Polymyositis symptoms and conditions

I HAVE BEEN ON PREDNISONE FOR 10 YRS. I AM ON 5 MG FOR 4 YRS. I AM HAVING SEVERE PAIN IN RIGHT HIP. I CAN'T LAY ON RIGHT SIDE AT ALL. WHEN I WALK OR BEND ITS FINE. BUT TO LAY ON BACK OR SIT OR RIGHT SIDE I HAVE SEVERE PAIN. I SAW THE DR TODAY HE SAID THE TOP OF THE FEMUR IS SOMETIMES EFFECTED BY PREDNISONE. LIKE BLEEDING OR OSTEOARTHRITIS. HE GAVE ME NAPORSIN. DOESN'T WORK STILL HAVE SEVERE PAIN. I HAVE POLYMYOSITIS. THE PAIN IS SO BAD IT HAS BEEN GETTING WORSE OVER 6 MONTHS. GOING FOR XRAYS. I AM A NURSE AND CAN'T FIGURE OUT WHAT HE IS TALKING ABOUT.

Being weaned from Methylpred, for the third time in 1 1/2 yrs. VERY bad side effects from losing weight, to siezures, thin skin,lots of bruising, mood swings, depression, anxiety, shaking. Now that I have been decreased once more, from 42mg daily, to 12 mg, my stomach is enlarging by the day! My body and face are thin, (size 4) however, my waist is now 35" and my lower abdomen is 39". I am totally uncomfortable. I work out daily, watch my caloric intake, but each day my clothes get tighter. Any ideas? Is this normal. Can I hope to get my flat stomach? I was placed on mega doses of steroids, when it was rhought I had Polymyositis. Had leg biopsy---inconclusive, however, steroids seemed to lower CPK numbers after several months. Now Neurologist believes steroids are causing numbers to raise, and weaken my muscles. Yuck! Thanks for any help JN

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.

Hi,

I've been on Prednisone for two months now. I started at 90mg and am now down to 15mg. I was diagnosed with Polymyositis and have started Methotrexate so I will be off the Prednisone in about a month. The thing I hate the most is the night sweats! I wake up soaked every night. I also have a hard time sleeping. I was never a morning person and am now awake by 6am every morning! I haven't experienced the weight gain or face fullness thank god but I still can't wait to be off the Prednisone!

36 y/o F

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

Muscle Weakness....I have been getting muscle weakness in my upper arms and thighs. My one doctor thinks it is a side effect from the predisone...however, I was put on predisone initially for this. My question is, the muscle weakness from predisone??? is it generalized...all over? Or concentrated in upper arms and thighs like polymyositis? I am on 15mg. and can not function.... I need 40mg. for the muscle weakness to go away. Please help....thanks