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#443251 - 05/22/11 11:16 AM Finally off prednisone
WendyR Offline


Registered: 12/23/08
Posts: 5231
Loc: BC, Canada
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.
_________________________
Wendy

Rheumatoid Arthritis
Methotrexate, Celebrex, Plaquenil

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#443257 - 05/22/11 01:30 PM Re: Finally off prednisone [Re: WendyR]
mig Offline


Registered: 04/27/02
Posts: 12461
Loc: ON, Canada
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.

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#443261 - 05/22/11 02:14 PM Re: Finally off prednisone [Re: mig]
WendyR Offline


Registered: 12/23/08
Posts: 5231
Loc: BC, Canada
Thanks Mig - it's frustrating that I'm not as good on just mtx as I was on both but maybe that'll improve.
_________________________
Wendy

Rheumatoid Arthritis
Methotrexate, Celebrex, Plaquenil

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#443266 - 05/22/11 03:59 PM Re: Finally off prednisone [Re: WendyR]
mom2many Offline
Copper_AS_Kicker

Registered: 09/18/09
Posts: 1236
Loc: Minnesota, USA
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?
_________________________
Micki
Mom to 9
Dx'ed Ocular Herpes, Sept. '08
Dx'ed AS May '09, suffering on and off since 1979
Dx'ed Non-Hodgkins Lymphoma May '08, relapse Oct '11

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#443272 - 05/22/11 05:28 PM Re: Finally off prednisone [Re: mom2many]
WendyR Offline


Registered: 12/23/08
Posts: 5231
Loc: BC, Canada
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.
_________________________
Wendy

Rheumatoid Arthritis
Methotrexate, Celebrex, Plaquenil

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#443282 - 05/22/11 08:55 PM Re: Finally off prednisone [Re: WendyR]
ilbcrzn Offline
Captain_AS_Kicker

Registered: 11/21/08
Posts: 1970
Loc: Southside of Heavan
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
_________________________
I can not defeat you but I will not let you win

Jeff

Degenrative disc disease 2005
AS 2008 HLA-B27-
Fibromyalgia 2010
Disability 2012
Back to work part time 2013
Enbrel, Cymbalta,Oxycodone, blah blah blah blah

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#443287 - 05/22/11 10:29 PM Re: Finally off prednisone [Re: ilbcrzn]
WendyR Offline


Registered: 12/23/08
Posts: 5231
Loc: BC, Canada
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.
_________________________
Wendy

Rheumatoid Arthritis
Methotrexate, Celebrex, Plaquenil

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#443365 - 05/23/11 08:15 PM Re: Finally off prednisone [Re: WendyR]
CharlieChen Offline
Fourth_Degree_AS_Kicker

Registered: 07/30/05
Posts: 324
Loc: Taiwan
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

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#443423 - 05/24/11 04:20 PM Re: Finally off prednisone [Re: CharlieChen]
ValsMum Offline
Steel_AS_Kicker

Registered: 07/05/10
Posts: 1183
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


Edited by ValsMum (05/24/11 04:22 PM)
_________________________
Diet change has improved my RA. I feel best eating raw veggies and some fruits and avoiding grains, sugars, nightshades, beans and dairy. Sed rate dropped from 65 to 19, but it took over a year.
www.fatsickandnearlydead.com

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#443436 - 05/24/11 09:38 PM Re: Finally off prednisone [Re: ValsMum]
WendyR Offline


Registered: 12/23/08
Posts: 5231
Loc: BC, Canada
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.
_________________________
Wendy

Rheumatoid Arthritis
Methotrexate, Celebrex, Plaquenil

Top
#443541 - 05/26/11 04:36 PM Re: Finally off prednisone [Re: WendyR]
Lon Offline
Very_Addicted_to_AS_Kickin

Registered: 09/11/01
Posts: 8397
Loc: Gillette, Wyoming
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...
_________________________
I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.

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#443556 - 05/26/11 07:06 PM Re: Finally off prednisone [Re: Lon]
WendyR Offline


Registered: 12/23/08
Posts: 5231
Loc: BC, Canada
Thanks Lon!!! No summer here yet either - just damp, cold and windy!
_________________________
Wendy

Rheumatoid Arthritis
Methotrexate, Celebrex, Plaquenil

Top
#443610 - 05/27/11 02:02 PM Re: Finally off prednisone [Re: WendyR]
rumble Offline
Supreme_AS_Kicker

Registered: 01/31/09
Posts: 4496
Loc: NE Oklahoma
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.
_________________________
DX: Psoriatic Arthritis, Osteoporosis, Psoriasis
Meds: MTX since Oct 2009, 15mg/week. Cimzia-restarted after 2 yrs away.
Epidural Steroid Injections x8; Lumbar Radiofreq Ablation x2
SIJ Steroid Injection x3; Bilateral Radiofreq Ablation SIJ x9

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#443764 - 05/29/11 05:52 PM Re: Finally off prednisone [Re: WendyR]
Michelle70605 Offline
Addicted_to_AS_Kickin

Registered: 11/14/07
Posts: 6267
Loc: Louisiana
Oh congrats, Wendy!!! That's good news!! clap
_________________________
Age 7- Kidney Necrosis
Age 11-Bursitis
Age 14-Costo
Age 17-Psoriasis
Age 32-Thoracic Outlet Syndrome
Age 33-Sacroilitis
Age 35-Interstitial Cystitis
Age 40-AS
Age 44-Fibro
Age 44-PsA
Age 45-MS
Age 46-Sjogrens
Age 46-Raynauds
Age 47-PF

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#443766 - 05/29/11 06:20 PM Re: Finally off prednisone [Re: Michelle70605]
Lindyap Offline
Fourth_Degree_AS_Kicker

Registered: 01/11/09
Posts: 313
Loc: Georgia
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.

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#443772 - 05/29/11 09:12 PM Re: Finally off prednisone [Re: Lindyap]
Michelle70605 Offline
Addicted_to_AS_Kickin

Registered: 11/14/07
Posts: 6267
Loc: Louisiana
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
_________________________
Age 7- Kidney Necrosis
Age 11-Bursitis
Age 14-Costo
Age 17-Psoriasis
Age 32-Thoracic Outlet Syndrome
Age 33-Sacroilitis
Age 35-Interstitial Cystitis
Age 40-AS
Age 44-Fibro
Age 44-PsA
Age 45-MS
Age 46-Sjogrens
Age 46-Raynauds
Age 47-PF

Top
#443787 - 05/30/11 07:17 AM Re: Finally off prednisone [Re: Michelle70605]
Lindyap Offline
Fourth_Degree_AS_Kicker

Registered: 01/11/09
Posts: 313
Loc: Georgia
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.

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#443791 - 05/30/11 08:23 AM Re: Finally off prednisone [Re: Lindyap]
Michelle70605 Offline
Addicted_to_AS_Kickin

Registered: 11/14/07
Posts: 6267
Loc: Louisiana
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
_________________________
Age 7- Kidney Necrosis
Age 11-Bursitis
Age 14-Costo
Age 17-Psoriasis
Age 32-Thoracic Outlet Syndrome
Age 33-Sacroilitis
Age 35-Interstitial Cystitis
Age 40-AS
Age 44-Fibro
Age 44-PsA
Age 45-MS
Age 46-Sjogrens
Age 46-Raynauds
Age 47-PF

Top
#444013 - 06/02/11 06:47 AM Re: Finally off prednisone [Re: Michelle70605]
ValsMum Offline
Steel_AS_Kicker

Registered: 07/05/10
Posts: 1183
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.:)
_________________________
Diet change has improved my RA. I feel best eating raw veggies and some fruits and avoiding grains, sugars, nightshades, beans and dairy. Sed rate dropped from 65 to 19, but it took over a year.
www.fatsickandnearlydead.com

Top
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