Tapering

Hi everyone, hope everyone is ok. This is my 1st day of tapering from 15mg down to 12.5 and can already start to feel the pain in my arms starting to return. Do I speak again to dr before it gets really bad again? Or do I wait few days for my body to get used to the drop?.

[DorsetLady PMRGCAuk volunteer]

As it’s the first day on new dose - it could just be steroid withdrawal....if it is, then it should go away after 3-4 days. Unfortunately you won’t know until those days have passed.

So you need to make the decision whether to hang on in there and hope it is steroid withdrawal... or go back up to 15mg.

[Linny3 in reply to DorsetLady]

I keep hearing about steroid withdrawal. What exactly is that.?Thanks

[DorsetLady PMRGCAuk volunteer in reply to Linny3]

It’s when your body is adjusting to the new lower dose - so usually it’s just a day or two of feeling slightly off colour (for me personally it was almost premenopausal- feeling a bit ratty etc), for others it can be more significant, almost like a return of PMR/GCA symptoms. But as I said usually only last a few sprays until your body says - okay this is new dose, I’m fine with that. It why the DSNS plan was originally devised to help stop those feelings/symptoms.

[Linny3 in reply to DorsetLady]

So if it lasts longer than it is a return of pmr symptoms? I have been putting up with pain now for a week but don't want to go back up in pred. though I know I probably will need to.

[DorsetLady PMRGCAuk volunteer in reply to Linny3]

Sometimes it’s difficult to know, but if it’s longer than a week, then I would say - very likely.

You could be one of those people that it takes longer to adjust to new dose, so maybe leave it another week to see.

But the danger is, the longer you leave it, the more Pred you are likely to need to recover the situation.

[Linny3 in reply to DorsetLady]

That seems to be what happens to me, I continue in pain and then have to up the pred considerably to catch up. However, as PMRpro mentioned, if it isn't getting any worse then maybe hold on a little longer before upping the dose. So weary of it all.Thanks for the reply

[DorsetLady PMRGCAuk volunteer in reply to Linny3]

Well you could try reducing by a smaller amount and/or using a slower tapering regime - this is just one - healthunlocked.com/pmrgcauk...

[PMRpro Ambassador in reply to Linny3]

I do know people for whom it lasts a couple of weeks but it does improve slowly. A flare almost always steadily gets worse.

[Linny3 in reply to PMRpro]

So If the pain stays the same for awhile and does not get worse, then continue to hold out before upping the pred? Thanks for the reply

[PMRpro Ambassador in reply to Linny3]

It is worth trying - but not if it starts to get worse.

[PMRpro Ambassador]

I'd say give it a few days and see if it gets worse than now - if it does it will be the dose is too low and you need to go back to 15mg.

And if you DO decide to go back - then do just 1mg next time which reduces the likelihood of it being the change in dose.

[Hidden]

Thanks both, that what I was thinking I need to leave it few days to get used to the change in dose

[PMRpro Ambassador in reply to Hidden]

Just watch out - and if it is getting worse, don't wait too long.

[Doraflora in reply to Hidden]

Hi Karen. I started off on 15mg Pred last March and have been on a slow taper since then. All was going well until I got down to 2mg, when I got horrendous withdrawal symptoms. I.e. feeling headaches, nauseous and light headed.

My GP said yesterday that the taper has been too soon for my body and has whacked me back up to the original 15 mg again. He said just to stay on this for a few days and then drop to 10? Gradually coming back down to 5, but going on a very slow taper this time. Hey ho...

[PMRpro Ambassador in reply to Doraflora]

I think he may have overreacted - the most likely reason for those symptoms was poor adrenal function. I doubt it was withdrawal as generally meant and you were obviously OK in terms of PMR below 5mg. You would probably have been fine going to 5mg which is a replacement therapy dose for adrenal insufficiency - and he has taken you up to a dose where adrenal function is suppressed. It is below 5mg you will need to go really slowly to let adrenal function return. In fact, one excellent PMR rheumy likes to keep patients at 5mg for up to 9 months on the way down and finds the rest of the taper then goes more smoothly.

[Doraflora in reply to PMRpro]

Well, he did say there’s no hard & fast tapering regime, PMRpro. What works for one isn’t a blueprint for all of us he said, as we well know.

I’ll stick to what he says until I get my bloods done next week and see what they show before changing anything.

PS: I’m so intrigued by your knowledge of this subject and all the meds. Do you mind me asking if you have a medical background, or is it just what you’ve learned?

[PMRpro Ambassador in reply to Doraflora]

I've worked in various parts of the NHS or medically related things all my life (not admin). My husband was a healthcare professional, my daughter are a nurse and a paramedic - lots rubs off. And I've been involved with the charities for 12 years or more.

[Doraflora in reply to PMRpro]

Ha, you know a bit then, PMRpro😂

[PMRpro Ambassador in reply to Doraflora]

Sometimes I think too much ...

[Joanbill13 in reply to PMRpro]

You are a great help to all of us. You always have the answer.

[PMRpro Ambassador in reply to Joanbill13]

Mostly because I learned from someone else too!

[Joanbill13 in reply to PMRpro]

I have been lucky to get to 75 and not had to worry about health matters in detail until the dreaded PMR struck

[Rache]

Hi Karen, everyone is different of course. I’m just sharing my own PMR experience. When I dropped from my initial dose of 15mg to 12,5 my symptoms seemed to be returning. I thought I was going to have to go back to 15mg but someone here suggested trying 13.5mg and this worked for me. I didn’t wait too long as PMRpro said. It meant I had reduced by no more than 10% which I found has continued to work for me.

[piglette]

Sounds very much like steroid withdrawal. If it were the PMR it would take a few days. Take a paracetamol which may help. Listen to the comments from the others.

[HeronNS]

My doctor may not have been the best in the world but she was excellent with my PMR treatment - mostly leaving me to myself. When I started to taper it was under her direction. Five weeks on 15 mg. Complete remission of all aches and pains, including things which had nothing to do with PMR! Taper by 1 mg a week, and stop if pain returns. I was fine to 9 mg when I went on line in the middle of the night, found a forum (not this one) and learned I could go back to 10 (Dr hadn't told me I could go back up if pain returned, only to stop tapering, and then she went away on vacation). This I did for a couple of weeks and then, with Dr's approval although I'd have used it anyway, I started the short form of Dead Slow Nearly Stop, which I've used in one form or other ever since. I would say tapering by 1 mg, even if it is as often at the beginning weekly as my doctor suggested, is a lot easier on the system than 2.5 mg from 15 mg which is, you will note, more than our gold standard not to reduce by more than 10% at a time.

[Singr]

Wow that’s a big jump. I go down by 0.5 mg and my whole being goes into a free fall. It’s not surprising to me that you are expecting pain. I’ve to drop by 0.5 next week and I’m dreading it. Family are on alert for next 3 weeks. Good luck. Hope it improves. 🙏🙏🙏

[agingfeminist]

When I got to 15mg (from 60mg) I got a pot of 1mg tabs and cut them in half. Dropped by half a mg every couple of weeks...at 10 mg cut the 1 mg (with pill cutter) into quarters and decreased by 0.25 mg after a week or so....now stuck at 5.5mg (It took over a year)...but happy to be here and will stay on this until I feel better than I do now! Just some pain returning to shoulders...I'll see what happens...

[DorsetLady PMRGCAuk volunteer in reply to agingfeminist]

Getting from 60mg to 5.5mg in timescale you describe is mighty quick.....so just ease up on things for a while.

“Just some pain returning to shoulders” could be the start of something you don’t want - nip it in the bud - and quickly.

I see you mentioned it 9 days ago in another post, a point which nobody picked up on...so if you still have same pains, time to act!

[agingfeminist in reply to DorsetLady]

always thoughtful advice from you...thank you...always trying to ignore anything that feels like the PMR creeping back. I work quite long hours on a laptop in an electric chair...legs up..and then I feel nothing...try to make sure I move every hour or so...the moving of shoulders is a bit problematic...not sure if bad enough to increase dose...but will keep a watchful eye...

[DorsetLady PMRGCAuk volunteer in reply to agingfeminist]

Although we shouldn’t always blame PMR (and using laptop doesn’t help shoulders) - very often it is just that ....and as I said very quick reduction to date.

You may be one of the lucky ones that doesn’t have it as long as others, but for the sake of a few more mgs, don’t risk a flare.

Upping your dose is not a sign of failure...if necessary, it’s sensible.

[Pollynolongerinagony in reply to agingfeminist]

you have given me so much hope, well done, Polly

[FTGU]

Good day to you Karen,I have recently stopped taking steroids. During the taper from 15 each 1mg made me feel like I couldn't move without some pain. The problem was that I was not sure was the cause was, withdrawal or PMR.

Then I thought about it and rather than switch from Dose A to Dose B, 10mg to mg, I phased it over two weeks, alternating doses. As it got to lower levels, 6mg to 5mg for example, the percentage drop was larger, and I could not believe the difference it made. It was not until I discovered this site that I understood that everyone goes through this; it seemed like I was making a fuss over nothing. To cope with these larger percentage drops I phased the change over a longer period, making two days at Dose A, then one at Dose B and so on. In September my by left for the US to go to college and I felt lost, so started digging deeper into PMR and alternatives to the steriod. Because of the uncertainty of where pain was coming from, and needing to be "clean" to see if an alternative worked, I decided to stop the steriod completely, so phased it out completely by December. This sometime took four days at Dose A and one at B, before gradually switching it. There was still pain.

I later found this slow method described, and it seems very obvious really.

So now I am off the steriod. I have pain but know it is due to PMR, and any alternatives I test work or don;t work without the confusion of it. Symptoms are pain in upper arms, I'm unable to tuck a shirt in, pull a T shirt on, get out of an armchair after 10 minutes, and it all gets much worse when the weather is damp. It is mainly a nighttime problem. By day I am a gardener, and have very few problems doing physical work. Bending over digging takes a toll, so I delegate that a bit more.

What came to light last week though might be important to many. I have been refused life insurance because I was taking Pred. The "may"review it in six months.

I have just had blood test ahead of a tele chat with a consultant next week, where their proposed alternative should be revealed.

My overall outlook is hopeful, but there is an underlying pain that I manage with painkillers if it gets too bad, perhaps a couple of times per week. Worst is the response to any greeting "how are you", and the gritted teeth lies I force rather than the horrible truth.

I hope some of this is of help to you, and wish you well.

[Pollynolongerinagony in reply to FTGU]

thankyou for all this very helpful info you've given me hope, Polly

[Irishfurbaby]

I have started tapering but also started taking Turmeric Ginger and Black Pepper in liquid form plus vitamin B12 and this has helped.

[Lori67]

Hi, I am in the same position, diagnosed in June last year with PMR after months of telling my GP things were not right. Tapered once and straight away had a flare up, back up to 15, got down to 8 but things got really bad again. Was on 15 from October to Jan of this year and my GP dropped me down to 10 instead of 12.5, hence to say things not good again. I have never seen my GP face to face due to Covid, never seen a rheumatologist and never had any bone scans, I am 58.

[PMRpro Ambassador in reply to Lori67]

Your GP has no idea what he's doing in more way than one: allowing you to get into a yoyo pattern with dose often makes it increasingly difficult to reduce again. Is there no chance of speaking to a different GP? I know it is difficult.

[Lori67 in reply to PMRpro]

I think this will have to be the next step, thank you for your advise.

[Pollynolongerinagony]

how awful for you, The DSNS method is really helping me take back control, this forum is of massive help and support, I do hope things improve for wishing you well again , Polly

[Noosat]

Don't look for symptoms of failure. If you do, you are sure to find them.

[tangocharlie]

Your body tells you what it needs and it sounds to me like it is telling you that you aren't ready to taper, certainly not by that much anyway, better to try go down by 1 as others have suggested. Withdrawal pains might mean you feel a bit achey, but if specific stiffness in shoulders is returning already that means inflammation is no longer under control, and you need to nip it in the bud or you will end up yo-yoing or even on a higher dose, like I am now. Winter puts extra stress on the body too, why rush it, what's another month or so.