I know we have talked about this before but for those who have been able to get off this awful drug, how long did it take and did you flare while doing it?
I was down to 5mg and went to 4 this Monday. last night it hit something awful. My ra has never been under control but have been on prednisone for almost a year and have a chronic yeast infection and bone deterioration because of it. I won't even go into the 60 pounds I have gained and my oh so pretty moon face or the fact that you look at me and I bruise.
I was so weak and hurt so bad last night, I couldn't even get of the couch to go to bed. I just laid there and cried and cried until I was empty. I almost had hubby take me to the er for something stronger than the norco 10mgs I have.
I woke up this morning and my eyes are flaring, they are so red and hurt so back on the fml steroid drops today. I can barely move. Everything hurts and is swollen even more than usual.
Do I try to tough it out or increase the prednisone? I have an appt at 4 for a massage and pt after that but I can barely sit up let alone move.
I'm sorry I don't know anything about prednisone, but I have been
reading some things about yeast lately, and perhaps getting the yeast
under control will help your other conditions. Yeast is implicated in
IBS, joint swelling, fatigue, and a host of other problems. If diet
(cut out sugar, refined flour, fruit, and alcohol---especially wine and
beer--, and some people say anything made of yeast like bread and soy
sauce) doesn't work, you can get probiotics at the health food store or
your doctor can prescribe yeast busters such as diflucan or nystatin.
Like I said, I don't know anything about prednisone but I have read
other posts where people cut up the pills and go down by quarters, so
instead of going from 5 to 4 they go from 5 to 4 and 3/4. Sure, it
takes forever, but whatever works, right?
Michele
I have got as far down to 1mg and had to go back up to three. Boy this
is a real baby step thing. I see my doc next monday and my
question is "If I have to rely on pred does that mean the other meds
arent working??". I wish I could help. I hope you hear some
success with getting off pred. Ive been on pred since last july.
I am awaiting some blood tests results, hopefully will be in very soon and will be started on a prescription medication, actually she said two, for the yeast infection. I currently take diflucan about once a week for the break through vaginal yeast infections but it is a systemic problem now and she said the otc stuff probably wouldn't help at this point because it is so bad and that I really need to get off the prednisone so it is likely to come back even after treatment.
It really confuses me on how my blood work for the ra stuff is relatively normal and the rheumy says I am under control but obviosuly I am NOT!!! Its been 3 years, 5 miscarriages and I am losing my will to fight. I have given up hope at having a baby, at 36, I can hardly take care of myself but I can not take any more pain.
I was on Pred for a year, started at 15mg, went to 10mg all summer, then 5mg until Dec, then 2.5 for two weeks, then half that for 2 weeks and I was off it in Jan. I don't feel as good as when I was taking it, but it's bearable. Of course I'm waiting to go back to work and on the bad days I take Aleve. My hands and elbows are the worst, but the Remicade and MTX must be holding their own, which I was wondering about. Hope you can find some relief.
Deidre
((((Michelle))) please do not lose the will to fight. I agree with Gimpy about the yeast infection problem. It causes so many other issues. Let's see what happens when that gets cleared up.
Don't be confused about your normal RA bloodwork. I have been sero-negative for years. But I still have RA and a raging case of it if I do not have it under control. You present with all the classic RA symptoms and that is what your doc should look at. Not just your blood work. Your doc should take into consideration your symptoms as a whole.
People that are stricken with RA often times need the prednisone and have a hard time coming off of it because our bodies do not produce enough corticosteroids on it's own. As we all know, corticosteroids take care of inflammation in the body. I have been on pred since February and have dropped to 5mg as a maintenance dose. As soon as I dropped to 5mg, I went into a flare for about a week and then it calmed down. Because we are missing what our bodies naturally produce, I feel we are going to flare as we drop our pred dose in the attempt to get off the stuff. We have to let our bodies readjust to not having what it needs.
Dear deidre, it sounds like we are on the same meds. I'm interested in how you do. I'm trying to get off of prednisone , 15 a day, but it hurts when I do (stiffness returns, etc.) Had my 3rd Remicade on the 19th of last month (don't know how much, but I think a small amount? (don't go back for 8 weeks!!) and from 2 to 6 methotrexates, weekly, soooo.....hurting more today, which is confusing me!!! (only increased the methotrexate for the last 3 weeks, maybe I need to 'be patient' !! thanks for any info you can give me. I felt terrific Monday BEFORE I to the methotrexate?!! ugh
sarah
sarah, i also am hurting more since the start of the mtx. aslo started prednisone arounfd the same time. i took my third shot of mtx. last saturday and i am still feeling the effects. maybe we need to give it more time?
kelly
My Dr has never let me have Pred. due to OA and my rheumy also calls the RA "under control" but he did say it meant no further damage is going on and it by no means is the same as being in remission. He said I still have a lot of pain and some inflammation because I have RA.
I too am sero-negative so blood work doesn't mean much. X-rays are what my Dr uses to check the disease progression.
Feeling better this afternoon after taking more folic acid. I'm taking 3 x as much methotrexate so (can't get to the docotr!), thought more folic might help. Stayed with the 2-1/2 pred down from 3......I feel better this afternoon? Who knows? Thanks for the responses.
sarah
I was not sure if I should reply to this. I can say I feel your pain! I have been on Pred. for over I year now. I had a plan to be "off" by March 21st. With my pulmonary doctor's help I had been reducing and I was down from 20 mg. to 2.5 mg. on March 7th. On March 12th I felt like a mack truck had hit me. My RA has a profound effect on my lungs during a flare, and they pretty much shut down. To make a long story short. I have been home from work since te 15th and I have gone from 20mg. to 40 mg. to breathe. I know what it is like to sit and cry until there is nothing left. I am planning on doing the Arthritis Walk on May 12th. I signed up for 1 mile and yesterday I used a power chair to grocery shop. I do know that things can turn around for the good just as qickly. I realize now that most likly I will always be on 5 mg. of Pred. I also take Enbrel, Arava and lung meds. I have had RA for a year now, and it does change everything. This forum has been a real blessing for me. EVERYONE is different in this RA thing. You will find your way. I wish you all the best, hang in there, Rain Does anyone know what would happen if I went from 3 prednisones to 2-1/2 evry other day, the slowly went to 3-2 , then 3-1-1/2 , etc. for say, 4 weeks until i could reduce the 3 down? Does this make sense? Over a week I'd be taking less, but just not every day taking less??? This is so hard for me to understand. The 'getting off' until I get back to the doc is a bother. thanks all, sarahThanks Rain. I am trying to give it a week or two before relenting to being on prednisone forever. I sure do feel awful though. Hi and thanks, you are right I was confusing...oh well. My husband said 'NO!!' you need the amount (what ever it is once a day), so i'll just split, and split by 1/2's or 1/4'sssss, every day. and try to stop eating (over eating! that is...)this is such a drag, have a good one, sarah