ANOTHER FLARE + LOW HAEMOGLOBIN

[RolyB]

After 4-1/2 years I thought I was about clear of PMR when in mid-May I managed to taper to zero prednisolone. I felt all right for two weeks and then the symptoms gradually came back. After a further two weeks I went back to taking 1mg pred a day and I felt O.K. In the mean time I managed to get a blood test at the GPs surgery (even though I’m shielding) on day-four of going back on the medication the results of which have been notified today as ESR 64 CRP 35, and haemoglobin 107 (previous one had been 130). The GP is consulting others as to the best course of action as I don’t feel too bad now. Apart from the flare which will mean I’ll no doubt have to go even higher with the steroids, I was wondering whether there could be any connection between the flare and low haemoglobin result.

[PMRpro Ambassador]

There is a form of anaemia associated with chronic/autoimmune diseases. It may be that - though a good doctor will look to rule out other reasons.

If it were me I'd take 5mg for a week and - if you really feel OK now - drop back to 1mg and keep an eye on the blood markers to see they continue to fall. There are quite few people who find that 1mg or even 1/2mg is enough to keep things under wraps but zero is too far.

Pref Dasgupta said in a webinar a couple of weeks ago that he keeps patients on 2-3mg pred for a long time - it seems to avoid flares like yours. If 1 or 2mg keeps things OK I wouldn't be in a hurry to stop it again.

[RolyB in reply to PMRpro]

Many thanks for reply PMRPpro

Certainly a lot of food for thought there. The GP has come back after consulting others to suggest that as I’m feeling all right on 1mg, to stay on that and to have another blood test in three weeks time. I am, however, inclined to increase the dose for a brief period (a week) and then return to 1mg. It looks like I’ll have to resign myself to the fact that I’ll never be able to get to zero and be symptom free.

On the subject of anaemia, they said that as my haemoglobin has been low before and it had returned to normal she gave me the impression that they weren't too concerned about it at present. However, I will certainly do some research in anaemia associated with autoimmune diseases.

Thanks again for your useful information.

Regards

Roland

[PMRpro Ambassador in reply to RolyB]

4 1/2 years is not long in the great scheme of PMR things! Don't give up yet. You seem to have found a dose that works - and one that is very low.

[RolyB in reply to PMRpro]

Thanks.