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1. • CommentAuthoralcyon73
   • CommentTimeOct 25th 2009 edited

    # 1Report Post
   Prednisone is a miracle drug for many of us with autoimmune disorders, but prednisone comes with lots of side effects that carry risks of their own. With that in mind I thought it would be a good idea to have a thread with that topic.
   
   I've been on prednisone for 10 months now. Recently my autoimmune disorder flared up and I had to increase the dose from 7 mg/day to 60 mg/day (I'm presently tapering down) and WOW! am I having side effects!
   
   I have weight gain, osteopenia, I have insomnia, I sometimes suddenly start sweating profusely, and sometimes my hands will start shaking so badly that it can be hard to do things like write or use a computer mouse. It always passes in a few minutes, but it is really annoying.
   
   So how about you? Does prednisone cause lots of side effects for you ? If so, what have you found that helps reduce the side effects? For example; I take melatonin at night to help me sleep better.
   
   Glen
2. • CommentAuthorLindaG
   • CommentTimeOct 25th 2009

    # 2Report Post
   I was on 70 mg for nine weeks over the summer and I had many of the same side effects you are experiencing. It was the first time I had ever been on prednisone, and I thought I was going to die--literally. I think it was Day 5 that I took a shower, got dressed, lay on the bed, and waited, sobbing, for a stroke or a heart attack. That's how horrible I felt. My family tried not to leave me alone for long periods of time after that incident.
   
   For the insomnia, I already had a prescription for Xanax for when I would wake up at 1:00 am and not be able to get to sleep because my brain wouldn't shut off (this was pre-AI). So, I used it for the pred insomnia every once in a while and it gave me a few hours of sleep. I also set myself up on the couch downstairs with plenty of reading material, a nice pillow, and a comfy quilt. When I felt the need to nod off, I was already comfortable and didn't need to go upstairs to bed.
   
   I just endured the sweats--being a post-menopausal woman, I knew to have plenty of cotton clothing available and never wear polyester--ever. Other than that, I just suffered through them.
   
   I did try and time when I took the pred. For me, taking it in the early afternoon worked best. I'm a morning person who likes to get things accomplished before noon. I felt relatively sane enough in the A.M. at the end of a previous dose to do computer work, answer e-mails, and be with people without going off on them before the "peak" began in the late afternoon/early evening--that's when I got all jittery and totally insane. By then, my husband had gone to bed and I was left to my nights of terror in peace.
   
   The weight gain--I'd like help with that one. I've been off the pred for over two weeks and the scale is not budging. I'm back to my old, healthy (and more portion-controlled) eating habits but the Buddha belly fat has taken up permanent residence and will not go away. I am very depressed over it.
   
   Thanks for starting this thread. I feel better just writing about it.
   
   Linda
3. • CommentAuthorhazelsoldest
   • CommentTimeNov 2nd 2009

    # 3Report Post
   I think my worst side effect with prednisone was my "fat face" !! I looked totally unlike me. I knew I was going on azathioprin and also knew that I might loose my hair so my husband and I had pictures made. I hate them(not his)! Every time I see the framed ones I want to turn them upside down, and my adult children just lie and lie. "Mom, those are really good pictures".
4. • CommentAuthoralcyon73
   • CommentTimeNov 3rd 2009

    # 4Report Post
   I just got my driver's license renewed and the picture they took of me is just awful. I clearly look not well. I am SO moon-faced and I really don't look like "me".
   
   I'm presently at 30 mg/day prednisone and holding until I go visit my rheumy later this month.
   I started on imuran in September and the long term plan is to taper off of the prednisone completely.
   I'm currently at 100 mg/day of imuran along with the prednisone.
   
   Glen
5. • CommentAuthorLibrarian35
   • CommentTimeJan 20th 2010

    # 5Report Post
   I was diagnosed with Undifferentiated Connective Tissue Disease nearly 3 years ago by a wonderful Rheumatologist who believes in giving the lowest dose of medication that will do the job. Although I was definitely standing "on Death's welcome mat" at the time, she started me on 30 mg. of Prednisone a day. Standard beginning dose is usually 60 mg. She believes that using minimal doses avoids many of the side effects that, in turn, require additional medications. It turned me around within 2 days! That doesn't mean I was "cured."
   
   I was on varying doses of Prednisone for the next 2 1/2 years, since every time we got close to lowering it enough for me to get off, I'd have another bad flare-up. The Rheumatologist persisted and tried me on Methotrexate, Plaquenil, Azathioprine. Now I'm on Cellcept and Plaquenil (slows flare-ups so I can recognize what's happening in time to take Prednisone to stop it). I still have to keep Prednisone on hand, but, because of the Plaquenil, just 20 mg. to start keeps flare-ups from becoming critical enough to require hospitalization.
   
   I haven't had to take any Prednisone for 6 months now and, except for persistent joint pains and lack of stamina, feel more "normal" than I have in many years. Within a couple of months, the "moon face" went away completely and I'm not gaining weight like I was. I do miss the extremely agitated energy the Prednisone gave me, 'though. I really got a lot of housework done then even if I felt exhausted while doing it.
   
   My experience proves, I think, that finding the right physician is the key to "living well" with an autoimmune condition.
6. • CommentAuthorPenney
   • CommentTimeJan 26th 2010

    # 6Report Post
   One thing to remember is Prednisone in your system can and will affect your blood work, TSH , sugar etc. also in going from one Doctor to another each should be made aware of how much pednisone you have been given recently. To much of it is worse than the disease and will make your blood work look sicker than you are. signed, Not the only one
7. • CommentAuthoralcyon73
   • CommentTimeJan 27th 2010

    # 7Report Post
   I'm still on prednisone at 30 mg/day. It has been a miracle drug for me, but the side effects are just awful. Nonetheless it puts my cryoglobulinemia into remission and keeps it there, so it is hard for me to complain very much. I started on imuran last fall but medical problems delayed my tapering off of the prednisone late last year and now that the problem is resolved I'm hoping my rheumy will tell me to start tapering off of it this week.
   
   Glen
8. • CommentAuthorEllie
   • CommentTimeFeb 14th 2010

    # 8Report Post
   Hi All: I have been on prednisone for 5 years. Started out with a high dose, have been down to only 6.5 mg for a few weeks, the lower the dose - the less side effects.. May have to take for the rest of my life.. but it works - it keeps my liver functioning & stops my body from destroying my liver. My moon face started to go away when I was at about 12 mg a day, so far has not come back fully but I do not think I will ever have the face I had before - thin with cheek bones. We can all be hopefull some day a med with out side effects or a better yet a cure will be found for all of us. Feel well all,
   Ellie
9. • CommentAuthoralcyon73
   • CommentTimeFeb 15th 2010 edited

    # 9Report Post
   Hi Ellie
   
   It's good to hear from you. I'm glad you have remission going Hopefully it will continue to work well for you.
   
   My rheumy has me tapering off of the prednisone slowly. I'm presently at 15 mg/day and holding there for a few weeks until I meet up with my rheumy next month. I'm moon faced like you would not believe. I have a huge roll of fat around my neck that makes me look like I have a goiter. I look just awful. On the bright side, my remission is holding up. I'm symptom free. Hopefully the imuran will be working for me and I can either taper to a low dose or taper completely off of the prednisone in the coming months.
   
   
   I had tried to taper off of prednisone last summer, but I had a big flareup when I got down to 7 mg/day and it would not stay in remission until I upped the dose to 60 mg/day. Needless to say, I've had every single side effect listed for prednisone.
   
   Glen
10. • CommentAuthorLily152
    • CommentTimeJun 2nd 2010

     # 10Report Post
    I started on just 10 mg/day of Pred 7 mos ago for autoimmune hepatitis. It seems I am highy sensitive to it and just that small amount has given me the same side effects as those of you on 40 & 60 mg/day: jitters, racing heart, weight gain, mood swings, devastating fatigue, etc. (So bad that I have been unable to work since March, and I, too have a moon face, 2nd chin the size of a cantalope and a true 'life preserver' above my waist.) Then I started a taper schedule: of 7.5 for a month, then 5 for a month (where I was supposed to stay for a year). What happened was that each time I dropped I felt better for a few days, then the usual Pred side effects would return with a vengence. My doc told me I am probably super sensitive to Pred, so she had me taper to 2.5. I am finally feeling closer to normal. I take it in the morning. Generally, I experience the various side effects thru the day, and by about 9 or 10 pm I almost feel good:) It's crazy! Anyway, the taper has not caused a flare, but the taper itself has withdrawal issues. For me, the fatigue remains so I have to rest frequently and I'm having intermittent lower back & hip pain. But I'm optomistic enough to have bought a treadmill and am so proud that I walked on it for 1/2 hr yesterday and today! Hoping my situation has provided some insight fo someone.
    Blessings to all.
    Lily
11. • CommentAuthorlisalee
    • CommentTimeJun 3rd 2010

     # 11Report Post
    Hi Glenn, I to have been on pred more and more recently - I have notice massive increasing sweating - my headaches are worst and I also having more infections then before - I started taking at bedtime - I ususally so tried at that point - I do not feel as many side effects -
    I wish you a pain free day, Lisa
12. • CommentAuthoralcyon73
    • CommentTimeJun 6th 2010

     # 12Report Post
    Lisa
    
    Thanks for responding and thanks for sharing. I'm presently down to 12.5 mg of prednisone a day. I take mine in the AM. I'm also on 150 mg of imuran a day (50mg 3X a day).
    
    I was in the process of tapering off of the prednisone but had to stop tapering due to ongoing medical issues that raised concerns that my cryoglobulinemia might flare up. Right now the side effects are not too bad. I'm still fat, and moon-faced, but I'm hoping that it will improve once I taper off the prednisone completely.
    
    Glen
13. • CommentAuthorxaviahale
    • CommentTimeJun 14th 2010

     # 13Report Post
    similar side effects- weight gain, puffy face, hand stiffness but it controls the inflammation in my eye and was said that it saved my life- if my opthamologist wouldnt have put me on prednisone for the year that they couldnt find out what was going on i would be DEAD.