Hi All, I am just over 2 years in to PMR. Started on 10mg now down to 3mg. Struggling to get down to 2. Shoulders and buttocks begin to ache each time I drop, even using slow method. Over the past few weeks I have become aware of a sensation of having fine cobwebs over the back of one hand. It started on my face and neck and I was trying to brush them off. This only lasted a day, but then it started in my left hand and now seems to be a permanent fixture. Is this in any way connected to the PMR, or is it something else to be worried about? Does anyone else experience this?
Cobweb feeling on hands: Hi All, I am just over... - PMRGCAuk
Can't help on the cobwebs!
But on the reducing, maybe 3mg is your limit at the moment. So if it is, then stick with it for now, doesn't mean you won't get to 2mg somewhen, but as we always say you need what you need. Plus when you do try again, reduce by 0.5mg at a time. Easier on the body. F
If you are struggling to get below 3mg then accept that this is the dose you are looking for - the lowest dose that manages your PMR as well as the starting dose - for the moment. Rest at 3mg for a month or two and then try again. It doesn't mean you won't get lower, just not yet.
As for the "creepy crawly" feeling - that isn't anything I have heard anyone complain of in the context of PMR. I think some people have skin sensations due to pred - but it seems strange it has happened at such a low dose.
Thank you PMRPRO, it is my GP who is pushing me to 'get off the Pred as soon as possible ' that has been her mantra ever since I started. Because of my low esr numbers I don't think she fully accepted that I had pmr, despite all the horrible symptoms, and me regularly turning up in the surgery weeping with the pains before she reluctantly put me on Pred. My Rheumy says I should stay on 3mg for the next 6 weeks. I wish they would just leave me to work it out for myself. I told my Rheumy that Pain written down on a paper or in a book, is nothing like the real pain a person suffers in reality. He looked quite surprised as though he had never thought about that before. As for the cobwebs, never come across this before, it feels strange, but at least it is not painful. Blessings😊
I wish I could get all these blasted GPs (and rheumies) who spend their time telling patients to get off the only medication that manages their pain and put them into the suits they have developed for healthcare staff to experience what the elderly experience - that it is difficult to move, grip, bend etc. But extra tight so their muscles hurt too. And that 24/7 but with extra tight for getting out of bed.
And then explain that pred will relieve it - would they like to try it?
Have you seen this?
Print it out if you can - and make your doctors read it.
Thank you for that Pmr Pro, I have just read the document, it was like reading my own story, even down to getting stuck in the bath, unable to lever myself out because of the pain in my arms and shoulders. If only these medical types would make the effort to educate themselves, I was at the point of almost wishing they could experience what we do, just for one day so they might understand, but then I felt guilty, I couldn't be that cruel to anyone! Will definitely be printing this up and passing it on.
I wish after 18 years of various pain issues since back surgery in 99 that I could borrow a body for a day to see what it's like and how my pain gateways mess with me. Happy to go vice versa with medical establishment though lol.
Cobwebs, spiders and creepy crawls up legs and arms very common for me due to nerve damage etc. Makes you feel bonkers when you go to look or touch area and there's nothing there.
I believe Helen Twohig and co are writing another epistle. It should be required reading for all rheumatologists and GPs with PMR/GCA patients.
It makes me laugh - because I can hear the Yorkshire accents as I read the patient quotes!
Me too I'm from Lancashire and they are very similar, I love dialect, it is so homely and comforting lol
I know, I will be standing in a queue batting and swatting at myself, a few years ago they would have carted me off and locked me up. Lol
Lol. Sometimes I feel like the man off the carry on films
I experienced this on my back and one buttock for a while. No explanation I'm afraid. I was on 30 mg pred at the time. Now on 20mg. The sensation felt like being touched by stray threads on the surface of my skin. It went on for a couple of weeks and then stopped.