Flare again

[Blackcatlover]

Well I wrote about a possible flare

two weeks ago and received good advice to add 5 mg of Prednisone for five to ten days. I started to feel better after a few days so after four days I went back to the dose before the flare which is 4 mg. Little by little I started to feel really awful. Pain in shoulders, neck and arms. Today I added an extra 5mg and I plan on continuing that for at least a week. If anyone has more information for me, I promise to listen this time. Feeling better already tonight.

[SheffieldJane]

Maybe when you return , it should be to 5 or 6 mgs. It doesn’t sound like 4 mgs is doing the trick. The inflammation seems to start building again quite quickly.

[Blackcatlover in reply to SheffieldJane]

Thanks Sheffield Jane, I agree. After ten days I’ll go to 5mg. I did well at 4 mg until I tapered to3.5. Looks like 4mg was the tipping point. Thanks for your always great advice.

[SheffieldJane in reply to Blackcatlover]

Good luck!

[HeronNS]

I have never had the courage to drop back all the way, even to just above the last good dose. I always step down over a few days - not a real taper, just a slow drop down. I think it depends how sensitive you are to changes in dosage and how likely you may be to experience pred withdrawal pain if you're too fast for your particular body. Good Luck!

[Blackcatlover in reply to HeronNS]

Thanks. I’ve always had trouble tapering. I think I’ve got it when it bits me in the ass. I think I’ll stay at 5mg if my PMR allows.

[Grammy80 in reply to Blackcatlover]

No expert here but I also am a troubled-taperer...hopefully 5 mg will work well.💖

[DorsetLady PMRGCAuk volunteer]

As others have said, back down to 5mg - as I’m assuming you’re on 9mg at the moment - you could try it in 2 stages - stopping at 7mg for a week. Then stay at 5mg for a month before tapering again with your DSNS regime.

[Blackcatlover in reply to DorsetLady]

Thank you DorsetLady. That sounds like a great idea. Tapering has never been easy for me.

[DorsetLady PMRGCAuk volunteer in reply to Blackcatlover]

Well just take it as slowly as you need to....lower dose are always more difficult than people think....and that includes doctors.

I’ve said many times, it took almost the same time for me to get from 10mg to zero as it did to get from 80mg to 10mg.

[Jackie_boy in reply to DorsetLady]

I’m in a similar position, got to 6mg and the pain started to be persistent, although not in all the same places as it was originally so I’ve been slow to see it as a flat because I’ve been doing some fairly full on exercise. My question is, if I follow the advice I see in various replies and go up by 5 mg , how long to stay at this raised dose and then how is it best to go down again. I’d be on 11mg if I add the 5. I was fine at 7 and 8 mg, could I go up to one of those doses? When going down again do I go straight back to 6 or take it more slowly. Advice would be much appreciated, thank you.

[DorsetLady PMRGCAuk volunteer in reply to Jackie_boy]

Usual recommendation is 5-10 days depends on how much built up inflammation there is to get a grip of. Then go back down to just above where the flare started - so probably better 8 than 7. As for exercise, just moderate it a little - build up slowly...,,,and gradually.

[Blackcatlover in reply to Jackie_boy]

Listen to DorsetLady who answered me on this post. I was at 4mg and tried to drop and flared. Added 5 and that has me at 9mg now. I didn’t listen and thought I would be fine after four days-wrong. It’s back worse than ever. I’ll stay at nine for ten days and then drop to seven for a week and see how I feel. I’ll make a plan for tapering again if all goes well. Good luck.

[PMRpro Ambassador]

There are two reasons for flaring at a given dose - either you reduced to a dose lower than a stable disease activity needed OR the disease activity has increased and the stable dose is no longer enough. You have to work that out - but you also have to give the higher dose enough time to empty the bucket of inflammation, otherwise you are still too close to overflowing.

[Blackcatlover in reply to PMRpro]

Thanks PMRpro. That’s always the big question. I spent two years having trouble getting below 15mg. Whenever I tried to reduce I would flare at 12.5mg-back up to 20mg. Fifteen seemed to be the dose I needed. It wasn’t until Actemra that I finally got below 10mg. After that during the next two and a half years it’s been a dance to get to 4 mg. Many flares but I upset the apple cart by trying to go to 3.5. Just hope I can get back to 4 at some point. My rheumatologist said he’s never seen a patient with PMR have so many flares trying to reduce. He has basically given up and lets me do my own thing. Can’t find another doctor who has knowledge of PMR.

[PMRpro Ambassador in reply to Blackcatlover]

He must have led a sheltered life!!!! Did you try straight to 12.5 from 15?

[Blackcatlover in reply to PMRpro]

That’s what he wanted me to do the first time and second time but of course I failed. After that I would reduce by .5mg and as soon as I neared 12.5 I would flare. I reduced a half a mg each month.

[PMRpro Ambassador in reply to Blackcatlover]

It does sound as if you are one of the people who appear to absorb a lot less of their oral pred dose than others - there are several of us on here who struggle to get the dose down at all, both needing tiny reductions and not being able to get to a low dose. There are even doctors starting to agree that some of us only absorb half of it - and that makes a big difference.

[Blackcatlover in reply to PMRpro]

Just a thought. I don’t store my Prednisone in the bathroom because of moisture, but I just looked at the date on my 5mg tablets of prednisone and the date is two years ago. Might these not be strong enough? I’ve switched them out and I put in five 1mg tablets that are recent.

[PMRpro Ambassador in reply to Blackcatlover]

If they are out of date you don't really know what you are getting - although theoretically solid tablets stored appropriately keep for years, the average pharmacist would have a fit!!! I assume you mean the use-by date rather than date of manufacture?

[Rugger]

When my PMR has flared, over the 5 years I've had it, my Rheumatologist has advised I stay at an increased dose of pred for weeks or even months before starting to reduce again.

With the help of TCZ, I reduced to 1mg in November (I now also have GCA-LVV) but symptoms returned, so she is keeping me on 5mg for at least 4 months until she sees me in March.

At these low doses, I feel it's better to be slow but sure.

[Blackcatlover in reply to Rugger]

Thanks Rugger. Just hope I can get back to 5mg and be comfortable. I’d be happy to stay there for a long time. Good luck with your journey.

[Crackers1964 in reply to Blackcatlover]

Also, useful to be on even a small dose as in my experience when I had Covid lt yer, my rheumatologist suggested (I thought too) that it made the virus less severe. So, I’m on 4 mg daily until covid calmed down.

[Blackcatlover in reply to Crackers1964]

Great info. Thanks. I will be happy to stay at 5mg if I can get there.

[Crackers1964]

Exactly, seems a small price to pay to keep well at present! Best of luck