PMR causing CTS and RA due to reduction of Steroids too soon?
Posted , 7 users are following.
I'm a new contributor, but I have been finding some of the coments on this forum really informative. I've been on Prednisolone since August for PMR, starting with 20mg, had to go back to maximum dose after the first monthly reduction, now on 7.5 and suffering from Carpal Tunnel Syndrome which started when I was put on blood pressure meds in January. I stopped taking the ramipril a month ago, but now am having very painful and swollen fingers...all except the little finger which is normal. Reading on here about 'flares' caused by too soon a reduction of the steroids I have checked back to see what dose I was taking when I felt quite comfortable, and it is the 10mg dose I was taking in January. Would it be a good idea to go back to that dose and how long should I stay on it before reducing by, say, 1 mg monthly?
0 likes, 19 replies
EileenH priscilla23271
Posted
I'm rather confused by your title? You mention nothing about RA in your post and neither PMR nor too fast reduction of pred will "cause" RA.
Carpal tunnel syndrome is commonly part of PMR - it may have been coincidence it appeared along with the BP meds. However - your reduction should always be on the base of returning PMR symptoms. If they return - you should stop reducing and go back to the previous dose where you were fine immediately Obviously that means the smallest step-down you can manage is best.
If you try going back to the 10mg dose that was good then you need to stay there until your symptoms have resolved before trying any reduction so that is a "how long is a piece of string?" question. 1mg is the most you should try reducing now - and even that can be too much for some people. But it may be that 10mg is the dose you need at present - it took much longer than 6 months for me to be comfortable below 10mg - it depends on the activity of the underlying disease and also how much of that 10mg dose you absorb as that can vary between 50 and 90%.
priscilla23271 EileenH
Posted
Thank you Eileen. I didn't know what else to call the swelling and painfulness of my fingers, as it hasn't been diagnosed, so I was asking if that could be what it is. But you have reassured me that it can't be caused by PMR, so it must just be part of the Carpal Tunnel symptoms. I am getting back some of the initial aching and stiffness in my body as well, so I will take on board what you say about waiting to get rid of symptoms before cutting down any more.
I've run it past my doctor and he says it's OK to go back to 10mg as well, so I'm hoping to see some results.
EileenH priscilla23271
Posted
I think you may have misunderstood what I said. PMR doesn't cause RA but they are sometimes confused with one another.
You can have swelling in your hands with PMR although a lot of doctors seem unaware of it. Late onset RA can sometimes present identically to PMR - it isn't unusual for patients told they have PMR at first to be told later that maybe it is RA after all but it isn't that the PMR caused RA, it's just because they can look so alike at first . Carpal tunnel syndrome is more likely to be experienced as tingling and numbness of the thumb and the other fingers except the pinky (it has a different nerve supply). I don't know if it causes swelling, I didn't think so.
But there are other causes of swollen fingers and it is something you should ask your rheumy about. And if you are just under your gP - maybe ask for a referral.
priscilla23271 EileenH
Posted
If nothing improves, that will be my next move.
I do have the tingling and the numbness constantly, and occasionally the'electric shocks', but the painful swelling is a new development. Strangely it is much worse in the am when I can't even make a fist, and gets better over the day which is why I thought it might be associated with the PMR. ...and then again because the little finger is perfectly OK I thought maybe it is the CTS. ....oh well it's a mystery just now but I hope to get to the bottom of it. Thanks for your help.
EileenH priscilla23271
Posted
Could well be the PMR causing the CTS. Does the pred help? I get electric shocks all over - I've always put it down to the PMR - it's a strange disease!
priscilla23271 EileenH
Posted
Seems like everyone is different!
EileenH priscilla23271
Posted
'Fraid so - that's what makes autoimmune disease difficult to diagnose and manage. It isn't that the doctors don't care - they don't know much about it either!
sharon35553 priscilla23271
Posted
Hi Priscilla,
Im at 10 mil also, not painfree like when I was at 20 mil which was wonderful for me, no pain and I felt fantastic. Ive been going up by 2&1/2 mil every few days and it doesnt seem to get me to that really comfortable stage only slightly better. I too am a bit confused as to whether I should go back to the 20 and stay a while or just stay now at the 10. I know we need to slow taper which I did follow, the method where you stay at old dose then new one for a day etc until you are down but am wondering if going back up to 20 from ten is too much of a jump. I would love to get back to the pain free stage but after getting down its kind of a gamble. also I have been getting dry eye really bad, not sure why its called dry eye if my eyes constantly water, I mean really wet all day long and Ive never ever had this problem.
Good luck to you,
Sharon
priscilla23271 sharon35553
Posted
Hi Sharon, that does sound like a bit of a gamble, and a shame to waste the time you have spent reducing the dose. I have found that I have had more pain each time I have reduced my dose, but after a few days it has adjusted itself to where it was. I'm only considering going back to 10 because these other problems have shown up. However I'm no expert and not the person to advise you on this. Good luck.
FlipDover_Aust sharon35553
Posted
Sharon, your eye is watering because it thinks it is dry... it's trying to lubricate itself. That's why it's called dry eye, even though it's watering all the time!
FlipDover_Aust
Posted
mimi1950 priscilla23271
Posted
When started on 20mgs, I also felt so good that Eileen had to remind me that I still had a disease . It's so easy to forget when you are feeling almost better than before coming down with PMR! For me it has been going a lot smoother since I realized that all you can expect from the Prednisone is a reasonably comfortable life (doable) for the duration while reducing to the minimum dose possible to minimize the side effects.
Another important lesson I learned from Eileen is that not all symptoms are side effects of the Prednisone nor the PMR!
Managing PMR is so confusing, there are so many variables and rheumis don't seem to understand it or want to. Thank goodness for this site!
sharon35553 FlipDover_Aust
Posted
EileenH sharon35553
Posted
To add to Flip's comment: dry eye is called that because for some reason the usual thick/viscous tears aren't being produced to moisten and protect the surface of the eye. So the eye produces loads of the thin ones to try to replace it.
The doctor can give you artificial tears to help - or you can buy them OTC. Your optician can also advise.
Hives can be a side effect of pred or it can be part of an autoimmune disorder. Or they can just happen, Try using antihistamines to reduce the itch, it may work.
robby6859 sharon35553
Posted