Hi everyone, I am new to the forum but have enjoyed reading about you and your struggles with RA and knowing I am not alone. I have a big question regarding predisone. I have had RA for 10 years and have been on preds for that long also. I stay between 15 and 20 mg a day and have had to go up and ween down when I have a big flare up. I hate the medicine but everything else I have tried I have not been able to take because I have a low immune system and are always getting infection so I can't stay on the new drugs long enough for them to help. I took embel for about 3 years and that was the best I had done but then I started having trouble with my lungs and the doctor took me off. I am sick of being to swollen from the preds. I have gained about 40 pds sick I got sick and my face is a moon face and my stomach is huge. I hate my body and I get so depressed wihen i look in the mirror. I feel like a freak . I feel people are always staring at me and I don't like to go very many places. I have other side effects of the preds. such as high sugar, high blood pressure. I try myself to go down a little at a time when I am feeling not to bad but whenever I try to go under 15 I can not even stand to try to get to the toilet that is something I cannot handle so I go back up. Have any of you been on the preds for that long. Do you swell and feel like I do. Can we take this the rest of our life and the side effects not kill us. Hope to hear from someone. Please pray for me.
Hi CarLa, I'm sorry to hear you're having so much trouble. I don't have any experience with prednisone but I wanted to say that since you've tried everything else you might consider trying AP. You can still stay on the Pred if you have to, while you see if AP works for you.((((Carla)))) I'm so sorry you're feeling so bad. I totally understand! I've been on it for a while and am in a similar position. I've tried Methotrexate, Remicade, Arava, Plaquenil - with no help. The Prednisone is about it - but would like to get off of it some time. I just don't know if I can.
I've also put on weight, have thinning hair - don't feel great about myself. I sweat all of the time and just feel downright ick. I'm going to start weaning off of it a bit to see if the side effects reduce and if I can stand the RA symptoms. I'm still in pain and not feeling great anyway - might as well try to reduce my puffiness. I try not to worry too much about my appearance at this point - I'm trying to get through the days and enjoy them the best I can. If folks don't like how I look - that's their problem.
I feel for you. Just know that you're not alone. I'm considering AP if I can find a doctor that does it. I'm going to research and see - I've heard some good stuff about it! :)
Sending you lots of hugs and prayers. Hang in there.
Jen
Darla,Carla, I am on pred 10 mg daily, and used to be on 15. I have few if any side effects, but I am a man. I am also on enbrel after failing many drugs. I feel for you. Can you take some pain medicine and go down to 10 mg? I hate to offer it but a LOT of people here take ultram or vicodin or darvocet. They are mild narcotics that can help ease the pain so you can have fewer side effects from pred. There is also anti-biotic therapy that may help. Lie down and take it easy. Don't fret about not being able to do much and talk openly with your doctor about the aforementioned options
peace and long life,
Chris
One thing I know about long term use is that you should be concerned about bone loss and what it can do to your bones long term. Make sure your doctors are monitoring that because often it doesn't show it's self until it's really too late. Just be aware. I've had RA for 13 years and just the small amount of predisone and cortisone I've been given over the years has effected me. At 36 I already have osteopenia. That is likely only going to progress.
I think if I was in your position I'd really investigate AP. A doctor that won't even discuss it with you and you aren't responding to so many other things and can't take so many things that can be helpful isn't looking out for your best interest. (U2 Jen) Keep looking until you can find a doctor that will explore these options with you. We have a growing community here that know a lot about this and can help lead you through it.
Welcome to AI. It's good to have you here. Hope to see more of you.
Hi, I agree with Lynn49 that going down just 1 mg, per week, say, is the best try. You must ask for the 1mg and say it is for tapering (that's what my insurance wanted), as the 1mgs cost more or something. They are really worth the effort. I'm at 5mgs a day, trying to go down to 4, etc. LyndaHi Darlene,
My dr too put me on pred. I used it off and on for about a year. As soon as I was done with the pred the symptoms would come back. I too gained weight and I hated how they made me feel. I told dr I refuse to take them anymore. It's a short term fix and for me I thought the bad outweighed the good. It''s so hard to decided what meds to take. Use the internet to study up on them and talk to your pharmicist and dr, you'll get lots of good advice here that comes from people that have had the same experiences that you are going through. Take care, with God all things are possible.
When going down on prednisone it is like a drug addiction in a way. Not the addiction part, but the portion of, "you will get worse before you get better".
I was on it for over a year and had to get off because of side effects. I got worse and it took about a month or longer before i got to a normal point. I got flairs after going down on the pred.
I had to take a 10mg tablet, cut it in half, cut that in half and then cut that in half again and that is how much i went down once every couple of weeks or so. Just so the flairs were not huge.
I have intrinsic asthma, so i can't take things like enbral etc. because of my lungs and am a prednisone girl.
I know it's tough and i wish you the best of health and the right medication for you.
God bless.
Darlene - I was on Predisone for five months last year after my dx. I never figured out what it did for me and it didn't seem to change any of my symptoms. The wean-off was horrifying as I now understand what heroin addicts go through. I have developed full blown osteoporosis (was heading that was anyway) since then. I will never take Predisone again. HI Darlene, you and I have the very same story, I have managed to get down to 11mg with the help of Endone (pain killer), I don't know what is worse the pain killer or the prednisone , they both have rotten side effects. But having said that I have to have boosts quite regularly as 11mg just isn't enough. I am obese, have osteoporosis, glaucoma, irritability, high blood pressure, high cholesterol, cushings syndrome, stress fractures in both feet, easily bruised, mood swings, sweating, the list goes on, all from the pred.People here when the "chat" worked, said that you had to taper off Pred REAL carefully, sometimes even slower that the doctors were saying.
My doctor, who I like a lot, told me in the beginning that pred was like a miracle when it first came out. It was one of the first things that seemed to make a difference for RA sufferers, but as they gathered data over the years, the long term affects were not good. The way he put it to me was that everyday WITHOUT pred, was a good day. Still, I carry a perscription for it and use it when things get bad. But I try to keep the dose low and I try not to stay on it more than a couple of weeks. He's let me kind of set my own doses within a certain range.
I talked with John Hopkins about what i should do.
He said if 5mg of pred works for me, do not take any other drug like methotrexate etc.
He said the side effects of other RA drugs are far worse than taking 5mg of pred.
He also told me in a nother conversation that prednisone 5mg to 7.5 really hasn't been studied and is a "guess" at it making people worse.
There is a person here who has been on quite a lot of pred for over 20 years with no bone problems etc. at all.
He said it really needs long term study with mass amounts of people but instead they have only done it with small numbers which came out questionable.
He did say more than 7.5 shouldn't be taking regularly for long years but that the health problems of mtx etc. was far worse than 5mg would be of pred.
That's just what he told me, i know all doctors have different things. I just ask John Hopkins since they are so into studies of medication and their use.
Pred scares me more than any of the other RA drugs, including the biologics. There was a study of about 20,000 RA patients which documented the causes of mortality, known to be higher than the general population, and correlated it to long term med use. The results are summarized below.
"The analysis showed that 45% of deaths were due to cardiovascular disorders, 29% to lung disorders, 23% to malignancies, and 8% to infections. Prednisone was associated with increased mortality (HR 1.63). TNF inhibitors were associated with reduced mortality (HR 0.69), as was MTX (HR 0.84).
This raises the intriguing question of whether the improvement in CV risk observed in patients taking TNF inhibitors or MTX was due to treatment or reflected a lowering of CV risk attributable to less use of prednisone."
CV refers to cardio-vascular. I know it can be very difficult but it's certainly worth the effort to try to minimize the use of prenisone, given the known risks. The good news is that MTX and the biologics can not only improve the quality of life but can also minimize the increased mortality due to RA.
Janie: although the combination of MTX and Rituximab has been shown to be more effective, it's my understanding that Rituximab as a monotherapy can still be quite effective. I don't understand why you have to take MTX with it. 7.5 mg is a pretty low dose though so maybe it won't cause you any problems.
Alan
Prednisone, the great dilemma for most RA sufferers.