bad flare. How to reduce again?

[CathyMeg]

Have GCA/PMR since 2020. Got down to 5 mgs but this last year huge stress moving house and city plus other stresses. Got terrible head pains back. Went on 25mgs for three days. Started dropping to 18 for three days and crashed again. Back to 25 last two days. Trying to get new doctors but ended up in ED. Bloods OK but but both ESR And CRP slightly elevated and iron all very low. Hearing constant fizzing in head but not like head exploding now. Just thick feeling.

how long on 25 and praying it won’t take three years to get back down 😢🙏

[PMRpro Ambassador]

If it is a flare of GCA then you need the 25mg for longer than 3 days. Don't look at "How long will it take for me to get down again - look at it as, it is protecting my vision and possibly even my life.

I don't know how your system works but the ED here would get advice from a rheumy. When I had a query about possible GCA they apologised to me that the only rheumy was doing a clinic in another town and I should return to see him the next day.

But if you do try to reduce - don't do such an enormous step next time. 2.5mg is more than enough to try.

[Grammy80]

I've been on Actemra and Prednisone since 2019 and just got to 1mg along with my Actemra.

Life happened and I was tossed off my med schedule + stress + and had a royal flare. I was given IV steroids for three days and since my discharge have been taking 60 mg per day per my rheumatologist. Is there no rheumy available? I hope you can get a professional opinion.

I'll be finding out tomorrow if I can start a taper again. Honestly, I won't mind tapering again as long as I keep my sight. My head felt so 'clean' on 1 mg....but I just tell people, I'm jacked up again on prednisone for now so I shake a lot. My head feels sort of full of sludge....but don't invite dangerous results. I hope you can get into a specialist.💞

[CathyMeg in reply to Grammy80]

Oh dear Grammy80. That is so awful. Puts my woes into perspective. Yes hope to get in to a rheumy soon but had a very bad experience with my first one. Then went to a neurologist who was very helpful and in last two years been managed by my well informed GP whose husband had been through similar problems. Have moved to new city and am lining up for appointments with a new rheumy. Fingers crossed - for me and for you ❤️

[Grammy80 in reply to CathyMeg]

In retrospect, I would give my first rheumy a '4' on a scale of 1-10. The fellow I have now is a 12!! No doubt some tough sledding but suppose we didn't have prednisone or TCZ? Then we would really be in a mess. I wish you the very best with the new rheumy for sure. It seems I've always lived within traveling distance of city teaching hospitals; Boston and Chicago. It was just always the way my folks thought...?Got a problem, get a specialist (even if sometimes we have to get the second specialist!)

Now I see rheumy, neuro-ophthalmologist, ophthalmologist and neurologist. Really, even if I had to take some pred forever or an injection; I wouldn't mind. Right now, in spite of everything, I feel good and intend to storm the Senior Center in January.

Today he dropped me down to 20mg a day from the 60 of the last two weeks. He will check me again next week. 💞

[CathyMeg in reply to Grammy80]

Wow that’s an impressive drop but what is even more impressive is your positive attitude. You give me hope and inspiration. Will search for a good rheumy and try to keep positive. 😀🙏

[DorsetLady PMRGCAuk volunteer in reply to CathyMeg]

Wow that’s an impressive drop

But that’s not the normal tapering plan -only actioned in rare circumstances, or following a flare (as in grammy80 case).

Following my sight loss pre diagnosis on 80mg for 2 weeks, then 8 weeks on 60mg before a more sedate taper

.

[CathyMeg in reply to DorsetLady]

Yep. Understand. 👍

[DorsetLady PMRGCAuk volunteer]

As stated by PMRpro 3 days at higher dose when flaring is really no good to man or beast…. You need at least 7 very often nearer 14…then once you have symptoms controlled you can drop down relatively quickly.

This link contains usual advice for a flare -

healthunlocked.com/pmrgcauk...

But from all that’s gone on recently sounds as if 5mg was much too low - so maybe drop back down to a higher dose than that…..but you do need to get current situation under control before that can be considered.

[CathyMeg in reply to DorsetLady]

Thank you for this. I tried finding previous posts about flares but couldn’t So thank you for the link and advice. 🙏🙏

[DorsetLady PMRGCAuk volunteer in reply to CathyMeg]

Good luck

[PMRpro Ambassador in reply to CathyMeg]

Always have a look in the FAQs for advice, much more likely to find something relevant than looking for past posts using HU's search engine!

[CathyMeg in reply to PMRpro]

Thank you. Have just found them for the first time. Great store of info. 😀🙏

[sidra1968]

Took a full week (maybe 9 days really) for my last flare to really subside with a higher dose..then I dropped back down