Two days of zero pred

[daworm]

So what am I to expect as far as withdrawal symptoms?? Been on pred for PMR since sept 15th 2017...20mg ....been tapering up and down according to symptoms since...mostly 1 mg and then 1/2 mg for past couple months...I want to see if any muscle aches and pains are pred related so I’m off since Saturday Aug 1...not sure what to expect...what I read is side effects can last a long time and they sound like the same effects pred and PMR can cause...hopefully not many..

[TheMoaningViolet]

I am so happy for you. I hope it all goes well. Vx

[DorsetLady PMRGCAuk volunteer]

You shouldn’t get side effects from lack of Pred, in fact you shouldn’t have had anything much recently anyway with being on low doses.

What you might get are effects from your adrenals not working at full tilt, so maybe some fatigue, and just a feeling of not being 100% on top of your game - and that can last anything up to a year in some people.

Plus of course, you need to be aware, but not paranoid about your PMR resurfacing if it hasn’t truly gone into remission.

Just take each day as it comes, and good luck.

.

[daworm in reply to DorsetLady]

oh ill be ready....right back on some prednisone...im not afraid of it anymore like I was 3 years ago...

[DorsetLady PMRGCAuk volunteer in reply to daworm]

Good to be prepared, but don’t assume every niggle is PMR. Everything has aged a little in 3 years!

[daworm in reply to DorsetLady]

Oh I know that!! My OA isn’t getting any better that’s for sure..I’m back taking Mobic (meloxicam) for that, works so far...don’t like it though...

[HeronNS in reply to daworm]

Please note that nsaids interfere with cartilage regeneration so should not be taken long term. I've been suffering quite a lot from arthritic pain lately but if I can manage without taking painkillers for it I will, becasue in the long run I'll be better off. Ouch, Moan. Creak. At least, that's what I keep telling myself.

[daworm in reply to HeronNS]

I know, I don't like them much myself and after this first week I probably won't be taking the Mobic , acetaminophen works well at times too but the best is just nothing..

[Rokerman in reply to DorsetLady]

That ‘s so easy to forget!

[DorsetLady PMRGCAuk volunteer in reply to Rokerman]

😉

[daworm]

I sure hope so!! My Dr has been informed via the patient portal so he knows whats going on...time to move on!!! But with caution..if I need to go back on I will, no biggy

[SnazzyD]

Bear in mind that adrenal insufficiency can give you vague aches and pains, but hopefully you’ll know if it’s PMR. At this stage Pred doesn’t really give any side effects of pains but the lack of it can be felt.

[SheffieldJane]

It sounds like you did it nice and slowly. I would imagine that it’s energy levels and general fitness that needs to catch up. I haven’t been in your fortunate position though. I hope it goes well!

[-LJ-]

All great advice! I’ve been off for almost 2 years now. Just take it a day at a time and don’t rush right back to prednisone...try an Advil first! I’ve never needed it again. But I do have pain once in a while and I briefly wonder if it’s coming back! But I think it’s more virus stay home pains!! Too much sitting is still painful. Congratulations and hang in there and stay connected here!

[PMRpro Ambassador]

A couple of people I know who have been off pred for years (literally, IRO 7 years) have said they didn't feel entirely "right" for about a year but it wasn't anything definitive, just aware they didn't feel 100% physically. Usually when doing the gardening knowing the people it was!!

[daworm in reply to PMRpro]

thats one of things I've read about being off of prednisone, effects can take a year or so to feel "normal".....we'll see...

[CarolF1312]

That's wonderful news, so happy for you. It really helps me to know there is light at the end of the tunnel.

Thanks for sharing and good luck.

[Jackoh]

Wonderful news. Long may it last!! X

[Rokerman]

That’s a good taper - it’s taken me a year longer. Now contemplating the leap of faith to stop altogether.....! Let us know how you get on.

[daworm in reply to Rokerman]

ill let everyone know....this is actually the second time with PMR, the first time years ago when I was still working no one diagnosed it as PMR, a rheumy said I "probably" had thyroid problems or a virus but it did get a short faster dose of prednisone that I quickly tapered off of...that time was bad because of no dr. coming up with PMR so I suffered for a couple months trying nothing but Tylenol and Norco's which didn't do much...this time my new dr, with my help cuz I researched it a lot, figured PMR right away (a week after he said it was bursitis).....the miracle of prednisone is now over!! For awhile at least!!

[Weegie51]

Hi

My last pred was taken on 6th March this year. I suspect pred masked other underlying issues such as osteo-arthritis and general aches associated with ageing. My OH and I walked the first 4 stages of the John Muir Way in Scotland last week (some 50 odd miles) over 4 days. Stage 2 was tough at 18 miles, lots of hills all while carrying a backpack weighing 6/7 kg. I was sore in hips after - but you become aware that it's a different pain to PMR. I am sure you will have a few twinges yet - not necessarily a sign of PMR though!

Good luck - hope you enjoy and remain at zero pred!

[daworm in reply to Weegie51]

yes, my knees and hips and sometimes shoulders are all age/OA related from years of physical work...and just aging....sounds like your doing well...hopefully no flairs for me, I've had enough for awhile..

[HeronNS]

I tapered to zero using DSNS with zero my new dose. Took three months to do it. No question there would be no withdrawal pain. Fine for three weeks, then the fourth week, before I caved and went back on low dose of pred, was increasing symptoms until they got quite severe.

[daworm]

ill go back on in a heartbeat if I think its PMR coming back around...ill be ready..

[Lonsdalelass in reply to daworm]

Well done you! Fingers crossed all the way.

[Ladybird25]

I was told by my holiday insurance company that I’d need to be covered for pred for a year after stopping it. I wasn’t sure why, but reading these answers, I understand now. It needs to work its way out of my system. I’m currently on 2mg. Well done and good luck going forward!

[OutdoorsyGal]

You may experience some bumps along the way, but unless you have a severe flare up, you may want to try to tough it out.

I found that I had LOTS of ligament and tendon issues, plus generalized muscle weakness. I’ve been off prednisone a year and a half, but after a few weeks my hands, wrists and forearms were so painful I though I had carpal tunnel or ulnar tunnel - or both! Hot water, hand massage, naprosyn and time have made these issues go away.

My personal physical therapy routine has been raking gravel on the beach and picking up seaweed! I’m not big on organized exercise, but I got all the bending and twisting exercises I needed from returning to daily life.

I don’t ski as hard or bike as far as I did pre-PMR, but I’m in a good place. And now I’m easing off the naprosyn. I was taking one in the am and one at bed time, then just one at bedtime, and now I’m going without.

I hope your rehab is a success, too.

[OutdoorsyGal in reply to OutdoorsyGal]

PS be careful not to overdo things. Take a rest day or two between active days. Delayed onset muscle soreness can really pack a wallop on day 3 if you gardened hard on day 2 because day one went so well. 😉

[daworm]

That’s one reason why I’m getting off of prednisone, muscle and tendon weakness, etc....in fact I tried to play a game of softball and immediately pulled my abductor muscle or tendon in my leg...black and blue from hip to knee...Dr said prednisone makes muscles and ligaments prone to tearing...I’ll take it much more carefully for awhile!!