Off Prednisone?

[Missmymuscles]

Finally did it:-). How long until one feels symptoms returning if they are going to? I just took 10 months reducing from 3mg. (Started at 40!)

[SnazzyD]

There’s no easy answer really. The mystery of why and when autoimmune activity occurs in any one individual doesn’t allow for one I suspect. That’s probably why one is said to be in remission rather than cured. Like many conditions it’s best to take every day at a time and rejoice in one’s health for now, like really everyone should. More easily said than done sometimes!

[DorsetLady PMRGCAuk volunteer]

As SnazzyD says there is no simple reply to that, but some seem to take about 6 months before a return of PMR occurs. But for many there is no return of any symptoms.

I agree you have to take each day as it comes -being mindful but not paranoid.

[PMRpro Ambassador]

How long is a piece of string? As little as 1mg, even half a mg can be enough to control any build up of inflammation if the underlying autoimmune disorder is at a very low level of activity, like the dripping tap being very slow. I know people who have been off pred for 6 months and then the symptoms start to reappear and then they are able to manage it with 1mg or less while others need more,

[Sandradsn]

I've been pred/pmr free for nearly 2 years.I've had Covid twice,stressed over family issues,lost my mum and also a friend.I wondered if all that might have triggered pmr .... I had a few twinges the first couple of months but fine since then!I've lost a stone and a half in weight and feel good.

[PMRnewbie2017 in reply to Sandradsn]

Delighted for you 😀

[Zareda]

Ive have been off steroids for 16 days now and I am starting to feel all of those too familiar pains. Doesn’t look too promising to me, but I’m trying to see if it’s just an adjustment period. I much preferred how I felt on 1mg. I hope it’s smooth sailing for you.

[DorsetLady PMRGCAuk volunteer in reply to Zareda]

How did you stop? Cold turkey or using a slow taper that we talk about? And did you go straight from1mg to zero, or via 0.5mg?

Uncoated white tablets can be cut to get 0.5mg -and as many will testify at such low doses half a mg really does make a lot of difference.,,

[Zareda in reply to DorsetLady]

I went with the very slow taper. I did 1mg for several months, then went to 1/2mg, then every other day. Had sone glitches along the way and went back to 1mg. Eventually I got off by doing 1mg for a week, then 6 days, 5 days and so on until I got to zero. I didn’t have any trouble by the time I got to that point, but now that it’s been almost 3 weeks it’s not feeling that great. I’m sure some of it is general arthritis pain that the steroids was taming, but I’m now getting that nasty PMR feeling in my shoulders. Rheumy wants me to get bloodwork & see him in 8 weeks. I’m starting to think I won’t make it til then.

[DorsetLady PMRGCAuk volunteer in reply to Zareda]

Hmm, disappointing as it is, I think that’s telling you that your PMR is still chugging away -albeit not causing much issue -until you come off the Pred.

So back to 1mg initially -although once back under control, you might 0.5mg is sufficient on a daily basis.

After a few months give it another go….when hopefully it will work

[Zareda in reply to DorsetLady]

Fingers crossed!

[Stanca in reply to Zareda]

I do sympathise Zareda . I am trying to go slowly down from 2 mg daily and I am currently taking 2mg one day and 1 mg the following day ( after about a month if 2 one day and 1 and a half the following day) but I am struggling . Today I felt like a 90 year old ( I am 68) and could barely cope with a one hour walk. My knees were killing me but I wanted to do it . I love walking !

I think I shall have to up my dose a bit ( maybe back to 2mg) . It’s perhaps a question if trial and error and you may well be right in saying that steroids were taming some general arthritic pain….

I send you all my best wishes

[Zareda in reply to Stanca]

You are right…..it is very much trial & error. I bounced back & forth on very low doses for quite awhile. I still believe I can get there and I’m hoping you can too! Take it slow and don’t over do it with the walking. I think the best advice is to listen to what your body is telling you. Good luck! I wish you well.

[PMRpro Ambassador in reply to Zareda]

You will get there - but it entirely depends on the underlying cause of the PMR having burned out and gone into remission. Without that having happened you need ENOUGH pred to manage the inflammation. You aren't heading relentlessly to zero, you are looking for the lowest effective dose. You are lucky - it is very low.

[PMRpro Ambassador in reply to Zareda]

If it were adjustment then I'd have expected it to appear earlier - it will get worse if it is PMR still there and I think you would be better going back to 1mg before it builds up and then tapering that last 1mg very very very slowly!

[Zareda in reply to PMRpro]

I agree with your perspective. I am contemplating going back on 1mg before it gets out of control and I have to go bs k to a higher dose. It’s just very disappointing.

[PMRpro Ambassador in reply to Zareda]

I think what happens is that the autoimmune part cycles in activity and if you happen to be at a low point when you get off pred you can have a nasty surprise when it gets that little bit more active a bit later. It is a very devious disease! But it could be just the lack of steroid supporting adrenal function - have you been doing a bit more?

[Zareda in reply to PMRpro]

I was on 1mg for several months then gradually tapered to zero. Now it’s been almost 3 weeks at zero. I expected to feel something, but I was hoping it wouldn’t increase which it does appear to be doing. I’ll give it another week to see if it stabilizes, if not then it’s back to 1mg

[Zareda in reply to PMRpro]

I was doing more the week before I went to zero but I have since backed off. Maybe my body is playing catch up right now.

[PMRpro Ambassador in reply to Zareda]

1mg is really still a fair bit when you are talking about PMR! Even 1/2mg can be plenty to mop up a tiny bit of inflammation - the problem is when that drip of inflammation isn't mopped up and it builds up again,

[67Blue]

I like to think I will not have a reoccurrence, but not holding my breath. 4 months since I stopped, after 2 years on pred, have been following slow tapers from the forum, with zilch dr help and the rhumat let me get on with my own thing after me not obeying the 40 mg to 0mg in 18 months I said I wouldn't be managing to do. And my Dr had said when I was down to 7 mg just get off those steroids when I rang with a request for help and said bearing in mind i have GCA/PMR and he said you Had it.

My body often feels wobbly and legs jelly like and have stiff joints till I get moving about, but hope that is just normal for me, as I get my adrenals functioning and i do have a bit of a back problem I need to address. I took AA for a start ( standing up as requested on the pack).but was told I could leave off when I got to 5 mg steroids. --- 4 months later than I could have left them off if my initial requested Dexa scan app hadn't been lost in the post???

My main problem is the Acid reflux, I never consulted anyone about reducing the Omeprazole but did do a bit of a taper over three weeks, however when I realised it wasn't working a very junior dr suggested Gaviscon for a week, the regular one. No use, so a more senior sounding lady suggested over the phone going back on the omeprazole for a month with Gaviscon at night as well and then hopefully reduce the dose of Omeprazole by half. I'm afraid I'm going to have those problems forever now, I did originally have slight reflux problems, but pretty much ate sensibly and none of lots of things I knew triggered it.

When i stopped the steroids the shakes the rhumat thought maybe Parkinsons (without even discussing them )stopped, as did the unexplained rashes. So I realise how difficult it is for anyone to come up with the answer you are looking for. Maybe I wasn't due to leave off when I did. But having got this far will try to sort it without going back on.

[remission]

congrats, I’ve been off prednisone for over two years now…I don’t spend anytime wondering or asking when the other shoe might fall, in. My mind it won’t…..I spend my time being super thankful for my health and doing as much as I can and things I love doing….you are going to be totally fine, enjoy…

[67Blue in reply to remission]

Well done and good attitude to have, I guess I always have been a worry wart, been pretty healthy till GCA/PMR stuck in the pandemic so it was a shock, may not have felt so bad if I had other things and people to take my mind off it.

[Zareda in reply to remission]

Kudos to your positivity & high spirits. I’m hoping to be like that too, but since this is my first attempt at getting off I’m worried I’m going to end up like I was 4 years ago. Hopefully this will not be a wasted effort. I really want off this merry go round. Tylenol is helping to manage symptoms right now so that might be a good sign.

[remission in reply to Zareda]

my best advice, that has served me well….don’t aim for anything you don’t want to hit

[papadapadoo]

Could you try kefir? It got rid og my GERD. Powerful healthy probiotics.

[67Blue in reply to papadapadoo]

Thanks will try that, but I do take Actimel and Onken Yoghurt so thought I had things pretty well covered, I guess I just panicked once I got a sore throat which wouldn't go I thought that was me forever. I will have a look into Gerd, I never thought I ever had anything like that till I tried to stop the omeprazole, (hadn't even heard of it) but have just been catching up on some of the other posts and will suggest the other named PPI's PMR pro has been suggesting to my next Dr and also I did have a read of the web address I think it was SnazzyD put up. That hasn't been something on my agenda, I'v been though a lot of the others.

[Pmrsucks]

Like others have mentioned it's hard to say. My first round with PMR lasted 3 and half years and I was in remission for 6 years. When it came back it lasted for 1 and half years and I've been in remission since September 2018. I was in pretty tough shape the first time around and made a lot of lifestyle changes that helped me the second with PMR, eating healthier and more exercise. I'm hoping it will help me keep the PMR at bay. Sounds like you are doing great! Keep up the good work!

[blueisgreen]

Me too. After 8 years with PMR I am now prednisone free! I too have concerns about it coming back. But before I could celebrate I was diagnosed with Fibromyalgia . In retrospect I'd rather have a diagnosis where a pill can take away all the pain. Now, with Firbro, I'm taking a variety of drugs that deal with the neurons in your brain. There is no cure.

[Mlangston]

With any luck never!! I've been in remission for over 6 years now so...... carpe diem!