PMR still tapering

[RaisinBran]

Happy New Year to all! Approximately 3 weeks ago, I tapered dow to 1/4 of a tablet. I was having a great deal of pain and terribly fatigued. It was suggested on this site to jump to 8mg for a couple of weeks and then drop to 1mg higher than the one you felt most comfortable. After tapering from 8mg, I dropped to 4mg for two weeks and then dropped 1mg to 3mg. I have been on 3mg for 7 days and I am hurting. Shoulder pain. Neck pain. Cramps in legs while sleeping, headaches and the biggest problem is fatigue. Any suggestions would help a lot! I just can’t seem to get off of this drug! Thank you

[DorsetLady PMRGCAuk volunteer]

How were you when on 4mg? If okay, I’d go back to that….and give it another go. At such low doses, 1mg is a big drop…

Would say the fatigue in particular is down to adrenals struggling - so sticking at one dose for a longer period may well give them the nudge they need as well.

And to be honest, if your PMR is still active and/or your adrenals are struggling you still need the Pred to help. You will get off it in time..but not right now. So no point in suffering because on too low a dose, frustrating though it may be.

[RaisinBran in reply to DorsetLady]

Thank you Dorset Lady, I will try that. It is so good to have this site available. It truly gives you a "Go to Place". to get suggestions from knowledgable people who actually experience what it is like to live with PMR. Thank you!

[DorsetLady PMRGCAuk volunteer in reply to RaisinBran]

Hope it works..

[PMRpro Ambassador]

You will get off pred when the PMR is gone and your adrenal function is recovered enough to manage without a bit of supplementation.

When you say "1/4 of a tablet" - what dose is a tablet? If you were good on 1/2 a tablet - I'd take that and stick there for a while and see how you feel. But first you have to get back there.

How often have you been dropping the dose and do you do it overnight or do you use one of our slowed tapers? Every time you get into a flare like this, the next attempt tends to be harder. The secret is to be slower than a tortoise - and that is more likely to succeed than a trying to be a hare.

[RaisinBran in reply to PMRpro]

I have been tapering using the dead slow method. It took me over a year to taper from 3mg down to 1/4 of 1mg. Last blood work showed my cortisol levels at 16mg. Then i jumped to 8mg for 2 weeks and then back to 4mg for 2 weeks and then to 3mg where I am at right now. This would be the fourth time I have been down under 3mg but not able to continue. I will jump back to 4mg and see what happens. Thank you

[PMRpro Ambassador in reply to RaisinBran]

When your body rebels at the same dose more than once that is telling you you have arrived at your destination. You are NOT reducing relentlessly to zero, you are looking for the lowest effective dose. That is the lowest dose that manages the daily dollop of inflammation shed and created in your body each early morning. In your case it is now probably 3mg once you have cleared out the acculated inflammation. Keep yoyoing like this and it will creep up.

Cortisol levels at 16mg? Cortisol doesn't come in mg ...