Things are going badly wrong

[NickWarwick]

Hi all

Feeling really grim at the moment....but not entirely sure if this is PMR related now.

I upped by dose to 6mg for the last two weeks having gone through what i felt was a flare in January. I had previously sat very happily on 1mg for several months. An attempted drop to 0.5 mg seemed to be the cause.

Some of the symptoms have not abated, but have actually got worse. In summary

- Pins and needles. But actually better described as tingling in arms and legs esp hands and feet. Best described as the sensation you get when you try to warm up freezing cold body under a hot shower or tap. I am thinking back to school days and freezing to death on a rugby pitch and then having a shower.

This kept me awake much of last night, and this morning i feel like i have been beaten up.

Its just not a joint issue its all peripheral limb surfaces.

- My sense is my hands and feet in particular are freezing cold much of the time. So poor circulation perhaps.

- Slightly lightheaded with slightly 'shimmering' vision. No scalp or jaw issues so i am ruling out GCA

I was talking with my brother about this and there is some cross over with something he was diagnosed with many years ago. Hughes Syndrome aka 'sticky blood'

Not sure if there is any cross over with this and PMR. Both seem to be anti immune issues ?

I am going to have to see my GP now. Can't carry on like this any more, but your thoughts would be most welcome

Best

Nick

[PMRpro Ambassador]

Not having scalp or jaw issues does NOT rule out GCA, not everyone gets every symptom,

In the early days of PMR I had patches of a similar sensation - like hot water onto an already burned area of skin? It improved with pred unlike yours but I always assumed it was some version of neuropathy.

However - IS it REALLY PMR you have? Does anything seem to fit amongst this lot - a differential diagnosis of Raynaud's which is suggested by your cold hands and feet. It isn't always immediately the white fingers syndrome.

emedicine.medscape.com/arti...

One of the things suggested is SLE, lupus. And that is associated with Hughes. PMR has a lot of mimics and SLE can be one:

pmc.ncbi.nlm.nih.gov/articl...

Not saying it is - but the wrong diagnosis IS something that MUST be considered. You are male and in a younger age range for PMR - OK, you are also not particularly typical for SLE but you have something that is almost certainly rheumatological and you need to see a rheumy for a proper workup.

[NickWarwick in reply to PMRpro]

Interesting . Thanks for the reply

I saw a rheumy when first diagnosed during lockdown in 2020 but i had no faith in her as she told me everything would be sorted within two years. That didn't tie in with other information i had of course

I have a better rheumy now i believe, who has done blood tests at intervals and seems relaxed about progress

I suppose the main point to make is that tingling arms / legs and apparent circulation problems has only emerged in the last two months. Never been an issue before.

Maybe its been masked by pred though.

I will seek an appointment with my GP but i really need to see my rheumy again as you suggest. Trouble is , he has historically been booked up for months in advance.

Not sure how i feel about the suggestion that i might never have had PMR.......just want to feel better....

Nick

[PMRpro Ambassador in reply to NickWarwick]

Didn't say you NEVER had PMR - but that your PMR was a forerunner of something else that may not have been recognised. And it was pred-responsive. Or you have both - that happens too,

[DorsetLady PMRGCAuk volunteer]

Hi Nick, sorry to read this

Tingling/pins&needles could be Raynauds -it is mentioned with PMR at times.

nhs.uk/conditions/raynauds/

Not sure I would totally rule out GCA with sight disturbances -I’d want that checked.

Lightheadedness could be related to adrenals struggling

Whatever it is -you do need medical input..

[NickWarwick in reply to DorsetLady]

Thanks DL

[Almostaweed]

Dear Nick, I feel I am definitely experiencing circulation issues on my PMR/Pred journey. I have looked up 'Pred related circulation issues' and found an article which said something like: your circulation can be 25% less good on Pred.

When I was on 15mg the burning in my wrists and ankles was intense. I also had an acute near fainting episode which landed me in A & E and seemed to relate to my heart and/or the circulation to my head. I still don't know.

A couple of days ago, on 4mg Pred (having gone up from 3.5mg) I was wailing in this chat about the numbness, burning and tingling in body, mainly head, wrists and ankles. In the last two days I have reduced to 3.75 and it has subsided a bit.

Curently my most noticeable circulation issue is that in the bath my left leg and foot is often numb and blue and white. Before getting PMR I had a degree of Raynauds and peripheral neuropathy, and I think both are made noticeably worse by Pred.

So my conclusion is that in my case Pred seems to be causing circulation issues. I have an idea that you might get some relief if you are able to reduce the Pred a very little without getting a flare. And I wonder if small raises in Pred when at low levels may have an exaggerated effect on people like me who respond to it with circulation issues.

But of course I could be wrong about everything!

[PMRpro Ambassador in reply to Almostaweed]

"I also had an acute near fainting episode which landed me in A & E and seemed to relate to my heart and/or the circulation to my head"

A common cause of that can be arrythmia where your heart beats irregularly. If the heart rate is slowed enough, the blood supply to your brain is reduced - and may be reduced enough to feel dizzy and even faint. I experienced that some years ago and had a 224 hour holter monitor for both ECG and BP. During the BP one it just so happened that I had a dizzy spell just as it started to record -and my BP was very very low in that reading. Everything else was absolutely fine so it was ignored. With the ECG recordings it never happened until I had a drug reaction that triggered the arrythmia really severely. While hooked up to the monitor they noticed that tachycardia (very fast heart rate) was followed by periods of bradycardia (slow heart rate) where there were pauses of up to 7 seconds! That is quite long enough to cause a dizzy spell and even a faint if you are standing. I was fitted with a pacemaker - no more problems.

But my irregular heart beat isn't due to pred - it can be - but to the autoimmune part of the PMR itself which damaged the electrical supply in the heart that governs heart rate.

[Almostaweed in reply to PMRpro]

Dear PMR Pro, yes I am inclined to blame Pred for everything and forget that PMR itself may be to blame. I omitted to say in my wail the other day that my tingling may have been exacerbated by some very peppery food I was given. It is not a spice I am familiar with, seemed just peppery with no flavour. The cook did apologise!

[PMRpro Ambassador in reply to Almostaweed]

Lots of people do - but pred isn't always the culprit!

[Almostaweed in reply to PMRpro]

Oh and yes I have got a slight arrythmia or something like that. Am seeing the heart specialist soon.