From 100 to 6

[Nitrobunny]

Tapering is definitely one of the most talked about topics here and slowly and I mean s-l-o-w-l-y and with with great care and listening to my body I am at 6. It generally takes me a week at the new dose to shake it out and feel as I did on the previous dose. I’ve been at six for a week and the injuries I have in my ankle and knee are showing up because they’re no longer masked by the pred. In fact below 10 they showed back up but the PMR is still behaving pretty well. The main difference now is I am unbelievably tired. Should I test for adrenal insufficiency or should I give it a little longer before doing so? I’m literally down to prednisone, synthroid and a pain medication and over all I feel the best I’ve felt in a decade or two however, I’m so tired I literally fall asleep sitting up and plan my car trips in short jaunts because I worry about my fatigue impairing my driving. Any suggestions?

[DorsetLady PMRGCAuk volunteer]

Hi Nitrobunny,

Usual recommendation is even more slowly to allow the Adrenal glands to get going again - they’ve been asleep for a long time and need a lot of coaxing in some cases. If was extremely fatigues between my drops from 6mg down to 3mg - 0.5mg a time and using my slow taper (roughly 4 weeks to get from current dose to new).

A test won’t show if they are working, only if they are capable of doing so, so it’s your choice really.

Meanwhile have a look at attached re activating glands and reducing

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[Telian]

Hi Nitrobunny

I'm not as expert as some who will be along shortly but you are doing very well to get to 6 and in the sensible way you describe, with no reaction I take it? Listening to your body is key and your continued improvement seems to proves it. Well done you.

What I can say is that your tiredness will start to improve once you get below 5/4 - when your adrenals kick in you will notice a difference, I was down to 4 when I actually said I haven't got the dreaded tiredness anymore. Sounds like you are not far off that now but you still need to pace yourself. If you want to test for adrenal insufficiency that is up to you but as I say more expertise is on its way!

I hope your improvement continues and sounds very much like it will.

[SheffieldJane]

It is amazing that you feel the best you have in a decade. Hang on to that thought! Your taper is going really well. I share the fatigue at 7 mgs, it is unbelievable! My Rheumatologist said that a Synacthen Test ( testing the capability of your Adrenal Glands to produce cortisol) is pointless until I am down to at least 4 mgs ( which feels like never). Apart from the deathly fatigue I don’t think you would be feeling good if they weren’t waking up. See what your doctor thinks.

[PMRpro Ambassador]

Give it a few weeks at this dose if you can - there is no hurry but if you can't function it is hopeless. But at present the synacthen test won't really show much at all, always supposing you can find a doctor who will do it/thinks it is relevant.

[Nitrobunny]

Thanks all for your time and your replies. It’s nice to know I’m not the Lone Ranger in the fatigue department. I have been tapering at .5 steps which is one reason why I believe it’s been going so well and as I said, aside from the constant fatigue, I feel great. I’ve just never been so tired before. Fortunately I am retired and a nap is something I can work in at any time. My Saint Bernard Samson is always a willing cuddle pal and is always on board with a nap. I will definitely give it a month and see how I do.

Thanks again!

[Purplecrow]

Hi, fatigue was the real challenge as I headed down in tapering. Took me quite a while to hit 3 mg, but then a flare resulted in returning to 7 mg. At this point, fatigue is not an issue, seems its different each time I reach a new number in the taper scale.

Patience and tolerance for ambiguity are really skills while working this PMR challenge...we have only a few trusted guides , (none of them the textbooks... ) so latch onto our revered wise ones, and stay in touch with this forum for the advice to guide your journey.

Kind regards, jerri

[Hidden]

I wish you the very best!!!! What a journey you've had, huh? ..but I can hear the optimism and hope in your post!

[Purplecrow in reply to Hidden]

Thanks M, I’ve been here since 2013, and the challenges seem to be unending... like peeling an onion layer by layer. My challenge is to keep heading toward the light....

Kind regards, Jerri

[Hidden in reply to Purplecrow]

Towards the light...

[Paulamac77]

Dorset Lady’s slow taper plan has worked for me so far and I’m down from 10mg in January to 7mg now. As long as I don’t try to do too much in one go (like cleaning all the windows rather than doing selected rooms one at a time) I’m not getting over tired. It’s as everyone here says, listen to your body. Little naps late morning and/or mid afternoon on a regular basis might help with the fatigue and you are being so sensible with your driving.

Good luck.

[Pym1 in reply to Paulamac77]

Me too! I listened to Madam Dorset. Don’t always do what I’m told, but from 11 in Jan l’m down to 8 one day, 7 the next. If that works for two weeks I’ll stay on 7 for 2/3 weeks then start alternating 7/6.5 and so on. Good luck. Pym

[Nitrobunny]

The super slow taper has definitely worked well thus far and the PMR is staying in check. (In fact all of my autoimmune issues are laying low. I’m almost afraid to say that out loud!) Even in the couple of days that have passed since I wrote this original post, the fatigue is moderately improving daily. I’m pretty happy about that 😊

[gtate1914]

It's encouraging to hear that others are successful in reducing.... I'm on day 10 of tapering, on 50mg now, but my left hand and wrist have been extremely painful intermitteningly for 3 days, veins are huge and look swollen. Anyone else experience this?