Back to the prednisolone drawing board!

[DevonMichael]

Well, I thought I had made it. Counting off the weeks since November 2020 I was heading for a year of zero prednisolone but it was not to be. The past 6-8 weeks have been awful with muscle pain and mobility issues and I have had to seek out medical advice.

ESR of 35 and CRP of 34 confirm inflammation issues and my GP wants me to try a 5mg starter to see if that will work. (This is a departure from the 15mg starters on my last two PMR tapering plans).

Because I have just had the covid booster and he wants the immune system to do its stuff. The 5mg trial is delayed until next week.

This will be my fourth tapering plan. I will let you know if it does the trick, I need something to get back to pain free movement and some sort of life!

[allykat]

Really gutted for you. I am in somewhat the same boat. Had to go back on 10 mg in Jan 2021. Now about to start a very slow reduction from 6 mg to 5 mg. Take care and fingers crossed!

[AntBrad]

Sorry to hear that. Let's hope it is a short time on the pred.

[HeronNS]

I can empathise. But I only managed a few weeks off pred, despite taking a whole year to taper from 2 to zero! I was okay at a low dose for a few months, and then it was like PMR starting all over again. I even took 10 a couple of times, first time since 2015, and in retrospect I think I expected to handle the situation like a regular flare. It was not, and I should have begun the slow taper protocol much sooner. I'm now at 5 and hope that taper will continue successfully this time. For months every time I tried to go to 4 or 4.5 the pain came back, but I was persisting in rapid taper. Not this time, so hope it works. This spiel is supposed to encourage you remember those early days when we learned patience, and apply it again. Good luck!🍀

[DorsetLady PMRGCAuk volunteer]

Sorry to hear that…hopefully this time it will be sorted…. and that 5mg is enough.

[SheffieldJane]

Really sorry about your set back, I really hope that you are back on course soon.

[Bcol]

Morning DM, so sorry to hear of your setback, it must be dispiriting. Hope 5mg will be enough and that things are able to get back on track soon.

[Gladrags]

Hi, I’m beginning to think this PMR is similar to Shingles once you have had Chickenpox! It rears it’s ugly head every now and again! Hopefully you can get some relief soon. I’m finally off Pred but do have very stiff knees and hands every morning which does wear off as I move around. I’m just hoping it doesn’t get any worse! Good luck with your tapering.

[Viv54]

So sorry tohear this, lets hope you can nip it in the bud !

[PMRpro Ambassador]

You can use any tapering plan you like - if the underlying autoimmune disorder that gives rise ot the inflammation is active you won't a) get to lower than the dose you need to manage it and b) if the a/i bit becomes active again after getting off pred, you are in a new episode and all bets are off. Being off for 10 months as you have does suggest that your PMR went into remission for a time but something has woken it up. If the a/i bit is at a very low level of activity it often takes up to 5 or 6 months for symptoms to appear but when it is longer it is unlikely to be the last lot still there.

Everyone I know who has had PMR twice says the two episodes were totally different in almost every respect - sometimes even symptoms vary! What really is different though is that you can avoid the mistakes made first time round!!

[York54]

So sorry to hear this DevonMichael. I’m now on one and half mg of pred and going very slowly. I have just recently had shingles but still managed to stay on 2mg. No PMR pain as such but I also suffer with ulcerative colitis, that has been in remission for years , no doubt pred helping that too, now I’m starting to get symptoms of that rearing it’s head . AI illnesses are a pain !

[Jackoh]

What a disappointment for you. Hope this 5 mg will be enough for you. Take it slow and steady. Xx

[PuttyPenguin]

So sorry DevonMichael to hear it's not gone to plan. These diseases are so frustrating.