6 years to zero prednisolone

[stratplayer]

I have had 3 months pred free which felt fantastic totally free of pain. 6 weeks ago after 5th covid-19 vaccine and flue jab together I felt the bi-lateral shoulder and hip pain returning. I waited for my system to deal with it I didn't want to go on pred again but the pain was too much. 2 weeks ago I started on 5mg of prednisolone and kept increasing the dose until now on 15mg per day and pain free. my question is Should I stay a week on 15 and drop to zero has any one experienced this.

[DorsetLady PMRGCAuk volunteer]

Sorry to hear this -but the idea of going straight to zero might be a tad optimistic. Sorry 😞

I would say that as you had 3months pain free-your PMR was probably lingering…waiting to see if something ramped it up again -and that’s what the vaccines did -bad luck.

Maybe drop down to 2 or 2.5mg -you might find that is more than ample to keep things under control - then depending on how you feel taper off again.

You may be able to do that quite quickly -but you won’t know until you try…

[PMRpro Ambassador]

I wouldn't drop to zero from 15 - that means you are assuming that this isn't something that does actually happen a lot. 1mg, even 1/2mg can be enough to keep the inflammation created by a very low level of disease activity at bay. Then when you think you will be fine at zero, it slowly builds up to a level that causes symptoms. That may be the case and the jabs were coincidental - no way to be sure.

I would do the same sort of taper I had right at the start of pred - the rheumy didn't think it was PMR but I had a long business trip to the USA and the pred was to get me through it. I did 2 weeks each of 15/10/6 and stop but wouldn't stop after 5mg, I'd go to 2.5mg first and see if that is still enough or whether this is a proper reawakening.

[Randolph1]

Based on my experience I certainly don’t think you can return to a low dose so quickly I’d reduce by 3mg every 2 weeks until you get to 6, the 1mg down every 2 weeks. Good luck!

[Chickswim]

How infuriating for you. I suffer from autoimmune hepatitis (having had giant cell arteritis and polymyalger). My prednisolone comes down and then goes up according to my condition. However, I was doing really well until I caught Covid. I had it very mildly but my liver readings went sky high. You can come down fairly quickly to 10mg but after that you have to take it much slower because of the problem with the adrenalin glands. The pred stops them working and they have to be brought slowly into action again or you could be very ill. Good luck.

[PMRpro Ambassador in reply to Chickswim]

You don't need to go slowly if you were only at a higher dose for less than 2 weeks/

[Chickswim in reply to PMRpro]

Yes very true. Sorry I must have missed that bit.

[PoolePerson]

what bad luck. I don’t really have experience of this but think dropping from 15mg to zero would be far too drastic! I got down from 10mg to 1mg in 7 months but flare up took me to 10mg again. I then took nearly two years to drop and stop reducing at SNAIL pace and thankfully that worked!

[PMRpro Ambassador in reply to PoolePerson]

You have to take the context of the dropping from 15mg to a much lower dose - and here a much faster reduction in dose is what is called for as it is very likely well under 5mg will be plenty once the accumulated inflammation is cleared out.

[ChoralG]

Certainly don’t stop the prednisolone suddenly. It’s really best to taper off by 1 mg a month to allow your body to adjust slowly. So sorry the PMR was aggravated by a Covid jab. Mine was caused initially by a flu jab and reactivated by my latest Covid jab. However, I was lucky this time in that the recurrence subsided within about ten days without increasing the steroids.

Good luck anyway!

[PMRpro Ambassador in reply to ChoralG]

You have to take the context of the dropping from 15mg to a much lower dose - and here a much faster reduction in dose is what is called for as it is very likely well under 5mg will be plenty once the accumulated inflammation is cleared out.

[DorsetLady PMRGCAuk volunteer]

see reply above from PMRpro- healthunlocked.com/pmrgcauk...

[Africschoice]

6 years to 0 and back up to 15 does this never end ? 😕In 10 months I've been up to 40 down as low as 7 now back up at 14 !

It's like bingo calling, flu jab 14, Xmas 7 (if I don't get an infection, could get down as far as 3 by May.

Hope all goes well and stay safe 🌟

[PMRpro Ambassador in reply to Africschoice]

I'd venture to suggest you are reducing too fast and not looking out for having arrived at your destination: the lowest dose that works as well as the starting dose did.

Even if you are only 1mg below the dose you need, the inflammation will start to build up until it gets to the level you can feel and you have symptoms. As you reduce you need to remain at the new dose for at least 3 or 4 weeks to be sure you are still on enough. And if there are any niggling symptoms it is a sign you need to go slower. And the lower, the slower.

[dahlia68]

After a year of polymyalgia, I am now hopefully on the road to low dosage. However, my doctor has advised a very gradual reduction in Pred. and I am now on 8mg daily, having begun on 25mg. Apart from one or two days when I was uncomfortable (but without the pain I had previously suffered), this has been a trouble-free period of reduction, but I am taking the dose down (on medical advice) at 1mg per month. Do seek advice on this from a professional, as it would be so disappointing to have to begin all over again. I wish you the very best.

[sherib1]

I have had PMR for many years and been on Prednisone all of this time. My Rheumatologist has been backing me down for months at the rate of 3 mgs. per month. I have one month to go until I will be off completely. He keeps telling me that PMR will always be there and stopping the Prednisone abruptly will cause it to start up again in a big way. I tried to stop on my own several years ago by backing down 5 mgs. per week. It didn't work well. I then had to increase it to a high dose. When I have had surgery the dose is given through an I.V. at 100 mgs. It does wear off within two or three days. Please don't suddenly stop taking it.

[Hobbler2021]

Me personally would drop to 10mg then to 5mg over a couple of wks. I would taper the dose then from 5 to 3mg and see how your pain is.

[stratplayer]

Thankyou for your helpful replies, yes I think I was being too ambitious. Initially I intend to stay at 15mg for another week and if still pain free I may try 10 for a week then 5 to try to avoid the dreaded fatigue which for me came between 7 and 5mg and took a year. will post on progress ( slow progress is still progress)

[ab58sf]

I agree, the vaccine probably did the damage. It triggered the disease in me I and my doctor feel.

[carolBF in reply to ab58sf]

Sorry stratplayer to here you have had a flare. I have not had my last covid or flu jab as my body feels able to cope with the pain I am in from PMR. I have read so much about them causing a flareup.

[PMRpro Ambassador in reply to carolBF]

Remember you only hear from the people who do flare - but believe me, having Covid or the flu is not only likely to cause a worse flare up, they pose a lot of risk for older people whose vaccination is lapsed.

[Boss302Fan]

Ugh, I have no clue. I was on Pred 3.5 yrs and just past 3 month anniversary being at zero and no symptoms. I have had the Flu HD Quadrivalent vaccine on 10/17 but have to wait until end of December to get my 5th Covid-19 booster as caught Covid-19 early September.

If I got PMR symptoms again I’d try 15 mg Pred and see if the pain went away in a few hours, or days. If pain free within 24 hrs I’d probably try 10 mg the next day. If still pain free a day after I’d go to 5 mg. If pain at any time, go back up where was pain free for a day or two, and try again at half the previous dose. I have a very analytical mind so would be attempting to figuring out what the disease is doing. That is, is the activity temporary as a result of stimulating the immune system, or is it a trigger for full out PMR again? If full out, well, back to DL’s Simple Taper protocol.