decreasing pred | Arthritis Information

 

Hi,

reegie2008-11-29 13:38:26REEGIE, IN DEED YOU WILL FEEL THAT WAY. I HAVE BEEN ON PREDISONE 20MG OR EVEN HIGHER FOR 2 YEARS NOW AND I TRIED TO DECREASE IT HAD HAD MANY PROBLEMS SO I WENT BACK ON THE 20MG AGAIN. I DON'T THINK I WILL EVER GET OFF. I HAVE TRIED MANY TIMES BUT NO LUCK ON GETTING OFF . AAS SOON AS I DECREASE IT 2-1/2 MG I GO INTO SUCH BAD PAIN ALL OVER. BUT YOU HAVEN'T BEEN ON LONG SO I HOPE YOU CAN GET OFF THIS DRUG . IT HELPS BUT DONE THE LINE IT HURTS TOY MORE. YES YOU WILL FEEL LIKE CRAP WHEN YOU DECREASE THIS DRUG. JOANIf you have only been on pred for a short time, you can decrease fairly quickly.  Just make sure you follow your dr.'s directions.  It is very hard to get off pred if you have been on it long term.  I was on it for about 5 yrs.  The highest dose was 90mg and then everywhere up and down on the scale.  You will feel it when you decrease it.  I know it makes you feel good but, if possible, try to get off it.  For many people though, pred is what gets them through the day.  It is a drug we love and hate. I guess that is my question, I said no to pred so many times and then finally took it and felt like a normal person for a week, I loved feeling like normal.  It makes me sad that I can't officially get a dx because of no swelling, rf high, but rd says until swollen joints I think it's just tendonitis.  My 1st rd said definatly ra but I wanted a 2nd opinion and I got tendonitis and pred.  I am just tired of the run around, what is wrong with me then?  I know it is not tendonitisReege- I was put on 40 mgs prednisone during ny severe onset and overnight I felt like a million bucks. I started tapering a month later and honestly I have to say the last time I felt like I did not have  RA was at 15 mgs. I am down to 2 and although I don't feel great- I have read plenty of posts here to make me feel like I have nothing to complain about....
I wish you the best of luck.

Doctors sometimes use pred. as a diagnostic tool.  If you respond well to it and then feel miserable after you come off, it can point towards RA.  At least, that is what I have been told.

When do you see the dr. again?  Make sure he/she knows how good you felt when on the pred.

rocckyd I have make a follow up appt on Mon so hopefully I can get in soon.  Wanttobe I am sure compared to other people here I have nothing to complain about either.  It's just for the first time in a year in a half that I felt good.  I did get to take my little guys to pick out a christmas tree and to see santa while feeling good.  I enjoyed it more than they did I think!!Hmmm...it is true what Rebecca says, that if you have only been on a short course you usually can decrease fairly quickly. Since you are having this reactions maybe you need to do it more slowly decreasing in smaller increments, says 1mg a week. I would be discussing both options with your doctors as soon as possible.

The nasty and fabulous thing about Pred is it gives us tons of movement back often and when you have trouble moving all the time, that feeling of being able to do so again is almost euphoric. Problem is the long term use of this drug is a real problem for your body particularly in terms of osteoporosis with extended use.

And I have never seen a drug with more side effects than this one. I have endured everything from not being able to heal any kind of infection to a completely spaced out disassociated feeling that make me feel like I was living in a bottle and went on for six long weeks.

Tread carefully here with as much research as you can to make an informed decision for yourself and what right for your body.

Cordelia, thanks for the info!  I know that I don't want to be on the pred anymore I just really want to know if it is ra.  I am positive that it is (my father has it also).  Feeling good was the best feeling ever though.  Especially because I could keep up with my little boys, well almost.

I am having a brave moment and have cut down to 5 mg for a week now. I have been on pred for a year now. I need it but i am sick of it at  the same time. Just let your doctor know how you are feeling.Reegie, it sounds pretty obvious that it is RA. Especially since your Dad has it. When there are hereditary indications they are usually obvious like...dah, my Dad has it. I don't know why you don't have a dx Reegie but sometimes RD's are slow to dx because there are not sure which type of inflammatory arthritis it will turn out to be either RA or PA. They don't always explain that to patients though.

My Neve was nearly three when I was dxed and I couldn't pick her up. You are not alone in the problem of small children and not keeping up with them. She is now nearly seven and I still can't keep up. Thank you so much Cordelia for your kind words.  It is very hard with small children, especially right now with 4 1/2 and 2 1/2 year old boys who are always on the go.  It is so nice to talk to people who understand, thank you.  And it is so frustrating not to get an official dx, especially since my dad has it.  Will I ever get inflammation, not that I want it but it would almost be an answer!Reegie where are you hurting? Have you tried getting an MRI. It may give you some answers.That is you may have some swelling that the doctor can not see.

Milly, both feet, ankles, knees, elbows, wrists and sometimes fingers.  I had an mri on my feet and ankles a year ago at onset which didn't show anything.  Do you think it could've changed by now?  I did, but current rd didn't say much about it.

Hang in there, Reegie. Trust me, it will get easier with the boys.

And teach them to help you manage also. Be real with them. This gives children a sense of community and almost ownership of Mummy's illness. It will help them grow into self sufficient, compassionate adults. 'We are a team and we all pull together." You DO NOT have to be strong, efficient Super Mom", there is no such thing. It's a myth.

And funnily enough, most Mom's are running around trying to be Super Mom and they don't have RA, when it's impossible and such a high expectation no one can achieve it. But it's a cultural and societal thing placed upon us. Do whatever you can to step back from that craziness.

Things will get easier once your youngest hits about three and a half. Neve was a bouncy nightmare until then. Not fun with RA. Yikes!

Not having a dx must be frustrating when it seems obvious.
Reegie, Want to let you know there is nothing wrong with wanting a DX. just because you don't fit in a nice RA Box for DX purpose doesn' t mean nothing. I hope you don't have it. But I really sincerely hope you get a DX soon. Something will show up...it always does...or maybe it will resolve. But the thing is they are treating you. So that is good. Take care.

 

I personaly have a love hate relationship with steroids....mostly hate.

Not knowing is the most difficult part of dealing with any kind of illness, hope you get your answers soon!

At my very first rheumy appt I was given a rx for pred. and went home and read all the side effects and chickened out. When I went back for my two week re-check, we reviewed my blood, but he was irritated I didn't start the pred. so I said I would. I took it and felt like a million bucks. It was the first time in forever I could move and I had so much energy, I was giddy and couldn't wait to go back and tell him how wonderfully the med was working. So, I go back and tell my rheumy and he says "great! now I am going to wean you off in the next 1-2 weeks" I freaked out on him. I mean, why the heck would he give me something that made me feel so wonderful and then take it away? I didn't understand then, but I sure do now. a couple of years ago, I had to go back on it for a really  bad flare and it took me a year and a half to get off it. I went down the only way I could which was to do alternate 20mg and 19mg every other day for a week, then do 19mg for a week. Then alternate 19mg and 18mg for a week, then just 18mg for a week and so on.  Against my rheumy's advice, but I did it slowly. When I got down to 5mg, I reduced by 1/4 of a mg using the same schedule. Like I said, It took me a year and a half and when I was finally off it, I told him I never wanted on it again. He wanted to give me a medrol pack in Oct, but I asked for a cortisone shot in the derierre instead, but I was in the car accident a few hours later so I never was able to find out if it worked. I'm having surgery on the 9th and after I am healed, I think I will ask for a pred pack.

When it took you so long to get off could you explain to me why, I have heard so many people say that but I guess I don't understand, was it because you were on it so long?

Thanks for the info!!

Reegie, basically why it takes so long is you have to wean so slowly. I am weaning at 1mg a week.

One of the main reasons you have to do it slowly is your can 'flareback' terribly. Coming off too quick can send you into the worst flare. I have experienced it myself. Then you have to up the dose again and repeat the whole thing.

I think the other reasons are side effect related, I presume the fast you do it the more likely reactions will happen.

The only quick way of coming off Pred is when you doctor puts you on it at a high dose for a short time...example - 5 days at 50mg then 7 days at 25mg and stop. This sometimes works and sometimes doesn't. Again you can flare also but short high doses can be useful and you aren't on it for very long which is always a good thing.

Thanks Cordelia.  So my 20mg for 7days, 15 mg for 7 days, 10 mg for 7 days and 5 mg until gone is normal for a short dose?

Reegie,

 

When I do short courses of prednisone, I always ache for a day or two when I reduce the dosage.  Then it levels out and I'm o.k.  Usually.

 

I also did not have any swelling for about the first year of my RA.  My RD diagnosed it based on high positive test results and my pain and fatigue.  I also presenting with a migratory pattern for the first six months or so.  We may not all present the same, but it doesn't mean we don't have RA.

 

Yep, Reegie. That is exactly right, what you have done is normal for a short course.

Also I think Kweenb is right about being achey for a few days when you reduce the dosage. That is very normal and probably if you persist the aches and pains will settle down

Thanks so much you guys! that sounds like a good schedule for a short dose. If the aching becomes intolerable or lasts more than two days, my rheumy would tell me to go back up a couple of doses and taper slower, which is the schedule I had. I was on it for a bit over a year before I started tapering.

 

best wishes, I think you'll do just fine!

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