So as probably with most of you my dose of prednisone seems to be on a tidal wave of highs up to 100 mg to lows of 5, well right now I'm tapering back down again. AND this time I gained almost 80 lbs. Now its not like I can exercise very hard, but I need to loose a good chunk of this weight, my dr already put me on Lasix. Plus my body seems to be going crazy each time I drop. I'm on a 4 month taper and can't handle much more, any suggestions?

I was on dexamethasone (similar to prednisone which I didn't tolerate) for over 9 months. I also gained almost 80 lbs. I lost all of it and a little more, when I got off the steroids, so don't despair. Though I did have a lot of swelling (lymphedema) in my feet, which has gone down, but I am now left with severe painful peripheral neuropathy in my feet. So if you have any leg swelling, keep up on the lasix, cut salt out of your diet, keep moving your legs and and if you can, go to a lymphedema therapist. I wish I had sooner so my feet wouldn't be so messed up now. Most doctors don't seem to monitor the effects of the prednisone very well so keep on them and good luck.

Thank you for responding! I did have swelling in my legs and feet, but it has gone done since I started the Lasix. I really hope the weight just comes off, I have been dieting and going to therapy 5 days a week. I am exhausted! Natalie

Hello As family Have the prednisone cause red marks or brusing anywhere on your body ? Also have it made your skin thin down there even when you go to the bathroom to clean yourself you bleed ? Have anyone have the back problems like i have? No surgery because of the lungs more physical therapy.Lost the job because i could not stand...But i had to try..At the max of imuran. Now down to 40prednisone already can tell that its not working breathing going down again.Up to 300 pounds.My face look like a basket ball..But i would have to say that i am not sad anymore. I am so at peace but very tired and sleepy. The pain dr. will not give me anything stronger so this is my life for now. one touch

I have also had a problem with hemroids in the past and it might have something to do with the steroids.I was given prednisone in July and really have not been off it since. I am have been tapered down to 20 mg of prednisone and I am also on 150mg of Imuran. I am starting to see some increased swelling in my hands and my doctor discussed how I might see some " diminishing returns" from using the Imuran. I was diagnosed in October with ASS and am anti jo 1. I almost could not move with the pain in my legs, arms, back and my breathing was a difficult in the summer. I have recovered very well in my opinion, but my muscles in my legs are still tight and my fingers are like sausages. I have seen some posts where people are responding well to Cellcept and will ask my doctor about that. Hope all goes well with your treatment and God Bless!

OneTouch my skin was also very sensitive. I'd bleed from wiping to much and not from hemorids either. I put up a comode and would rinse off my bottom with the shower head and warm water multiple times a day then wipe dry. It was the only way to not get so sensitive to bleed. I don't think its from the medicine either. I had that issue before the medicine and its actually better now, I think its from the scleroderma. My type of AS is EJ antibody, PM-SCL antibody, and slceroderma. The Imuran is making my bladder cramp up like crazy, does anyone else have these issues from it, I'm trying ro figure out if its from the Imuran. Checked clear for UTI, its not that. Sorry you guys are so swollen from the steriods, i'm not near that bad and its misserable still. I don't handle steriods very well so I haven't been on as high of doses as you guys have. I'm alergic to prednisone.

Hello Family This is the first time that my hands are hurting and red around my nuckles. Do most of you have some type of RA along with your A.S The weather is starting to change in virginia going south.Do everyone have more problems in the winter? My feet have burning pain mostly at the heel. My best friend has MS and she is helping me.Its funny how we have some of the same issues but to different names for it. I have been to the doctors more this week then when i first found out whats wrong.Have any doctor said this is prone to women more than men? just wondering onetouch with a smile! Today is still a good day.I hope for all of you to .

oh yes. my heal pain is to the extreme. i have to prop up my heels with a pillow so that my heals are in the air or they will really fire up in a bad way.

I thought I was crazy with the heel pain, no one understands where and why it hurts so bad! It has been driving me completely crazy with pain! They only time I get a bit of a break from the pain is when I go to pool therapy. onetouch, I have problems with bruising to and my face is swollen and basketball like! I have been on prednisone for so long, 75,g at my highest...I'm tapering down and right now I'm on 17.5mg. Its hard for me to be this heavy, last Nov. I was 135 lbs, now I'm 207, ugh! I can't work anymore either. My back, leg and arm pain gets pretty severe. It seems it only really goes away when I'm in the hospital (I've been admitted 3 or 4 times this year alone) and they give me IV pain meds. CellCept has really work well for my lungs, but my lungs are pretty bad, they don't expect them to go above 48-50% ever. I have the PL125 antibody, which is rare within this rare disease! I was checked for RA, but I do not have that, but I do have post-inflammatory arthritis. I also heard that ASS is more prevelant in women than men, I also heard most are diganosed in their 30s! I was diagnosed a year and a half ago at age 29. I am glad to hear you are at peace. I wish i could be, I am very sad all the time, but I have to put on a good face for my son. My dr changed my antidepressant, so maybe that'll help. Winter is bad for me to, I'm up in PA so our winters are awful, so far its been pretty calm, I hope it stays that way!

I don't have the burning heels...it's mostly in my toes or the top of my feet. My hands are swollen and when I lie down at night my arms can go numb all the way to my hands. This is my first Winter with ASS so we'll see how it goes. I am going for a 2nd opinion to the Medical University of South Carolina the middle of Jan.

Good day to everyone, I am in my mid-50s and was diagnosed with Anti-Jo1 almost 5 years ago. Went through the prednisone treatment. When I was first diagnosed I went on-line to see what I could find out, and to this day I have found maybe two medical journal articles about this disease. What I learned from it is that for every 200,000 people tested each year, only 1-2 are diagnosed and almost 80% of those are women. As for personal experience, my hands were one of the worst things when I was diagnosed. I noticed that when I was having a bad day, my knuckles turned red. But the oddest thing of all is that my hands are always warm, sometimes to the point of being hot. I live in Ohio and our winters are nothing to laugh at. I have always ached more in winter, but I also have osteoarthritis, so that explains that. Well, I wish us all a very merry Christmas, and the best we can be in the New Year. I refuse to give into this thing, and will fight it all the way. God bless us all.