Confused of Norfolk

[tempusfugi]

I keep reading posts about members getting problems with their hands, wrists, arms, along with questions about nerve problems or carpal tunnel syndrome. Briefly, I am having similar, having twice reduced Pred to 8mg and been told to increase the amount I'm taking. My CRP suddenly increased from 8 to 13 and I am now taking 12.5 mg of Pred.

I have pins and needles in both hands, which leads to pain and coldness (as though the blood's not flowing into my thumb, forefinger and third finger). Added to this I am continually waking at night with pain in the arm, on whichever side I am lying, such that my sleep is constantly interrupted. The increase in Pred hasn't touched the pain thus far and I'm about to start my third week at 12.5mg.

The reason I'm confused is that I don't know where to turn to next. Thus far, I've seen two rheumies and am awaiting an appointment through the NHS to see a neurologist. I haven't seen a GP since diagnosed with PMR in April 2022. We have one GP in my area who literally deals with hundreds of patients so most people get to see a Physician's Associate, if needed.

I feel as though I'm diagnosing myself and floundering about in a sea of medics. I can't go on increasing the Pred, especially if it's not having any affect anyway. The pain doesn't feel like PMR pain to me, but who knows? Any thoughts or advice from you good people would be much appreciated. Thanks in advance...I feel you're the only people I can turn to, at the moment.

[PMRpro Ambassador]

Problems with thumb to middle finger are typical of carpal tunnel syndrome and while increasing the pred MIGHT help it often doesn't,

If a PA can't recognise potential carpal tunnel syndrome symptoms I would respectfully suggest they might need more training ...

[tempusfugi in reply to PMRpro]

Thanks PMRpro. I've been meaning to get back to you on this but thought I'd wait until I saw the PA again, which was on Tuesday this week. He's actually not bad, apart from the tatoos (!) and seemed to be more aware of PMR than others I've seen.

After 3 weeks on 12.5 mg, there is no difference in the hand/arm pain I'm having, in fact it's getting worse - pred doesn't touch it - so I'm hoping to follow up with an appointment with a neurologist, through Benenden, as I'm a member (don't know if you've heard of it, but it's something I paid into as a Civil Servant).

The pain in my arms doesn't feel like PMR pain so, after discussion, I am slowly going to reduce Pred again (0.5 mg over a period of 6 weeks). Meanwhile, I want to discuss taking MTX, as I'm being pushed to do by rheumie, with the neurologist plus the effect of Phenytoin on steroids. Also looking for tests for CPS, through the neurologist appt. The pain in my arms and hands is driving me up the wall, especially when sleeping on my arms. Fingers keep going numb too and I'm finding it more and more difficult to use them.

Really fed up with this lark. All these drugs into one poor body and all reacting on one another. Hope you are getting on ok. I have a feeling that things may be improving your end. Thanks again.

[PMRpro Ambassador in reply to tempusfugi]

I think that even after 3 weeks at 12,5, if you want to you could drop quicker than that if the pred has made no difference. Down to 10mg is never really a problem in terms of adrenal function and to 9 either if it comes to that.

I keep finding my ring and little fingers getting pins and needles if I have my arm in the wrong position - that's ulnar nerve. Left is worst but right happens too.

[tempusfugi in reply to PMRpro]

Tvm. Btw, is that tingling thing new to you or have you experienced it before?

[PMRpro Ambassador in reply to tempusfugi]

Been worse lately I think but been going on for a while - stops when I move my arm ...

[Bcol]

Morning Tempysfugi, I had some symptoms of CTS before my PMR diagnosis although I suspect I actually had PMR for quite a while before diagnosis. My CTS really started to first play up when I got down to 5mg of Pred. This was I the middle of Covid and neither the doc nor I was interested in surgery. As it can be be caused by the same inflammation of PMR we decided to up my Pred to 10mg and then restart my slowish taper from then. It worked very well and the CTS completely disappeared until recently when I was down to 2mg where it has reappeared in both hands. I talked about it with the doc a few weeks ago and he left it up to me to decide whether to try going back to 10mg or see if it sorts itself out. I tried an experiment on Friday and upped to 10mg Friday and Saturday and it pretty much disappeared again but I've gone back to my 2mg today as I didn't want to take such a big step without the doc being happy and on board with me adding another couple of years to my Pred intake (0.5mg reduction every 5 or so weeks).

[tempusfugi]

Thanks, Bcol, for your comments. You'll see by what I wrote to PMRpro above last night, just where I am with my problem, I must admit to being really fed up with whatever is giving me pain in my fingers/hands and even more so in my arms. I only managed just under 6 hour sleep last night, and was up every 2 hours with the pain.

HOWever, I feel there has been some progress today as I've now heard from Benenden (the society I pay a small amount into monthly for help with health problems). They have agreed to pay for me to see a neurologist at the Nuffield in Cambridge so it'll be interesting to see how I fare there.

Meanwhile, I hope your CTS is not causing you too many problems. You have really done well in reducing your Pred, so I do hope you continue improving in your PMR journey.

[PMRpro Ambassador in reply to tempusfugi]

Are they prepared to sub for a consultation with someone like Rod Hughes in Chertsey> He is a rather more pragmatic rheumy!

[tempusfugi in reply to PMRpro]

Hi PMRpro, yes, I do know about Rod Hughes and wish I lived nearer Chertsey, because I might well have seen him in the first place. Funnily enough, I used to live in Surrey but now in Norfolk, so not quite so convenient. I have watched a video of his which was v good.

To answer your question re Benenden, no, I don't think they would sub me for a consultation only. I think they used to do so but nowadays they are stricter with their dosh, probably because more subscribers are using them due to NHS waiting times. You really do need to be in a bit of pain, I think, and require tests.

[Bcol]

Morning Tempusfugi, we seem to get one thing under control the something else comes along. I think your problem is definitely more advanced than mine in that, at the moment I'm not getting pain in my arms, for me it's just wrists, fingers and hands. I'm doing a bit of a experiment in trying to find the lowest dose of Pred that keeps the CTS at bay, 10mg was fully successful, 7mg seemed to work, so trying 5mg at the moment. I will go back to 1.5mg/2.0mg in a couple days whilst deciding what to do. Your neurological appointment sounds good and it will be interesting to see what they come up with. Good luck with things and hope you manage to get some relief sorted soon. Have you tried the usual sorts of pain relief, Co-Codamol etc? They certainly have no effect on my CTS.