Lower dose reduction

[Groggrim]

Good morning, since reducing my pred dose from 7.25 to 7mg on Monday I have had side effects of withdrawal that I did not notice with previous reductions. Is this to be expected as the dose reductions get lower please? I got to 6.5 a couple of months ago but had to go back up. I don't want to keep going up and down which is why I am doing 0.25mg drops now.

[DorsetLady PMRGCAuk volunteer]

Quite likely .. and to be honest I wouldn’t have attempted it this week, with all that’s gone on. Sometimes you have to be a bit more selective about when you taper as much as how you taper.

healthunlocked.com/pmrgcauk...

[Groggrim in reply to DorsetLady]

Thank you, that's very helpful. I will return to 7.25. I have an appointment with my endo the week after next and will have to explain to him why I am not doing what he advised Too many medics offering different advice and the advice here is the only one that makes any sense (and my arms hurt this morning)

[SnazzyD]

What kind of side effects? It makes a difference to reply if it is low adrenal activity or PMR symptoms.

In my experience and likely being in remission I didn’t find reducing easier until my adrenal glands kicked in much lower down. The drops might be small but as a proportion of the previous dose it’s getting bigger each time. So at 7.25mg, 0.25mg is 3% of the total dose, unless I’ve got my sums wrong. When you get to 7, that 0.25mg is 3.5%. At 6.75, 0.25 is a bit over 3.5%. So as a chunk of the dose it is bigger each time.

So on the one hand the challenge is bigger each time but it is what it is which is why slowly is good, you can still feel each drop. When you do drop, take it easy for a week or so. I had to be permanently careful. As DL says, choose your window; it is likely going to be worse when you have a lot going on.

[Groggrim in reply to SnazzyD]

Thanks for explaining. I am realising that this journey is not as simple as taking a paracetamol for a cold. I was a bit naive in the beginning and it's 'only' been 7 months. I feel bad not seeing my daughter. She has been, and is still going through, difficult times, far worse than mine, and I feel I let her down not being there for her birthday 😞

[Stills in reply to Groggrim]

Your daughter would not want you suffering on her behalf. She knows you love her and therefore each day is a celebration of her life and the love you share. There’s is no benefit in beating yourself up.

[Excelsior80]

Since I got below 8mg each 0.5mg drop has been followed by a few days of feeling exhausted, gloomy, negative, and my mood and energy have suddenly improved by the end of a week. I'm assuming its adrenals. You dont say what side effects you are getting though, I dont get return of pain apart from slight twinges.

[Groggrim in reply to Excelsior80]

Fatigue, depression, nausea, weepy, muscle twinges. Mornings worse, improves as day goes on. What a carry on this is 🙄

[DorsetLady PMRGCAuk volunteer in reply to Groggrim]

Majority sound adrenal-like, muscles maybe, but as likely to be PMR….

[Excelsior80 in reply to DorsetLady]

Its a hassle .... I watch the twinges nervously myself, is it PMR springing back, or some adrenal thing, or something I would have completely ignored in the old non PMR days? So far I give it a few days and assume PMR would get worse, the others would get better .....

[Groggrim]

I just received a photo of my 20 month old grandson and it's given me a great lift. Today is better, thanks to those who helped me yesterday. GG x

[piglette]

Sounds like your adrenals are having to ‘wake up’ and are none too happy about it. I felt desperately tired all the time. Ideally take it easy and rest. It is a double whammy first the pain of PMR then the complaints from the adrenals!

[Groggrim in reply to piglette]

Lazy things! 😂

[piglette in reply to Groggrim]

Definitely lazy, and bad tempered on top of it! Perhaps some people have friendly ones??

[Groggrim in reply to piglette]

🤣

[Groggrim]

I have a video call booked this afternoon with my son who is working from home today. The day is looking better than yesterday. 😊

[Pixix]

I think it would be a good idea to explain to your GP & your endo that you are not coping well. I really do. You may need something to help you, Your posts here show that, & that you’ve not been able to cope with the disappointments that PMR brings. I feel a lot of your problems are tied up with emotions, weepiness, unhappiness. Would it be a good idea to talk to your family & explain PMR to them, & make them realise what you are dealing with? After 7 months, they may already have realised, of course!! Then you won’t get so upset if you have to cancel, or postpone events. Handling those things is important. If you are more stable, then your body is likely to be ready to taper. If your doctor & endo realise how difficult you are find the handling of tapering they will be more patient with you!

[Groggrim in reply to Pixix]

Thank you for your kind comments. I have made a further post this morning called 'a new beginning'

[Pixix]

Oh, I didn’t realise you’d done more, I thought I’d seen all your posts, sorry. Hopefully, soon you will be able to relax more & find some peace of mind. As was said in another of your posts by PMR Pro, don’t overthink it. PMR is really simple. Honestly it is. And a good outcome, unlike many diseases. Take care, & don’t forget to chill!

[ChrisBeeLoop]

Fatigue, no pain, just fatigue. It's a bummer!