Feeling awful

[kingharold11]

I have had PMR for 5 years so should know the score but at the moment feel awful. I am currently reducing down from 6mg to 5and a half after being on 6 for the last 6 months for a lot of reasons. However I am feeling dizzy light headed and tired. I presume I am going too quick after 6 months at 6

[DorsetLady PMRGCAuk volunteer]

Hi,

Sorry to hear you're having problems

The fatigue may be due to your adrenal glands not working properly again. Mine took ages to kick back in - best part of 9 months all told, and between the doses of 6mg and 3mg.

As for your light headedness - have you checked your blood pressures - I feel a bit like that sometimes and when I check BP it's a bit on the low side.

Plus, are you using slow reduction plan? Guess you probably are, but maybe you need to say at 6mg for a bit longer.

Sorry can't be more helpful.

[kingharold11 in reply to DorsetLady]

Thanks for replying will have to slow it down a bit more

[DorsetLady PMRGCAuk volunteer in reply to kingharold11]

Yes. It's very frustrating I know, but the last thing you want to do so far along is to cause a flare. After 5 years - what's a few more weeks!

[kingharold11 in reply to DorsetLady]

I agree

[PMRpro Ambassador]

Just one thing to add to DL's wisdom: have you had your potential adrenal function checked with an ACTH-stimulation test, aka synacthen test? At this point your adrenal glands must kick in again to be able to reduce further and these are typical signs they aren't. If they have decided they aren't going to play any more you won't be able to reduce at all - so it makes sense to check if they ARE capable of waking up. If you know they can, then you can just keep going even slower and eventually they will get the idea. If they can't - then you know you have to stick at about 5mg or so, some people need more because however slowly you go, it won't work.

[trish29]

I wish you well kingharold 11, we have been in touch in the past ..it appears you have done very well in your reducing of steroid ..i wish my body would play ball and let me get down from 15 mg to 12 mg before I see my Rheumatologist again in November.Take care and I hope you feel better soon trish 29

[kingharold11 in reply to trish29]

Thanks for your message Trish nice to hear from you. Just been to the doctors BP is skyhigh. got to take another statin and I have had to put steroids back to 6 because I tried to get away with 5 and a half and it made me ill. Right now I feel crap head is swimming presumably BP. Wendy

[Trenny]

Re the light headedness: it just may be low blood pressure. Make sure you drink lots of water.