Advice please

[Ann1A]

Advice from this wise and wonderful community please .... I started PMR 4 years ago, and by 1 year ago had reduced, with slight hiccups, to 11mg . Since then I've tried 4 times to get to/stay at 10.5, but each time I've gone downhill with debilitating fatigue the main factor, and after 4 weeks have given up, to increase +5mg and then stay at 11, where happy, for a while before trying again. I've done this 4 times now, always at a v slow taper. I think (but have had no tests) probably my adrenals are struggling, tho i know I'm on a high dose for that. I have been on methotrexate too, for 14months now, no noticable help. Recently I have done a little better... tried reducing again, and after surviving 6 weeks of fatigue at 10.5, I found slight improvement.... 2 weeks ago I had a week of alternating half decent days, then a week ago two days consecutive were bearable, i had some energy, then a poor day, then two more decent, I was elated but then I had some v bad news and crashed back into deep fatigue... which could be a coincidence.

Normally I would try to sit it out but I have an unavoidable family duty in 4 weeks time, which will be quite demanding for a couple of weeks.

I had always thought by then I'd either be reduced to 10.5, or else have failed, increased +5 then settled back to 11 for now ... however the intermittent better days have thrown me completely, i could be on the point of finally beating my personal 10.5 bogeyman dose.

I would really appreciate people's thoughts on whether to continue at 10.5 and hope to recover enough for the upcoming family thing, or abandon this dose now to have time to feel well and exercise a bit to build some muscle strength, which after a couple of months has seriously deteriorated.

I think probably the latter, but I feel so close to success. Many thanks in advance

[DorsetLady PMRGCAuk volunteer]

I would say adrenals -we often quote around 7-8mg as average -but 10.5mg is certainly not too high -it’s a very personal thing.

Unfortunately the more often you go up from that dose, it has a detrimental effect on struggling adrenals trying to reawaken.

If you can, you really need to stay at your current dose -and give your adrenals a fighting chance.

This link (Table 2) suggests staying at 10mg for year -

rcpe.ac.uk/sites/default/fi...

[Ann1A in reply to DorsetLady]

Thankyou for that swift reply. So, this is not the time for the " increase the dose for a few days then stick at the dose at which you last felt well " situation .

Damn ! I live alone and at the moment it's all I can do to grab a banana and a yoghurt at meal times. But, it is what it is. Thanks for the clarity.

[DorsetLady PMRGCAuk volunteer in reply to Ann1A]

You just mention fatigue - which points mainly towards adrenals - or has that always been the only symptom that occurs when you have flared in the past?

Obviously if it is a flare proper, then the usual advice would be as you suggest….but it doesn’t sound as if it is - and as I said IF it’s just adrenals, then you really have to try and sit it out….they can be pesky little blighters at times…..

If you try that this time around, and you do develop other flare symptoms, then I apologise if I’ve given you duff advice - and you know the usual procedure… and if that the case then you probably need to seek medical advice…but a Rheumy is likely to suggest you add in MTX [not sure if you want, or need that]..

[Ann1A in reply to DorsetLady]

Thankyou so much.

I have been on Methotrexate for 14 months. I haven't noticed any improvement at all, and would love to stop, but the Rheumy says I don't know how much worth I'd be without it !

Do you think I should ask for a test that homes in on adrenal function ?

The fatigue and total loss of mental energy only arrivedthe first time i tried to get below 11mg, before that the symptoms were pain, not fatigue.

The fatigue is mental as well... currently, if i have to walk to the kitchen and my dog is in the way, so i have to take 3 extra steps to go round him, it feels like the end of the world. (which it isnt !)

If it were not for the upcoming important family thing, dependant totally on me being able to collect a visiting grandson from the airport and drive him to Scotland, i would be less disappointed at needing to see it through.

Many thanks for your concern and support

[DorsetLady PMRGCAuk volunteer in reply to Ann1A]

You won’t get a test to check adrenals -11mg is perceived as too high for that to be a factor -although it may not be in your case anyway.

Most doctors won’t even think about it until you are below 5mg -sometimes 3mg.

Not sure what else to suggest, but PMRpro may have some ideas.. she’s been away but will catch up as and when…

[Ann1A in reply to DorsetLady]

Many many thanks. i will hold my course for now, forget about building up muscles, focus just on being well enough for airport drive . Just having someone to talk to, who doesnt just think i should pull myself together, makes a huge difference, as i'm sure it does to everyone here

[potterylady in reply to DorsetLady]

That was a great article Dorset Lady. Thank you

[Ann1A in reply to DorsetLady]

thanks for the link, i've printed it out and its very informative

[PMRpro Ambassador]

What about the MTX? My primary reason for refusing it was the fatigue. It took a few months to feel OK again - I was only on it a month!! But it doesn't appear to be providing a dramatic improvement in pred dose does it.

But really - don't know where you live but are you fit to drive to Scotland? How far is it?

[Ann1A in reply to PMRpro]

I'm doing it in two x 2.5 hour stages, with an overnight break. Should be manageable. Driving because sitting, is usually ok.

[DorsetLady PMRGCAuk volunteer in reply to Ann1A]

Yes - but you are still concentrating - and travelling is tiring..... but you have built in breaks, so good..

[PMRpro Ambassador in reply to Ann1A]

I've just driven from northern Italy to near Nuremburg 5 hours driving time on Thursday and back yesterday, took me just over 6 hours with a couple of brief stops each time. Sitting driving is by far the most comfortable more of progression for me!!! So I could hardly criticise but I wondered from what you had said.

[potterylady]

I'm in the same boat as you. I appreciate how you described your fatigue. I'm having the exact same situation while trying to taper.

[Ann1A in reply to potterylady]

its rotten isnt it, i feel like a zombie

[potterylady in reply to Ann1A]

It sucks. I miss my old life and health. Hoping we can improve. xx

[Ann1A in reply to potterylady]

WE WILL !

[Merryfield in reply to Ann1A]

May there be surprising joys to the trip that bring you mental energy. A tin of English cinnamon tea bags for the road? They contain black tea and thus caffeine. ☺️

[Ann1A in reply to Merryfield]

I asked for advice and you gave it ... thankyou ! Tho I don't drink tea I will adapt your suggestion and make coffee stops.😉

[Merryfield in reply to Ann1A]

And thus more loo stops😃.