Whatever next

[Deneez99]

So after 3yrs and 2 weeks I am currently on the last 5wk taper from half mg to zero I have 2 weeks to go.Now after several weeks of experiencing pins and needles in both hands this has got progressibly worse until I have not much feeling left in my finger tips. I wake in the night with excruciating pain.

Went to the doctors this morning haven't much faith but she diagnosed carpel tunnel. Suggested wrist sprints, cortisol injections or wait for surgery possibly for 2 yrs or more.

Any advice would be welcome

Thank you Deneez99

[PMRpro Ambassador]

It can be part of PMR - and it isn't uncommon for even a low dose of pred to keep the inflammation in the wrist to a level that doesn't cause symptoms.

It is possible that continuing with a low level of pred might hold it - and also possible that this is a sign that your PMR is still active at a very low level and if that were the case, the symptoms MIGHT be the beginning of PMR manifesting again because you have gone below tha amount of pred you need.

I'm sorry to put a dampener on things - but it is important to bear this in mind and not risk a relapse.

[Deneez99 in reply to PMRpro]

Thank you sounds sensible. Would you suggest I up my dose to say 4mg for a few days then back down to 2mg and stay on that. If my doctor will give me another prescription..

[PMRpro Ambassador in reply to Deneez99]

It would be worth a try, If it works, then you have time to experiment with wrist splints - if you still need them - and other options until the NHS referral takes you somewhere. It may even be that once it settles 1mg is plenty and any doctor who thinks that is risky needs a reality check, If it doesn't work to improve matters, you have lost nothing,

[Louisa1840 in reply to PMRpro]

Pro given the number of posts I've read recently about people stressing over being on very low doses of pred, do we need to stress again that low doses (say below 5 mgs daily) are not that harmful? Or have I got this wrong? I'd LOVE to be below 5mgs......

[PMRpro Ambassador in reply to Louisa1840]

So would I - but I gave up worrying about my pred dose a long time ago!! I did get a bit concerned when I was in the upper teens and rising though!

The aim should be to get to that sort of dose - and for a long time doctors DID stop panicking once the patients got to 8mg and below. Not sure why it has changed - a lot of more experienced docs are still fairly relaxed about it.

[DorsetLady PMRGCAuk volunteer in reply to Louisa1840]

I think many [too many] doctors are still anti Pred, especially when it's prescribed long term in PMR etc - and that feeling gets passed to their patients - which in turn makes them more anxious about getting off it.

We all know there are some patients who struggle with Pred - so understandably they want to be off it asap...

The mindset could well be different [from both parties] if it were a drug that was keeping them alive [for example heart or cancer drugs] rather than one that they perceive as being less important because it is "just" controlling a disease until it goes into remission.

Some of us "know" the importance of Pred - and certainly below 5mg it's much less harmful that a lot of others.

[Deneez99 in reply to DorsetLady]

I have decided to go back to my doctors and insist that she gives me a repeat prescription for my Pred and allow me to decide what does works best and not feel the pressure to come off them. This forum has helped me so much I cant thank you all enough. I will be here for longer now. Xx

[DorsetLady PMRGCAuk volunteer in reply to Deneez99]

🌸

[Deneez99 in reply to DorsetLady]

I value your knowledge and advice so please could you suggest what dose I go back to to try and calm my flare which currently is manifesting in CTS and Osteoarthritis in my finger joints. I have gone up from half mg to 4mg for the last 3 days. Some improvement but still a lot of hand pain, pins and needles and numb finger tips.Any help will be much appreciated xx

[DorsetLady PMRGCAuk volunteer in reply to Deneez99]

Maybe try 5 or 6mg for a week or so -although usual advice is to add 5mg but you may not need that much - then down to 2.5 or 3mg -as 2mg was just a bit too low.

[Deneez99 in reply to DorsetLady]

Thank you xx

[Deneez99 in reply to DorsetLady]

I have been on 5mg for a total of 8 days. 2 days ago following a doctors appointment I had my bloods tested. Results today show CRP at 2 and ESR at 12 never been that low in the whole 3 yrs.My question now is do I go back to .5mg or should I go to say 2.5 mg

Any advice is most welcome and appreciated xxx

[DorsetLady PMRGCAuk volunteer in reply to Deneez99]

How you you feel in yourself? If okay then drop down to 2.5mg for another week…. And then to 1mg….. make sure you’re okay at that and then recommence taper proper….

[Deneez99 in reply to DorsetLady]

Thank you so much I value your advice and will do as you suggest. If any problems I will get back to you. Xx

[Mfaepink1973]

I had Carpel Tunnel problems several years before I got PMR and those are the same symptoms I had and the pain at night especially. Over about 8 years I had cortisone injections 3 times in each wrist which relieved symptoms then eventually had the operation. I was sent for a nerve test to confirm it was carpal tunnel before I had the operation. The pred you’ve been taking has probably controlled the symptoms until you dropped to too low a dose for it to do that.

[Deneez99 in reply to Mfaepink1973]

Thank you good advice xx

[Bcol]

I had the same problem a couple of years ago when I had got down to 5mg the CTS became a lot worse. After discussion with my doc, neither of us was interested in surgery at that point, I went back up to 10mg where it disappeared completely. I then tapered back down in my normal way and this time it didn't start reappearing until I had got to 3mg, put up with for a while then went back to 5mg and it was under control again. I'm on 1mg now and it has reappeared, not dire but enough to be a nuisance so planning on giving doc a ring at some time and seeing what he suggests this time. Wrist braces work for me at nighttime, although I don't always wear them.

It also depends as PMRpro says about how happy you are with taking Pred, it's not a bother to me as I don't get any of the side effects and if it gives me a good quality of life then I'm all for it. Also, I don't get any pressure from the Doc regards stopping Pred as soon as possible if not earlier, he is very happy to let me run with what I feel is best for me. At the doses we are talking about it's not a problem.

[Deneez99 in reply to Bcol]

Thank you so helpful for me xx