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Weaning off of prednisone

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Rheumatoid Arthritis
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Posted 9/29/2014 3:47 PM (GMT 0)
Ok so I am weaning off of the prednisone... I have been on 20 mg. for about a year or so now. I have weaned down to 5mg. and I am on my second week of that now. I am having alot of pain but I know that goes with the weaning process. The thing I am wondering about is the swelling in the hands and face. I have notice quite a bit of that and was just wondering if it is a normal side effect of the weaning process? Anyone that can elaborate on the is for me? I have no issues with swelling in the throat or shortness of breath so I'm not so worried about that. I am just so tired of gaining weight and I am having a hard time cause I cannot exercise due to the RA and the problems I am having with that. I am on Rituxan infusion and do not have another infusion until december. I am so happy to be weaning off of the prednisone as I had started having problems from being on it so long. Thanks for any help anyone can give on this. My rheumy is a good one and he keeps very good check on everything.
Peggy
Posted 10/2/2014 2:51 AM (GMT 0)
Hey Peggy,

I started on 40 mgs a day for months and then it was a long slow wean that took 1 1/2 years.
At 10 it was a battle because I had pain that I had to work thru. It would take 2 to 4 weeks for it to level off when I made a drop. The lower you go the harder it is. It was just 1 mg. every 2 to 4 weeks from 10 down, the less I took the more weeks it took me to be able to drop 1 more mg.
Hang in there! It was such a relief to be off all together. Weight was easier to maintain, muscle wasting went away, etc.
Posted 10/2/2014 11:29 AM (GMT 0)
have you dropped down too quickly ? ask your Doctor if you can increase it to perhaps 7.1/2 for a while then go to 5
swelling is Not a weaning issue I'd defiantly tell your Doctor, How long have you been on Rituxan ?
Posted 10/2/2014 2:23 PM (GMT 0)
BadDay I started rituxan in may of this year so Ive only been on it for about 4 months now. My dr said swelling was from prednisone not sure why but they said it was.... I am doing better today I think maybe the drop is leveling off. I am going to stay on the 5 mg. for two more weeks. Then I will drop down to 2.5mg. and see how that does me. My doctor is the one that told me to drop down 5mg. at the time he said maybe 2 to 4 weeks at the same. I have dropped down every two weeks. I am just so ready to get off of this mess. Swelling is better today as well. Stiffness is better. So I am hoping that my body is adjusting to the 5mg now. Still I am going to wait two more weeks before dropping down again. Thanks for all of your help and advice. WearyRAsufferer thanks for much for your advice as well. Im thankful to have my friends on this site to help. Hugs to you all
Peggy
Posted 10/4/2014 12:14 AM (GMT 0)
im glad your feeling better I didn't know you can get swelling from weening off prednisone sorry to mislead you but I always check with doctor for anything like that as unusual swelling can be the beginning of many different things. it is good your dropping dose Slowly Don't try to hurry it, stick strictly to your doctors advice it seems like you have a good Dr
I'd Love to get off Prednisone but having been on it for over 25 - 30 yrs. there is No Way I can stop it now as my body no longer produces its own so I just fluctuate in dosage from 50mg to what im on now 7.1/2 mg and that's the lowest I've ever been
Keep trying and get off it as it is a bad drug to be on long term
Posted 10/4/2014 1:51 AM (GMT 0)
Patience was the key for me with this. I was on it for a year and a half and it messed up my cortisol levels really really bad. I took a cortisol supplement when I was down under 10mg/day and it did help me to get through the worst of it but it took what seemed like forever to be free of it.

Every time I lowered my dosage I had stomach and muscle cramps and then would have inflammation for the next few weeks. When I was under 10mg/day I lowered my dosage only by 1-1.5 mg and then would wait until I was out of the cramp/inflammation phase and give myself an extra week to get used to the new dosage before I went down again. This generally took a month each time I dropped the dose. I had to increase my dosage a few times while doing this but I knew that it was just temporary and that eventually I would get through it.

I hope you feel better. It can certainly be a long road but for me it was well worth it. I am so glad to be free from that drug, I hope that I never have to take it again for that length of time. Hang in there!
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