescribed and I have been on that for 2 months.Not really seeing improvement but have to get off Prednisone.Far too scary! Hopefully I am able to stay off it! I have always been a relatively healthy woman and I want my life back!

pain upon injection, itching, watery eyes, rash, muscle weakness, headache, diarrhea,heavy nosebleeds, confusion, anxiety, panic attacks, muscle cramps, tired, swelling in face that was also a purple color, gagging, very tired, stomach cramps, loss of appetite, trouble breathing, sweating, chills, lack of concentration, memory loss, irritable, sore mouth, upper arms felt like mush, large mass from site of injection to knee and around most of leg that was very very painful to the touch, injection site swollen, red, warm, bruised, tender, loss of balance (but not dizzy), throwing up something that looks like bile, hard time swallowing, tingling in stomach, really cold feet, skin flaking off, knee pain, dark colored urine, shortness of breath, need help to get up out of chairs, bed, etc. having trouble grasping and holding onto objects, feeling of unreality

Diagnosed with Rhabdomyolysis and then Dermatomyositis and Gottrons Sign. The first is acute kidney failure and the last 2 a rare muscle disease.

I would love to talk to anyone else who has had any of the above side effects as the result of Kefzol or Ancef (cefazolin sodium) as well as anyone who has been diagnosed with these conditions.

Have been on predisone for a year now. Tapering off. Diagnosed with dermatomyositis in 1998. Weight gain (30 lbs.!), some depression and had to have 2 places on my gums grafted because my gums were coming away from my teeth! Read about tooth loss from some of the emails on this site. Anyone else have gum problems? Doctor told me this is NOT a side effect of predisone. I wonder........
Anyone diagnosed with dermatomyositis, I would love to hear from you. Very rare disease......one-four per million. ***

I've been diagnosed with a mixed connective tissue disorder which is a crossover of Sjogren's, Dermatomyositis, and some Lupus.

I've been on 60 mg a day of Prednisone for almost a month now. I've been slowly realizing some side effects.

I had a really bad mood swing yesterday with my kids, which I feel just awful about today. I never had a mood swings before that were really really bad. It was a bit scary, because at the time you don't realize it and upon later reflection it's pretty obvious you weren't in a fair state of mind.

I've also noticed a very puffy face and some weight gain, which i am also going to blame on the holidays heh heh. I haven't felt my appetite increase though, but I feel bigger.

Also, the last few days I've noticed I've been getting really hot and I need the fans on and I've been sweating a bit. It's December and I'm sweating! Can't wait till this summer!

In answer to the questions about how long it takes to lose the weight gained due to prednisone, I can give you my experience.

I had a flareup about 10 years ago and was on prednisone then for a couple of years, milligrams varying. After a few months of being off prednisone, I somewhat lost my appetite, especially for sweets. Gradually, over about 1-2 years, I lost 50 pounds without really trying.

I have been having a flareup of dermatomyositis now for about a year and a half. I have been on prednisone and have all the same side effects as others have listed below.

Dr just started me on methotrexate and says it will be six months before it shows any effect. I'm looking forward to getting off prednsone and getting back to normal again.

I have been diagnosed with DERMATOMYOSITIS-inflamation of the muscles. Had very severe pain in muscle,fatigue, patchy rash, calcium deposits,difficulty climbing stairs and very tired. Dr. put me on prednisone -60 mg per day. I really did not want to get on this drug, but seems like I had no other choice- as I could not do anything around the house, just trying to take a bath or do hair-I could no do. I have taken for 2 days and seems like I have a little more energy. Is there anyone else that had this same diagnosis and the results and problems with drug?