flare up

[Glyngin]

after 4 years up & down on prednisone I tapered slowly to 4mg in November.Then got Covid pmr flare up ++.Rhemy increased to 7mg but no effect.Can’t get hold of him until next week Am really tempted to go to 10mg but dread the tapering of 1mg a month again.This seems endless.Any advice would be greatly appreciated.

[SnazzyD]

oh dear, it’s can be so disappointing with these long haul things to have a set back. Where in the Covid journey are you? Is it sufficiently long after the first symptoms to know it isn’t the muscle pains you can get with it? I know from experience they can be very bad even without any PMR and Pred likely wouldn’t help.

[Glyngin in reply to SnazzyD]

Had Covid on 21st December now negative.The pains are definitely pmr(pelvic & shoulders) Do you think increasing to 10mg would be ok or wait for rheumy advice?

[SnazzyD in reply to Glyngin]

It’s a difficult time of year to get help, even though it shouldn’t be. Your Rheumy has already given you their blessing to go to 7mg, so my guess is that 10mg until next week when you can get their advice, wouldn’t break the bank unless you have other medical reasons not to do so. As you know people tend to find that creeping up isn’t as effective as going up. If you have a flare, you have a flare and you have to treat it accordingly.

It is sad to feel like you’re back to reducing 1mg per month but needs must I’m afraid. Given that you have flares and Covid hangs about, a 0.5mg drop might be better until you know you really are on the mend.

[Glyngin in reply to SnazzyD]

many thanks 10mg will hopefully do it🤞I’m sure he will say the same.

Happy & Healthy 2024 for us all

[PMRpro Ambassador]

If you don't get a flare under control you run the risk of needing even more pred in the long run. Your history of yo-yoing won't have helped either,

The rheumy already upped the dose to 7mg - you could go to 10 or even 12 for a week and drop back to 7mg if it doesn't help without any tapering. That is the flare protocol - use a higher dose to clear things out and go back to where you were. 4mg is obviously unlikely to be enough anyway.

[remission]

sorry that you’re going through this, I know that battle only too well.

I would go to ten to clear up your symptoms, there is no point in living in pain to fight this;I have also tried the tough guy system and it doesn’t work. I, however, then once the pain and inflammation is gone, I would drop back down to 7 and continue to taper. I’ve been off prednisone for, gee, can’t remember now, must be four or five years. The best advice I can offer, is when you do get down to 1 mg and you feel some discomfort, that’s when you can stay the course, don’t increase, instead the following month reduce it by a quarter, and then half that the following, guaranteed your body will send you msgs it’s wants more, but that is how I managed to be free of prednsione. Hope you feel better soon. Sue

[Glyngin in reply to remission]

Many many thanks for that advice.Took 10mg yesterday & today no effects so far 🤞crossed.

[remission in reply to Glyngin]

Yes, an increase of 3 mg usually does the trick, I was in prednisone for about 2 1/2 years, tried year one to get off with no luck at all. I found starting mediation also helped me deal with flare ups in a better way. Good luck

[DianaAdshead]

Hi Glynn,

There is some amazing help on this platform, mine won’t be of much use, but to give you some comfort that my Mum has been on prednisone for over 5 years now and had to increase her intake regularly in the effort to reduce below 4mg. She has never fully got off the steroid, but she read her signs as they rose and increased the dose to combat the pain and then reduced very slowly each time.

I wish she had better care where we are she would have greatly improved had she had regular check ups. Please get regular check ups and medical advice I wish you all the best

Good luck I hope it helps a bit

B

[Glyngin in reply to DianaAdshead]

Thankyou so much Diana that’s really comforting to know.I thought after 4 years I should be off prednisone (as other friends with pmr are) Once I get through this flare up I will taper slowly & not rush to get to 5mg or below.My rheumatologist did think that 5mg might be my permanent dose.As long as I can be pain free & function I don’t care.Happy & HEALTHY new year to all & thanks for all the advice.xx

[DorsetLady PMRGCAuk volunteer in reply to Glyngin]

Yes but as we are always saying - it’s YOUR PMR, not your friends, not anyone else’s on here, not what the doctors think it should be - it's yours! End of! 😊

[Gossiplady in reply to DorsetLady]

Oh! So much sense! Bless you.

[BigStory]

Uuggh! I was down to 7.5 mg, then got low-grade Covid. That bumped me to 12.5. Then I got run down and Covid went full blown _ thought I had GCA, with temple pain, throat pain, severe brain fog. The doctor at the walk-in clinic bumped me to 50mg and then a quick taper to 35 mg.

I don't know what the interaction is between PMR and Covid, but it was very real. I couldn't get below 30 until I started getting over Covid, which took lots of serious rest. I think perhaps prednisone suppresses immune system function which allows Covid to linger. And the increased prednisone resulted in more water retention, and hand and ankle pain were part of the equation for the first time. (Sometimes I think that this will "burn out" when it has worked its way through every joint I have - it keeps moving around.)

I have been able to reduce prednisone relatively quickly (about 3mg/week) but only as Covid symptoms have decreased - I am now down to 18 mg. In any case, deeply discouraging at times. FWIW, hang in there.

[Hopeful424]

So sorry this has happened to you. I agree with the others. You need to get this flare under control as soon as possible. I also would go back up to control the pain and the flare. I hope you can regain control and begin to taper soon.

[par600]

just another story. I was reducing from 6.5 to 6 when my adrenal insufficiency knocked me out. Upped to 11mg. No help Rhrumy told me to stay there snd make appt with endocrinologist (6weeks away). Could not live like that. Went to my GP who diagnosed PMR. He said go to 20 mg for a few days and then cut down. Now at 8.5mg

He also said that staying on any dosage below 10mg is acceptable - even for life. Will not die from prednisone side effects Good luck on your journey