Ache and pains

[Flosy]

Hi.am on 5mgs at moment,would it that is making feel really tired and exhausted.pains in arms,shoulders,legs and in my back down my hip.i am working 16 hrs a week,finding really hard,but I need to way things are.any ideas and advice would help.thank you.

[DorsetLady PMRGCAuk volunteer]

Hi

Tiredness/exhaustion could be down to adrenals stuttering-have a look at this -

healthunlocked.com/pmrgcauk...

Some of the aches could be as well, but sounds more like you have gone to low on steroids .

Maybe return to last dose you felt okay for a week or so and see if there’s an improvement -if not you may need treat as a flare -see attached -

healthunlocked.com/pmrgcauk...

And when you commence your tapering -only 0.5mg a time and a slow tapering plan -will help both your illness and your adrenals.

[Bobbury in reply to DorsetLady]

Hello, Ive just read both the attachments and I have to say they both make for good reading.I've had PMR for over 15 years now and it's the first time that this illness has been exactly explained to me and the reasons why it happens. I cant remember the last time I had any tests done, if any at all! I'm convinced my GP surgery don't take any interest in you until you have a problem and then they are faced with doing something about it. You have to push them to do something and when you do get to see them they can't get rid of you quickly enough. Anyway, thanks for the attachments they were very helpful and keep up the good work. You and all the team deserve some form of recognition for the work you put in on this platform

[DorsetLady PMRGCAuk volunteer in reply to Bobbury]

Thank you -the difference about our advice is we’ve lived through it/are living through it - doctor’s aren’t. And some too often, as you say, don’t believe us anyway.

[Missus835 in reply to Bobbury]

Thank you so much for all the info you post. Were it not for this support group, I would be able to find out absolutely nothing - and you're correct in saying the doctors do not get it, because they have not been through it; not that I would wish this upon anyone. Thanks again.

[Bobbury in reply to Bobbury]

Absolutely spot on!!

[lkcreedon in reply to DorsetLady]

Excellent attachments Dorset Lady. Great to have. I'm building up quite a file from this site 😊👍

[Karenjaninaz in reply to DorsetLady]

But 1/4 mgm might be better at doses 5 and below- at least for me.

[DorsetLady PMRGCAuk volunteer in reply to Karenjaninaz]

If you need that small a change then yes by all means, but I think the majority can manage 0.5mg. Unfortunately there are some like you who cannot. As we always say…do what suits YOU.

[tangocharlie]

Might be a any or all of a combination of things, over-doing it, too low a dose of steroids for the time being, adrenals waking up. When I'm in that situation I try temporarily increasing the steroids for a few days to see if it improves things and it's usually the case. I'm a fellow long-timer and similar age. There is no way I could even work 16 hours nowadays I've had to give up work. One of the questions is, have you still got PMR in which case you need the steroids, have you had any blood tests or scans recently to find out more about what is going on? When on 5mg Pred you are just about low enough to have a PET scan (which would show if the PMR is still active) and adrenal tests. In my case, if I don't take enough steroids the inflammation only escalates and is even harder to get back under control. You need more help and tests

[PMRpro Ambassador]

When did you last feel well? Most people who work tend to need a bit more - for obvious reasons!

[Flosy in reply to PMRpro]

Hi.it all started last weekend.when I was on around 8 til 7mgs.

[PMRpro Ambassador in reply to Flosy]

Are you telling me you have dropped from 8 to 5 in a short time?

[Flosy in reply to PMRpro]

No I dropped 1mg at a time,a month.

[PMRpro Ambassador in reply to Flosy]

At this stage that is still pretty fast. Why did you say "it all started last weekend.when I was on around 8 til 7mgs"?

[Flosy in reply to PMRpro]

Yes it was last Saturday,really felt ill.

[Flosy in reply to Flosy]

Sorry I was on 5mgs then,been on that dose since 16 th.may.

[PMRpro Ambassador in reply to Flosy]

You are possibly a little bit too low - and after 3 weeks the inflammation has built up enough for you to feel.

[Flosy in reply to PMRpro]

What do you think I should do go back up,by how much.thank you for answers.

[PMRpro Ambassador in reply to Flosy]

At least to the dose where you were OK - but you need to talk to your doctor about it because it will mean you need a bit more pred and he is supplying it. We would say you need to get stable again and only try smaller reductions staying longer at each before trying the next stage.

This is a difficult stage - you have to be sure the PMR is still managed AND that your adrenal function is also catching up. The best waty to do that is to reduce in small steps and taking you time - the lower the dose, the slower you need to go.

[Flosy in reply to PMRpro]

Thank you.

[PMRpro Ambassador]

What do you mean by attachments? You can copy and paste any text into Word yourself and make your own collection.

[DorsetLady PMRGCAuk volunteer]

As PMRpro says you can copy and download anything yourself.. but if it’s an original post that I have written I have word copies of most of them. Just send me a message .