pins and needles

[NickWarwick]

Hi all.

Not posted for a while, but keep an eye on advice to others which is helpful. Thanks.

Diagnosed with pmr summer 2020. Gradually dropped down pred intake with one or two hiccups on the way, but nothing dramatic. Just depressing not being able to do what i want.

Reduced (successfully i thought) to 0.5 mg in early December and was approaching the new year thinking this was close to being done and dusted. Oh dear.

Some grim stress related issues at work though.

Around new year i began to feel pretty rubbish so upped the pred to 5mg for about ten days and then dropped back to 1mg (with 2mg on the way)

Didn't really work i suspect. Not helped by yet more bad news stress at work. Thanks Rachel Reeves...

Now a whole series of newish issues which i have never really had before.

- Pins and needles in my hands and legs. Not painful but make it difficult to go to sleep and also wake me up occasionally. Bit better during the day...but not gone.

- Eczema on face and around my eyes (lovely). Never had eczema in my life before.

- If sitting for a long time in a not very comfortable chair then the following day the back of my legs / upper thighs are v painful and take a while to walk off.

So i am guessing these are consistent with pmr despite not having been experienced before ?

An increase pred regime required for a while ? But what to drop back to ?

New year optimism gone. Going backwards at high speed. Depressing doesn't come close to the way i am feeling.

Nick

[PMRpro Ambassador]

Sorry to hear all that - Ms Reeves seems to strike at us all, working or not!! I'm glad I don't have UK level fuel bills in the absence of the fuel allowance!!

Eczema isn't typical of PMR - think that needs looking at - and not sure about the pins and needles either. WHERE are you experiencing them? The hamstring and thigh pain IS not unusual.

Sounds as if you are having a "proper" flare, i.e. an increase in disease activity, Were you OK after the 5mg burst? Maybe 5mg until you feel relatively OK and then drop to 2.5mg for a few weeks - just to see whether you need more or less than 2.5mg.

And the mental health aspect - do speak to your GP. Or look for another option for talking therapy.

[NickWarwick in reply to PMRpro]

Not sure i have felt right since new year to be honest ie the 5mg burst clearly didn't work. I was fine on 1mg before and had sat on that for quite a while.

Its taken me too long to get down to that level and i am not going back to 2.5mg

Pins and needles in hands and feet.

I dont need therapy i just need to get to the end of this s### journey (pardon my language)

I will try and see a GP as i also need to get some 5mg tablets again by the look of it

Nick

[PMRpro Ambassador in reply to NickWarwick]

I do appreciate the "I'm not going back" feeling - but possibly better go back to 2.5mg briefly than end up needing to go back to even more. But that wasn't really what I meant - I meant make sure that 2/5mg IS enough before going lower.

And with all this stress going on - your adrenal function maybe not quite up to dealing with it all either. That takes a long time to really settle down.

[NickWarwick in reply to PMRpro]

OK thanks

Best wishes

Nick

[Bedwell]

yes to pins and needles.. hands..

tickling.. skin feeling generally sensitive..particularly legs.. and I’m on just 1 mg..trying to get off the ???? As gently and sensibly as possible. Occasionally little stabs in feet. All neuropathy?!? That’s what Rheumy said!

[NickWarwick in reply to Bedwell]

Looks like its part of the deal then i guess. My GP seemed completely disinterested but that was only a text response to my on-line request for some help and some 5mg pills.

Some blood tests that were done by my rheumy recently are all normal apparently.

I will increase to 6mg for ten days and see how that goes. Feel a bit better already after 24 hours in truth

Thanks all

[Bedwell in reply to NickWarwick]

So much contradiction over pmr and steroids! GPS and Rheumy!!!!So good to have this forum!

[PMRpro Ambassador in reply to NickWarwick]

Normal blood tests don't tell the whole story though ...

[ngchgc in reply to PMRpro]

Not wrong there, saw my hematologist last Tuesday week and he said my bloods are good, however he said the GCA is still working against you, and will see you in six months, after your Pred is much lower and stable!