Second post and hoping...........

[MamaBeagle]

Hi this is my second post and am hoping for the same and extremely useful responses! To recap - diagnosed with PMR in September 2017, whilst living in France. Immediately went on to 30mg of pred for a month then 20 then 10 and then down by one mg a month as I was, now I know luckily, symptom free. I'm now 2 weeks into 3mg. This week been moody, angry and then very tired and lethargic. Is this my adrenals do you think? Don't have any pains/nausea but just dog tired - and am a weak and feeble woman at the moment. Luckily I don't have any other underlying health problems and and very cross with PMR as am used to telling my body what I want it to do!!!

[tangocharlie]

It's hard being ill. I've learned you have to be kind to yourself not self-critical. Your body is desperately trying to heal itself, that's why it's sending inflammation to fight something it thinks is attacking it. No point getting angry with your body, nurture it, and your mind. I'm no medical expert so I'll leave that aspect to people on here who are, but your pred level might well now be too low, I had problems with adrenals coming off Preds and felt horrendous and weepy. I don't take Pred any more except for short doses if I have a bad flare. It takes years for PMR to go away. All the best, look after yourself.

[MamaBeagle in reply to tangocharlie]

Thank you TC. I will try - but I'm not finding it easy!

[DorsetLady PMRGCAuk volunteer]

Hi,

No point whatsoever in being cross with PMR - just a waste of time and energy - which you seem to need at the moment!

As we said in previous post, very quick reduction. I would hazard a guess that your PMR is still very much alive even though you have not got any other symptoms. Fatigue can be attributed to PMR as well as lazy adrenals! The best way to get your adrenals to spark is to reduce slowly - see attached -

healthunlocked.com/pmrgcauk...

personally I might try an extra mg or 2 of Pred for a few days and see if that makes any difference. Plus you can also request a ACTH simulation test to see if adrenals are capable of working

[MamaBeagle in reply to DorsetLady]

Thanx DL, sound advice which I will heed! I promise. Got a blood test on Wed so that may reveal something...............and then appt with doc so will ask about having ACTH test.

[PMRpro Ambassador]

Yes - know that feeling!!

Yes, I think you are experiencing poor adrenal function - so there's nothing to add to what has been said already.

[MamaBeagle in reply to PMRpro]

Thank you. I guess I've been in a bit of denial about the effects of PMR, this lethargy has teally hit home. Have decided, not to up anything before Wednesday blood test. Is that sensible or not?

[PMRpro Ambassador in reply to MamaBeagle]

Probably - but don't be in denial about going back up 1mg if it makes you feel better from the fatigue point of view. It will still be low enough a dose to poke the adrenals to start working again but would allow you to function while you wait.

[MamaBeagle in reply to PMRpro]

Gotcha ta muchly will up to 4 tomorrow

[Lin6075]

I have been trying and trying to wean down from the pred. I finally got to 6mg (with methotrexate) and had a terrible relapse. Fatigue was just crushing. So I understand what you are saying about lethargy. My bones thinned and I had a fracture. So I am doomed if I stay on pred and I am doomed if I go off. What a dilemma. I decided to go back up to 10 mg and start over. I'm Going off the methotrexate and doing all sorts of things for my bones.

I am trying the tapering method that is suggested here on this board.

Good luck with the tiredness. I haven't found to much to help that, lots of naps is the only thing that really helps. Sometimes Oat straw and b12 helps.

[Hidden]

Last time this happened to me, my Rheumy advised going back up to where I was last comfortable, then reduce much more slowly. I'm now into my fourth year, and beginning to feel better, but now reducing from 7, so a long way to go. Don't rush the reductions the underlying condition is probably still there.

Wishing you well, you're amongst understanding friends.