How do I drop pred after a flare?

[judyb100]

I'm not sure what to do next. I had a flare after tapering to 7.5 mg. Then I raised my amount of pred slowly. This didn't help much, so I asked for advice from you guys (U.S.) or you lot (U.K). I took your advice and raised my pred to 12.5 and kept it at 12.5 to get through two cataract eye surgeries. I feel pretty good at 12.5.

The second eye surgery is tomorrow. Assuming all goes well, how do I start tapering again? Should I start DSNSing at .5 mg or could I drop down more than that? It's been 5 weeks since I was at 7.5.

Thanks!!!!! for any advice.

[Hidden]

Good Morning from the UK 🇬🇧

Certainly don’t drop until you’ve recovered from your surgery, have you made them aware you’re on Prednisolone?

When you’re ready to start reducing definitely go slowly using one of the tried & tested dead slow reduction plans.

The general thinking is to reduce by no more than 10% so you could try 1mg from 12.5to11.5to10.5 but from then on only by 0.5mg BUT as you’ve had a Flare & Surgery maybe just by 0.5mg only.

Think Tortoise & The Hare!

As PMRPro says, it’s not a race to Zero but to find the lowest dose that will hold your symptoms at bay.

Good Luck with your Surgery 🍀

Get Well Soon

Mrs N 💅🏼

[judyb100 in reply to Hidden]

Thanks for your advice. I admit I was hoping for a race to zero and I foolishly went along with my doctor's plan to reduce quickly from 9.0 to 6.0. I was feeling a lot better at the time and I thought maybe, just maybe, I could be the hare and do this quick tapering. Of course that led me all the way to a lot of joint stiffness and 12.5 mg of pred!

[Hidden in reply to judyb100]

Hi Judy

There are a couple of methods of tapering down, PMRpro & Dorset Lady will probably send you a link.

As PMRpro says you got down to 7.5mg before you experienced any difficulties, so you could try 12.5mg ->11mg; 11mg ->10mg

See how you are at 10mg then decide if you want to try 10mg->9mg; 9mg ->8mg then sit there a while as it’s just above where you had issues last time.

Be mindful of any changes ie stiffness etc & you can always go back to the previous dose.

GP’s always want a quick taper & constantly want you to reduce but it doesn’t always work & you’re the one to suffer.

Take Care & just ask anytime for advice or anything you’d like to know.

Mrs N x

[judyb100 in reply to Hidden]

Thank you Mrs. Nails! Your advice really makes sense. I'd be very happy to get back to 8 mg if I can (or even 8.5). But this time I won't force it using my doctor's strict schedule, as I did last time. I've learned so much from this forum on flares and how to deal with them. Maybe next time I'll do a lot better than I have in the past.

[Hidden in reply to judyb100]

I hope so 🌺

[PMRpro Ambassador in reply to judyb100]

We do spend a lot of time on the forums explaining why the tortoise won the race! And everyone thinks they will be the exception...

[judyb100 in reply to PMRpro]

I'll try to remember the tortoise from now on. I think I've learned the hard way. My rheumy always wants to rush me off pred as fast as possible. Of course I'd like to get off it too, but I've had enough experience now to see that you're so right about the tortoise approach!

[PMRpro Ambassador in reply to judyb100]

We ALL want to get off...

[SheffieldJane]

Honestly I would wait until your surgery is over and the recovery period. Prednisalone/ Prednisone is a good support for physical trauma. Then when you are feeling strong, do the tiny gradual reductions that you mention, always pausing to see that everything has settled before reducing again. Wishing you a great recovery! Jane 🇬🇧

[judyb100 in reply to SheffieldJane]

Thanks! I'll wait til my recovery is over and will reduce much more carefully in the future. I got carried away because I was feeling unusually good at 9.0 and then 8.5. Also my doctor was after me to reduce quickly. When I got to 8.0 and then 7.5, the old PMR stiffness came back again and I had to admit the disease had not gone away. I had had at least a little hope that I was over it. I don't know what I'd do without this forum and its wonderful people!

[PMRpro Ambassador]

I'd say you could certainly go faster than 1/2mg at a time - 1mg would be OK and if it were me I think I might try a drop to 10mg using DSNS to start. It is still well above the level you flared at and the DSNS approach means you only ever challenge your body with the new dose 1 day at a time. If it feels too bad after a couple of goes you could retreat respectfully.

But whatever you do - wait until you are fully recovered from the cataract surgery. And don't go all the way back to 7.5mg - stop short of that!

[judyb100 in reply to PMRpro]

Thanks so much for your advice. There's a very quick recovery after the surgery, but I think I'll stay at 12.5 for a week and try dropping from 12.5 to 10 using DSNS to start. Just to make sure I understand, does this mean that I'm dropping by 2.5--some days of the week I'd be taking 12.5 and other days 10.0? Or do I drop right down to 10 and DSNS my way down to 9.5?

Thanks again. Next time this happens I'll have a better idea what to do. This is what happens when I do what my doctor says. He gave me a plan to taper down to 6.0 quickly and it just didn't work!

[PMRpro Ambassador in reply to judyb100]

Yes, what I was suggesting was to do DSNS but with a 2.5mg drop to get you to 10mg quickly - one day 10mg, 5 days 12.5mg, one day 10mg, 4 days 12.5mg, one day 10mg, 3 days 12,5mg and so on - provided that first day of 10mg doesn't feel too bad. If it feels too bad, then do it with a smaller drop, whatever is easy with your tablets. But from 10mg - DSNS and maybe just 1/2mg at a time.

Quickly down to 6mg works if your end dose is going to be 5mg or less - but since no-one provides us with a crystal ball to know that it can be risky!

[judyb100 in reply to PMRpro]

Thanks. That's just what I'll do. Until the flare, I had felt pretty good at 10 or 9 or even 8.5. Below that, I haven't had so much luck.

[GCA1947]

Dear judyb100,

Those with more savvy than I have recommended already what you should try.

I'm coming down from my second flare that I didn't know I was having because of my been on Paracetamol pain relief for over two years for a fractured spine bone and the eight capsules a day were hiding the pain from the flare. When I got down to 4 capsules the pain from the flare was revealed so now I'm back at six capsules, and I feel much better. I'm still at 7.5 mg Prednisolone which I'm reducing very slowly.

I do hope you feel better soon what ever you decide

Regards

Colin

[judyb100 in reply to GCA1947]

Dear Colin,

I'm very sorry to hear about your fractured spine bone. It must be so hard to deal with a fractured bone plus PMR, although it sounds like you're feeling better now.

Without these wonderful people on this forum, I don't know what we'd do! I've been sort of dense, but now I think I finally know what to do about flares thanks to all the good advice I've gotten.

Best wishes in dealing with your back plus PMR.

Judy

[GCA1947]

Dear Judy

I usually start my posts with "I've only got G.C.A. but left it off in my reply to you so I don't have P.M.R. I do have Osteoporosis Phase 2 though. I've had that for what seems like decades I'm not really that old (70), but I certainly had it when I was fourteen because two of my backbone discs fused giving me a permanent spine curve and my scout troop dropped me on it when I was being bumped. The Klinefelters Syndrome was diagnosed in 1996 when I was 46 and I had Osteoporosis then because I'd had seven rib fractures and a metatarsal break in my left foot before diagnosis. Testosterone Replacement Therapy started in 1996 and the O. went away in 2003. A G.P. who should have known better kept me on 15 mg Prednisolone and it came back and I've still got it.

I'm not a normal G.C.A. patient but I do so agree with you this forum is a life saver and I am so pleased that I found it.

Regards

Colin