Tale of Woe!

[stellafmdm]

Yesterday (Sat) I went for what I thought was probably a doable 2 1/4 mile walk to find that I needed to struggle uphill through 6 foot high bracken all flopping over my path !!! Only to discover when I reached the top that there was a perfectly good path just before the one my walk directed me to!! Needless to say this morning I am totally knackered! When if ever do the energy levels start to rise again with this wretched PMR? I'm just going down from 8mg to 7.5 for July if, that is to say, it works for me! If not then back to 8 once more.

[DorsetLady PMRGCAuk volunteer]

Hi,

You’re at a very tricky stage for some - Adrenal glands need to start kicking back in etc. So your energy level are all over the place!

Not set in stone that you have to reduce to 7.5mg on a given date - if you don’t feel right, then give it a few more days, or weeks until you feel better. Easier than going down and then having to go up again.

Are you using slow taper like this -

healthunlocked.com/pmrgcauk...

Also have a look at this for Adrenals-

healthunlocked.com/pmrgcauk...

[stellafmdm in reply to DorsetLady]

Thanks DL, yes I'm using the slow taper, and thanks for the other link, I'll check it out.

[SheffieldJane]

Your walk sounds pretty amazing - not something I could do and I am at your level of Pred. Well done! You’ll beat this thing.

[stellafmdm in reply to SheffieldJane]

Thanks for your encouragement SJ, sometimes I get a bit depressed with it! (don't we all?)

[SheffieldJane in reply to stellafmdm]

I am too depressed to reply. 😕

[Longtimer in reply to SheffieldJane]

Do we all struggle more in this heat...I feel low and in pain too....and the fatigue...well....

I tell myself tomorrow is another day...…...but it`s the bl...y same when I wake up.........I think that`s what gets to us, when it`s relentless....

[SheffieldJane in reply to Longtimer]

I spent most of yesterday on my bed with the fan on full blast, reading, writing and sleeping. The house is clean I did a lot during the week. I still felt guilty. I wish I could say that I feel better today but as you say, it’s relentless. Perversely, I kind of know that I would feel better if I went for a walk or a run in the car. It’s a motivation failure. All my summer clothes are in a warehouse in Southampton waiting for a ship. Perfect excuse 😂

[Longtimer in reply to SheffieldJane]

I know the feeling........dragging myself around at the moment........it must get better!........

[Rosbud in reply to SheffieldJane]

Oh ,I know this feeling well SJ , hugs x

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[Soraya_PMR]

Stella, I crashed and burned at the drop from 8 to 7. I didn’t think I could be more fatigued than I had been. Of course I could! This is PMR! I’m back at 10 this week, maybe 9 next week after chiro appt. My symptoms weren’t especially PMR resurgence, just an inability to do anything, nausea and diarrhoea. I’m fairly sure my adrenals aren’t playing ball.

[SnazzyD]

I only have GCA and I found 8-7mg (in 0.5mg drops) really hard - no energy, cranky, depressed, intestines up the creek. Sounds like you did very well with that walk.

[SheffieldJane in reply to SnazzyD]

Snap!

[stellafmdm in reply to SheffieldJane]

Thanks!!

[Linny3]

Two and 1/2 miles. I am lucky, many days, to get to the mailbox and back. Good for you

[Suedeshayes]

Hi. I’m at exactly the same stage that you are at-8 mg and just gone down to 7.5. My pmg started in October ‘17. When did yours start? I’m wondering if I’ve come down to quickly, but actually feel ok, touch wood. I walk 2 miles twice a week, go to aquacise and cycle, an electric bike!, however I worry that I’ll flare. Thanks, Sue.

[stellafmdm in reply to Suedeshayes]

Mine was diagnosed in Jan '17, but had been on the go for some years before that. It was only diagnosed because I asked the GP to refer me to a rheumy.

[PMRpro Ambassador in reply to Suedeshayes]

If you feel OK - you didn't come down too quickly. You can reduce at any speed you ike to try - providing you are watchful for any change in how you feel PMR-wise. It is a good idea not to reduce every week - if you do you may well overshoot the dose you are looking for: the lowest dose that manages the symptoms as well as the starting dose did. But if you feel OK - the reduction was also OK.

[Suedeshayes in reply to PMRpro]

Thank you, that is reassuring. I will stay on 7.5 mg for at least 4 weeks and then do the DL taper after that. I do have twinges of pain in my back and sometimes upper arm, but it’s not too bad at all. I had twinges before pmg, so maybe they will come back as I reduce. It can be an arduous jorney at times. This forum has taught me so much and appreciate all the advice. Thanks. Sue

[Suet3942]

Hi Stella. I’m doing the same taper as you. Down to 7.5 yesterday. Fingers crossed for both of us.

[stellafmdm]

Yes indeed, I'll be thinking of you! So far so good for me at any rate.