Finally off prednisone

Posted by: WendyR

Finally off prednisone - 05/22/11 11:16 AM

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.
Posted by: mig

Re: Finally off prednisone - 05/22/11 01:30 PM

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.
Posted by: WendyR

Re: Finally off prednisone - 05/22/11 02:14 PM

Thanks Mig - it's frustrating that I'm not as good on just mtx as I was on both but maybe that'll improve.
Posted by: mom2many

Re: Finally off prednisone - 05/22/11 03:59 PM

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?
Posted by: WendyR

Re: Finally off prednisone - 05/22/11 05:28 PM

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.
Posted by: ilbcrzn

Re: Finally off prednisone - 05/22/11 08:55 PM

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
Posted by: WendyR

Re: Finally off prednisone - 05/22/11 10:29 PM

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.
Posted by: CharlieChen

Re: Finally off prednisone - 05/23/11 08:15 PM

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
Posted by: ValsMum

Re: Finally off prednisone - 05/24/11 04:20 PM

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
Posted by: WendyR

Re: Finally off prednisone - 05/24/11 09:38 PM

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.
Posted by: Lon

Re: Finally off prednisone - 05/26/11 04:36 PM

Wendy,
You are such a good example.

I love the stuff, but I can't stand the taper!!!

All the best to you?

No summer here yet. My holes for the tomatoes still have water in them...
Posted by: WendyR

Re: Finally off prednisone - 05/26/11 07:06 PM

Thanks Lon!!! No summer here yet either - just damp, cold and windy!
Posted by: rumble

Re: Finally off prednisone - 05/27/11 02:02 PM

Congrats, Wendy. Hope the MTX will continue to help you.

Still pretty cool here, but no rain or tornadoes. Sun is out. 70s today and 80s the rest of the weekend.
Posted by: Michelle70605

Re: Finally off prednisone - 05/29/11 05:52 PM

Oh congrats, Wendy!!! That's good news!! clap
Posted by: Lindyap

Re: Finally off prednisone - 05/29/11 06:20 PM

I'm unable to get off the prednisone. Every time I ween down, I get dizzy, disoriented, and the pain begins behind my eyes and in my neck.

I tried MTX, but I think I came off it too soon (month and 1/2). It made my hair so brittle and damaged...but now I'm thinking I'll have to return to it.

I think I'm going to try LDN before I revert back to MTX. I'll be interested to see how you do on it. Rheumy says it's not typical for spondys to use MTX, but worth trying.
Posted by: Michelle70605

Re: Finally off prednisone - 05/29/11 09:12 PM

Hi Lindy... it seems like forever since we last chatted...how are you??? grin2 Sorry to hear about your MTX/Pred issue...it's a rat race, isn't it?! It's good to see you... smile
Posted by: Lindyap

Re: Finally off prednisone - 05/30/11 07:17 AM

Doing good - finally winding down for summer and have a little time to post. smile

I'm going strict with paleo diet to see if this will help me off the prednisone. So far, not so good. Also adding sprinting and Crossfit. Willing to do everything I'm reading as far as recommendations these days. We spondys are disciplined.
Posted by: Michelle70605

Re: Finally off prednisone - 05/30/11 08:23 AM

I'm glad to hear you are doing well...and good for you on the Paleo diet.. smile I'm rooting for you...and yes, we are discipilined!!! grin2
Posted by: ValsMum

Re: Finally off prednisone - 06/02/11 06:47 AM

Hey Wendy,
I'm at 3.5mg - 4mg pred., I'm excited, but boy does the tapering hurt,on the days I take less, I just can't wait for the day to be over, I'm mostly achey all over.
Hopefully in 6-8 weeks I'll be off the stuff.:)