On Pred since January 2020 very slow taper since 10mg (1/2 mg each 8 weeks). Got to 3.5mg (with a little difficulty at about 6mg). Was ready to reduce to 3mg in April but see below.
ESR - 10.2.23 - 2
SCR - 10/2/23 - 2
ESR - 12.4.23 - 25
SCR - 12.4.23 - 13
X-ray 23/4/23 showed all fingers and wrists with OA. very painful and swollen fingers.
GP prescribed Ibuprofen Gel and increase Pred from 3.5mg to 4.5 mg. More ESR tests.
No positive changes, possibly worse. CoCodomol helps but not Paracetamol. (Danger noted!)
ESR - 19.5.23 - awaiting result and will contact GP when I get it.
Today: flare (which started in mid-Feb or before) seems much more severe, for example, shoulders are as painful and stiff as before I started on Pred over three years ago.
Feeling rotten (as you do!). Would appreciate advice.
What should be my starting negotiating position when I see GP - 7.5mg, perhaps for 3 months, perhaps?
Thank you.
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ChinaWuntoo
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This link contains advice for dealing with a flare - and usual advice is to add 5mg to dose you last felt okay…and you don’t need to stay at that dose for 3months -as you can see from attached-
I wasn't sure it was a flare until I got the April blood test result. It felt like it but my impressions from posts on the Forum is that it often is not clear-cut - for example, could be adrenals, especially at my present levels. When the GP put me up by 1mg I was prepared to give it a try. It now seems to me that this was not enough. Hence I want to go to the GP with a firm suggestion.
It also could be that I sometimes am "too active for (your) medication to control the illness". As everybody here knows, it is difficult to control activity, to 'pace oneself'. For example, when my son visits for a week from the North of England I get him to do the jobs that have accrued - which need some input from me - thus I overdid things.
In the middle of all this, a friend died and a can of worms was opened unexpectedly giving rise to stress.
The link suggests that I go to 9.5mg for 3 weeks (GP will understand that period I think), then back to 4.5mg for a short period and then start the taper from there. I think that's right although it sounds drastic. I must print off the link, read it carefully and take it to the GP.
Not 3 weeks - up to 2 weeks surely? Up to 10-14 days you can drop back to the lower dose you have chosen without tapering. Longer than that it may be harder.
no -2 weeks or rather 7-14 days. The 3-4 weeks mentioned is when you have got things under control and have stepped back down to just above the dose that caused the flare.
But as you’ve left it to build up -you may need to add more that the extra 5mg usually recommended -as suggested by PMRpro
I doubt anything so drastic is required: first, add 5mg to this dose at which the flare has occurred. If that doesn't make a difference, try a week of 10mg and back to 5mg.for a couple ofweeks, And next time - don't leave it so long!
Re-read the link. Perhaps 3 weeks at 9.5mg is a bit long? But maybe it would be better to get a little more into the system as the flare apparently started earlier than I realised?
I think my suggestion of 10mg for up to 2 weeks is where to start - and if after a week at 10mg, it is still a problem, it is better to add a bit more than stay at 10mg for longer.
I must admit I like your suggestion. I'm just afraid that my GP may hold his hands up in horror and that my powers of persuasion will not work. Although I have to say he listens and usually can be persuaded. This time it could be different because it was a registrar who treated me for the hands and if I am allocated to her she will need to discuss it with the GP who may not want to appear (to her) to be indecisive. (Perhaps she would benefit from the 'Treat to target' article which I gave to my GP!)
When I get the ESR result I may have ammunition (it seems that my body is one of those which shows raised ESR when in a flare).
Good result from GP telephone appointment. I recapped the last appointment and said 'no change, except shoulders now back to pre-diagnosis pain'. GP had prescribed an increase of 1mg Pred and gel for arthritis hand pain and had sent me for ESR blood test.
ESR up from 25 to 29. (Another in two weeks time and GP will call me in three weeks)
So I suggested that I go to 5mg above last doseage where I felt 'ok' (5mg) - i.e. 10mg for 2 weeks - then down to 6mg for three weeks, then return to very slow taper. Immediately GP agreed. What a relief. A good general discussion about pain etc.
Thanks for advice. Hopefully I won't get another flare but I'll know what to do.
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