Kickas.org Forums Rheumatoid Arthritis General Discussion #1 RA Web Support Group Finally off prednisone

I've finally worked my way off prednisone after being on it for almost two years.

I'm definitely not as good as I was when I was taking above 6mg daily but I'm afraid to stay on it long term because of the other health risks. Methotrexate is working but not as well. Prednisone is such a miraculous drug - I so wish it didn't carry the sneaky long term risks.

Hey, congratulations on this feat, Wendy! I know it's not been an easy road for you to work back off after 2 long years. I hope your RA has learned a lesson and that the inflammation might stay at a more tolerable level.

I wasn't able to take it myself but I can sure empathize with wanting the good effects without the bad! I'll keep my fingers crossed that you'll be able to get by without it for a very long time and avoid the long term risks.

Thanks Mig - it's frustrating that I'm not as good on just mtx as I was on both but maybe that'll improve.

Good job, Wendy! I'm still trying to get consistently below 7.5mg and I've been on it nearly 3 years. It feels like such a miracle drug, well, except for all the crappy side effects with long term usage.

Are you still open to using it in short term bursts occasionally?

Absolutely - I've retained a supply so I can. But I'd like to go at least a few weeks without to make sure it's out of my system and my adrenal glands are not dependent on it at all.

Congratulations Wendy

I know how hard it must be to be off a drug that helps you so much. Hope you can stay off of it for a while. I was on 20mg. a day before my SI injections which did little good. I saw my doctor at a social event and he saw me leave near the end so I could sit on a couch in the lobby. He asked if I felt better on prednisone, I said yes and he said we will need to talk.ARRRRRGGGGG.

Keep fighting Wendy, I know you can do it!!!

Good Luck

Thanks Jeff. I wish it was possible to keep taking it safely for years. I think of Possi, though, who had been on it for many years and was experiencing some terrible long-term ill effects.

Congratulations.
I hope I can get off the prenisone as soon as I can too.
I am now on 5mg a day.
I dont take at all when my pain is very low. Usually, I take
5 days/week.

I wish you the best.

Charlie

CONGRATS Wendy !!!!!!
Ok, I'm officially jealous. Last week I was down to 2.5 on one day and 5 the next, then I got one big fat swollen knee one morning, the kind you can't bend. So I am going to be more patient and just try 4mg for 2 weeks then 3mg for 2 weeks, until 0
Tell me how you did it, Did you alternate or just go down steadily? By the way, have you ever gotten that shakey feeling while on prednisone if it's been too long since your last dose?

Again, congrats.
Sheri

Hi Sheri,

I did it very, very slowly. I reduced just 1 mg at a time and then waited six weeks or more before dropping another mg. My goal was to let my body think that nothing was changing! My doc wanted me to go down by 1/2 mg at a time but I wasn't able to successfully cut the tiny pills in half. So each time I was ready to go down by another mg I used the following schedule (using going down from 4 mg to 3 mg as an example):

Day 1: 3 mg
Day 2: 4 mg
Day 3: 4 mg
Day 4: 3 mg
Day 5: 4 mg
Day 6: 4 mg
Day 7: 3 mg
Day 8: 4 mg
Day 9: 3 mg
Day 10: 4 mg
Day 11: 3 mg
Day 12: 4 mg
Day 13: 3 mg
Day 14: 3 mg
Day 15: 4 mg
Day 16: 3 mg
Day 17: 3 mg
Day 18: 4 mg
Day 19: 3 mg
Day 20: 3 mg
Day 21: 4 mg
Day 22 onward: 3 mg

So it would take 3 weeks to slowly go down 1 mg. Then I'd carry on for about another 6 weeks, or even longer if my pain level was up at all. And then start the process over again. I never skipped doses so I don't know whether I would have felt shaky. I had been warned of serious side effects if I missed doses.