To taper or not to taper. That is the question.

[Cact]

I usually manage to find answers to any queries I might have in the daily posts or in the FAQ’s, but I need a bit of advice on this one please.

Myself & my husband both tested positive on Lateral Flow tests on Jan 1st. No major symptoms, just a cough & stuffy nose for me, runny nose for him.

I’m on 7mg of Prednisolone & on the slow taper of .05mg every 4 weeks with no problems. My next taper to 6.5mg is due this coming Monday 10th, & my question is should I go ahead or should I wait until the lateral flow test shows a negative result? All 7 tests have been positive so far, I try to do them around the same time every day (6pm) so today’s one not done yet.

I think I might guess what the replies may suggest I do, but just thought I’d ask anyway in case other people might have the same query. I’d like to thank all you wonderful people on this forum for your sound advice & support, I’d be lost & alone in my battle with PMR without you 🥰.

[DorsetLady PMRGCAuk volunteer]

I would be inclined to leave the next tapering for a week at least maybe 2.

It may not be necessary, but why take the risk and jeopardise the success you’ve had to date for the sake of a couple of weeks…it’s nothing much in the great scheme of PMR duration.

[Cact in reply to DorsetLady]

Thank you, that was my thinking as well, just needed confirmation I suppose 👍

[Bcol]

Hi Cact, agree with DL and would probably leave the next taper until at least two weeks after a negative result, even though the test comes back negative it doesn't necessarily mean your body is not still fighting off some the infection. Even leaving it a month as DL says is not very long in the treat scheme of PMR/GCA.

[Cact in reply to Bcol]

Thank you Bcol, I’ll forget about the tapering for the next 2 weeks at least & see how I feel.

[SnazzyD]

As Covid can be full of surprises I’d wait at least a couple of weeks. In the grand scheme of things it won’t make any difference I wouldn’t have thought and your immunosuppression, if any, from 8mg won’t be much more than 7mg, so not much benefit there.

[Cact in reply to SnazzyD]

Thanks for your reply SnazzyD, you all give the same advice so I’ll stick with that, it’s what I was thinking myself as well.

[HeronNS in reply to Cact]

I also note your dose is 7 mg, and that can be a sticking place even when you aren't dealing with a global pandemic. Another reason to go slow. Do let us know how you are as the days go by.

[Cact in reply to HeronNS]

Thank you Heron, I won’t rush to get to 6.5, 👍

[Hidden]

Agree with all above. Really hope you have better luck that I recently have. I too am using the very slow taper. I managed to get down to 6.5mg, then tried 6mg, that's when GCA showed it's ugly head last Sunday....thinking I'd start the NY on 6mg. Sadly, like before that didn't happen. Pain in arms and shoulder with PMR, which stupidly I allowed to manifest itself. So increased up to 10mg for the immediate future in the hope the inflammation will subside again....although even on 8mg the last time round I did experience painful shoulders.....nothing compares with the cruel fate of GCA if left unattended and increasing the Pred. I was expecting to feel awful having to go back up, surprisingly I don't. So far for the past two years I've managed not to catch any of the Covid viruses and really don't want to go down with the Omicron, so being extra careful when I have to go out.

Take care and good luck and yes, I turn regularly to the ladies on the forum

who are the best....better than any doctors, dare I say !!

Anne

[herdysheep in reply to Hidden]

We have some good men, too. Wouldn't want them to feel left out!

[Hidden in reply to herdysheep]

Sorry, I forget that men suffer this condition too. They seem to fair better than us ladies though and seem to be able to taper without too much trouble. I now know of six men with it and only one is suffering badly.

[diana1998 in reply to Hidden]

All the men I know who have had it have been down to zero within 2 years apart from one who's been on 5mg since 1997 for pmr!

[Cact in reply to Hidden]

So sorry you’ve had such a rough time recently, hope you’re feeling better now. When I read all the posts on here every day & so many people having such a hard time with their conditions, I feel a bit guilty that I’m having a relatively easy time coping with mine. I’ve only had one flare since I started Prednisolone in September 2020, & that was the fault of the Rheumatologist who diagnosed my PMR on 20mg & tapered me by 2.5mg every month. By March 2021 I was on 5mg with no problems, until April & on 4mg when the pains returned with a vengeance. So back up to 10mg & doing a slow taper since June.I saw another rheumy in October & she agreed the 1st taper was way too fast & agreed with me doing the slow one of .05mg every 4 weeks..I agree this forum is a lifesaver, such a wealth of information. Thanks for your reply.

[diana1998 in reply to Cact]

My Nuffield rheumy dropped me 1mg every 3 DAYS from 20mg to 13mg January 2016🤔☹️ Had my only ginormous flare in the spine on reaching 13mg. Thought I was dying. Called 999 but they just said call GP. I took 2mg extra which stabilised me thankfully. I wasn't on the forum and completely ignorant. Can't imagine how anyone could cope with that. From then on I tapered ultra slowly and have had no flares. 6 years and on 3mg. Making a concerted effort to reduce slowly in 2022. Forum a lifesaver. Happy 2022 everyone!

[HeronNS in reply to diana1998]

I remember my doctor at the time (2016) telling me she was happy with me at 3 mg. I was able to go lower and was on 2 or thereabouts for a few years. Some of us just need a little bit to keep us going. I did have a brief flirtation with zero in 2020. Then after another few months at and around 2 again I had a massive flare, which is only now subsiding, and as I indicated elsewhere in the thread it looks like 3.5 is as low as I can get these days. But it's better than the 10 I needed a few months ago! It's all relative, isn't it?

[diana1998 in reply to HeronNS]

👍👍👍

[Hidden in reply to Cact]

So happy that you are doing well, keep it up. It's great to read when people are doing so well. With time and patience we will all get there eventually !!

[Flutterbies57 in reply to Hidden]

What were your immediate symptoms of GCA?

[Hidden in reply to Flutterbies57]

Originally, three months after being diagnosed with PMR I experienced pain in jaw (jaw claudication) when trying to open my mouth wide. Top back teeth ached, and Tender head, and slight headache. However, thinking back to before PMR diagnosis I think GCA was in the background, as the headaches I was experiencing were different to the normal....they were like a whirling (circling) feeling and started at same time every morning 2am on same side of head. Had my rheumy put me on maybe 60mg to start with maybe that would have prevented GCA. Because I didn't present with tender temples he didn't think I had GCA....but then again I wasn't presenting with any of the others at that time either. Maybe the different kind of headache may have alerted him, but again maybe that was a PMR headaches, who knows !! Just an awful disease and GCA much worse in my opinion.

😪

[Flutterbies57 in reply to Hidden]

Thankyou for the answer. Do take care on your journey to recovery

[Sharitone in reply to Hidden]

Just being curious - were those the symptoms of your present GCA as well? I never had the jaw claudication or the tender scalp, so find it difficult to know which of the symptoms is GCA. does it knock you for six?

Sincerely hope your 10mg does the trick!

[Hidden in reply to Sharitone]

Strangely enough no, the symptoms I had last Sunday was tender head and tender left temple. I just don't take any chances as I only have the sight in one eye, nothing to do with GCA, that happened in 1994. So naturally I get very anxious about GCA. Running up to last Sunday I was getting painful arms and shoulders for a few weeks. But like I said I let it get out of hand and didn't increase the Pred. I was diagnosed in Dec 2019....thinking I'd be off the wretched Pred by the end of this year, making it three years, looks as though it may be a while longer now. I will continue with 10mg for a week then slowly reduce again by just 0.5mg and stay on that for a couple of weeks before dropping to 9mg.....you can see at this rate how long it will take to get off them, if ever I do. I wouldn't mind a small maintenance of Pred though like my brother in-law takes, just 1mg daily....I'd settle for that. It's everything else that comes with taking Pred. Mood Swings, weigh gain especially face, terrible nails and hair, plus possibility of diabetes and high blood pressure to name but a few. But what choice do we have. And in answer to your question, No it didn't knock me for six...I just felt under the weather, as the saying goes, just for the day last Sunday. Today I feel good

Take care

Anne

[Sharitone in reply to Hidden]

thanks. Great sympathies, but i think you're doing well with the steroid reduction!

[HeronNS in reply to Hidden]

Have just had a reminder that even half a mg can make all the difference. Once again the difference between 3 and 3.5 has manifested itself with painful shoulders at 3, and better at 3.5. Go figure. Certainly we all have a lot to contend with these days and it's important to feel as well as we can. We need some kind of life after all.

[Hidden in reply to HeronNS]

Yes, totally agree Heron. I was only dropping by 1/2 mg too, but still the pains persisted in upper arms and shoulders. Seems 10mg is good for me but really don't want to stay on 10mg too long. Not sure if the 'Dead Slow and nearly Stop' method was working for me. Maybe I need to stay on each mg for a month....going to take ages to get off this awful drug though, but what can we do. Like you've said, our lives have been interrupted for long enough, we must try and get some sort of normality back while being careful too.

Kind regards

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

As said previously, no matter what system you use be it a slow taper, or an overnight one -if you need to 10mg you need 10mg. A slow taper helps you to get from dose a. to dose b. easier by reducing steroid withdrawal symptoms, but it not a magic bullet ...

if you need dose a. you need dose a. End of.

[Hidden in reply to DorsetLady]

Yep...understand

[PMRpro Ambassador]

Never mind just waiting for a -ve test - although they were saying yesterday that there is little point doing them after about 7 days - but I would wait AT LEAST a week more and really until you feel really well before setting off on the downward journey again. You've done well - and being ill requires more corticosteroid so your body copes with healing which continues long after the infection has disappeared. To boot, you are in adrenal recovery territory. Don't push your luck.

[Cact in reply to PMRpro]

Thank you PMRpro, I won’t push my luck. In fact I’ve decided not to taper this month after all & stay on 7mg until next month, just to be on the safe side. There’s no rush & as you said I’m doing well & don’t want to do anything to jeopardise that . Can I just ask who said there’s no point doing tests after 7 days?

[PMRpro Ambassador in reply to Cact]

Can't remember - was it in a Sky News discussion about the lack of LFTs and the need for -ve tests on days 6 and 7. I remember thinking at the time I didn't quite see the logic - but they seemed to suggest by that stage it would be nearly the 10 days anyway and you might as well just wait for Day 10 as it was very unlikely by then you would be shedding virus. Don't know how much evidence there is for that ...

[Cact in reply to PMRpro]

Thanks for that PMRpro 👍

[Blearyeyed]

Agree wholeheartedly with the others. Don't taper until after you have had a few days of negative tests. You may not feel that under the weather from your Covid infection but your body is working hard enough already to fight the infection.I don't personally start a taper of any drug until 5 days after an infection has passed so that I've given enough time for my body to build up its strength and it has rebooted and rebalanced enough to then work at coping with a change in drugs ( no matter how big or small the increase or decrease in dose may be ).

Hope you get those Negative results soon , Bee

[Cact in reply to Blearyeyed]

Thank you Bee

[john140]

These are small doses of Pred with a very gentle taper to be fair. So I would continue as planned with the taper if it were myself.

[Cact in reply to john140]

Thank you for replying John.

[Cact]

UPDATE. Day 9 & still testing positive 😒. My husband tested negative today & my hopes were dashed at my result. I realise it may take me longer to recover because, besides the PMR, I also have Type2 diabetes since March 2020. Throw in the virus & that’s 3 conditions my body is very busy trying to deal with, but after studying the test line & can see it’s quite faint, I’m hopeful for a negative result soon, fingers crossed 🙏🙏

[DorsetLady PMRGCAuk volunteer in reply to Cact]

How disappointing - hoping for better news soon

[Telian in reply to Cact]

It is disappointing but you’re not in a race with hubby and sounds as if you’re on the road to recovery. Be patient and rest, you’ll get there. 🌺

[Cact in reply to Telian]

Thank you Telian, your comment made me smile 😁