First taper

[Mirrordinghy]

I was diagnosed with PMR by my GP and put on 20mg on 10 Sept 2021. This was increased to 30mg on 21 Sept as I was still in pain. Last Friday GP suggested first taper as my CRP levels had come down from 88 to 9. I decreased by 5mg to 25mg. The first two days were ok but now (Tuesday) I'm only pain free from about 12am when Prednisolone kicks in until 6pm. I'm limping again, struggle to get up from sitting ect. In the opinion of the more experienced, is this normal for tapering and should I wait it out, or not and I should go back and taper more slowly. My GP is not available until Thursday so I'm waiting it out for now.

[jinasc]

It is best to reduce no more than 10% at a time. I suggest you go back to where you were comfortable 25mg till you feel OK (it can take a few days). Then drop by 2.5mg. You cannot cut enteric coated tablets. Ask your GP for a mix, 5mg, 2.5mg and 1 mg. That helps when you are tapering.

I know that s/he will not be happy, but you can explain that the top experts recommend no more than 10% at a time.

Also go to the FAQ's and download both DSNS and DL plans. DSNS has been subjected to a short trial (by Dr Sarah Mackie) and if necessary you can PM me for a copy of the result.

[Mirrordinghy in reply to jinasc]

Thank you jinasc for your answer. Much appreciated. Do you mean going back up to 30mg for a few days and the lowering by 2 1/2 so I'm on 27 1/2 for a week or two? The slow tapers seem to l start at a much lower dose than I'm on.

[jinasc in reply to Mirrordinghy]

How I wish I could talk face to face, no matter here goes.

I misread your post and thought you were on 25mg now.

So yes you can go back up to where you were comfortable for a couple of days and start from there.

The 10% rule applies to figures above dosage of 10mg. Once on 10mg then one of the plans, many of us find works better.

Unfortunately I cannot find the Tips from Bhaskhar Dasgupta in a thread on this site. Hopefully someone will come along and know where it is. I will then copy for future use.

[Mirrordinghy in reply to jinasc]

Thank you again for your answer Jinasc. This is very clear and gives me good guideance. It should be a 10% drop. 5mg is probably too much.

[DorsetLady PMRGCAuk volunteer in reply to Mirrordinghy]

You can start a slow taper at any dose, but usually they are not required at higher doses... jinasc has explained about the "not more than 10% of current dose " above 10mg.

Any dose below 30mg, I would (and did) do 2.5mg a time, until 15mg, then amended to 1mg steps down, until 7mg, then slowed even more.

[Mirrordinghy in reply to DorsetLady]

Thank you Dorset Lady. Your input is much appreciated. That is what I thought. 2.5mg would have been better. 5mg was too big a step.I saw another GP today (about a lump in thigh - he referred for ultrasound) and he asked how taper was going. When I told him he suggested going back up to my comfort at 30mg for a month and then taper more slowly. So tomorrow I'll go back up to 30mg and try and get the other GP on board. Thank you again . This forum is invaluable.

[piglette]

The fact that you were still in pain at 30mg may point to something else of course. Hopefully your GP can sort it out.

[Mirrordinghy in reply to piglette]

Thank you Piglette. Just to clarify, I was fine (largely pain free) at 30mg. It was going down to 25mg where I feel the pain come back.

[piglette in reply to Mirrordinghy]

Ah, I read your post incorrectly. It may mean that one dose does not cover you for 24 hours, it varies from person to person. Some people find it better to split the dose so it covers them OK for 24 hours. As Dorset Lady says the drop was probably too much for you and you may be better increasing again.

[Mirrordinghy in reply to piglette]

Thank you Piglette. I think it was I who wasn't clear :). I wrote above to Dorset Lady the outcome of today.(See post) I'm going back up to 30mg. I'm not pain free on 25mg completely at any time in the day and after 6pm it is like I wasn't taking any Pred. at all. I thought of splitting but the GP didn't want me to and 30mg at breakfast enabled me to be pain free almost 24 hours....

[PMRpro Ambassador in reply to Mirrordinghy]

30mg is really rather a high dose for "just" PMR - is there anything to suggest it might have an element of GCA?

[Mirrordinghy in reply to PMRpro]

I think about it. I thought I had a little pressure in my sinues, nose and around eye (no headache or jaw ache), but when I spoke to the GP about it last week he said that it was very very rare, almost impossible with CRP of 9 to have GCA so I was reassured .Should I hve been? Oddly, now on 25mg Pred I seem to have less pressure behind the eye and sinuses.

[PMRpro Ambassador in reply to Mirrordinghy]

Well I fear he is wrong - up to 1 in 5 patients with GCA has blood markers that run in "normal range" although that doesn't mean they aren't raised for them. It isn;t that rare - and we have several on the forums with the story to tell. Snazzy's markers were still "normal" as her vision was shutting down in A&E. It is also possible for the increase to lag considerably behind, months in some cases.

[Mirrordinghy in reply to PMRpro]

I wonder what I should I do? Can I request an ultrasound? Or should I just be vigilant and go to A&E if any symptoms....

[PMRpro Ambassador in reply to Mirrordinghy]

Depends on whether the local hospital does the u/s - by no means everywhere does. But yes - A&E if anything doesn't feel right. One of the rheumies here reckons that 20mg is plenty even for GCA in most cases unless there are real visual symptoms.

[Mirrordinghy in reply to PMRpro]

Well that is reassuring. Hopefully 30mg even better. Thank you for your answers. I'll be vigilant.

[piglette in reply to Mirrordinghy]

What reason did your GP give for saying you should not split the dose? As PMRPro suggests it could be GCA. Your GP saying it was rare to have a reading of 9 with GCA should accept that actually the number of people with GCA who have normal readings statistically is one in five people, which in my opinion is not that rare.

[Mirrordinghy in reply to piglette]

Thank you Piglette. It is good to be aware. That was also my understanding after reading all I could. I guess I just have to be very vigilant and if I have doubts take myself off to A&E...maybe call 111 before .

[Nextoneplease]

Hello Mirrordinghy 😊

Reading your posts takes me back to my own diagnosis in March this year, when I was initially put on 15mg, then texted from the surgery with a message that rheumatology wanted me to taper off in two weeks (!!!), then a rheumatologist appointment when they told me, no, stay on 15 then taper slowly. In June, at 9mg by then, I developed head and jaw pain and spent many a fraught hour wondering whether this was a ‘new’ pain, or the same sort of tension headache or migraine I’d had all my life??? How is it possible to know? It can all be very uncertain and worrying 😳

To answer your questions, firstly pain in response to dose reduction ( ie ‘withdrawal pain’) usually lasts no more than about five days. Much more than that, and you should strongly suspect that the lowered dose is not enough for you at this moment. So if you are still in pain five days to a week after reduction, I’d go back up to the dose at which you were comfortable (30mg in your case).

Re the feelings of pressure in your head, it’s so difficult to interpret these accurately. However, I do feel that it’s not worth taking chances. If you feel that the pain is something new to you, report it to your GP or to the duty GP, and get their advice. When I did this, I was re-referred to rheumatology and my dose was put up to 40mg as GCA was clinically suspected.

In summary, try to relax, or tension and anxiety will in itself cause pain, especially head pain. But if you feel that the pain is new or different for you, don’t hesitate to contact GP surgery, 111 or A &E.

I hope this helps and I wish you all the very best 😊

Nextoneplease x

[Mirrordinghy in reply to Nextoneplease]

Thank you Nextoneplease. This was very helpful. I needed to know if I should wait five days or not. Did you actually have GCA? Of course I am worried about it but don't have classic symptoms like headache or jaw pain. Am seeing an ophtomologist in two weeks and hoping they can also reassure me or not.

[Nextoneplease]

Good morning Mirrordinghy 😊

Sorry I’ve been delayed in replying to you. You asked about my GCA. This is a slightly moot point as I after I reported face and jaw tenderness to the GP, also sight loss (inability to read menu in restaurant, difficulty in reading even a children’s book to my grandson, generalised blurring of vision), I was put on 40mg of prednisolone. When I got to the rheumatology GCA clinic, I had been on this dose for 2-3 weeks and my vision was somewhat improved. They did an ultrasound which didn’t show up as positive for GCA, but on the basis of my history they said, yes it was GCA but that the steroids had rapidly cleared it up. So I guess that’s a good result so far….🤷‍♀️

As with so many things PMR/GCA related, a lot of this is a matter of judgement. Really if you are concerned about your symptoms I’d advise you to discuss with your GP. Few things are more precious than your sight, and no one could blame you for being cautious.

Take care and let us know how you are 😊

Nextoneplease x

[Mirrordinghy]

Thank you Nextoneplease. I will.