Morning all. l was fairly happily bumbling along on 5mg when the Carpal Tunnel Syndrome that has been slowly making itself more known over the last few months decided that it definitely wanted to come and play. I decided that I needed to do something definite about it. I had a chat with the doc, and he agreed that going up to 10mg for a while (2 – 3 weeks) was worth trying to see if it brought it under control and to report back later (appt in second week of September).
The move to 10mg after nearly three weeks has been successful, not 100% but still good, and the CTS has decided that coming to play was not as fruitful as it used to be. My thoughts are that I now taper down again using my usual 5 - 6 week or so taper and come down slowly in the hopes that it will stay away. Does that sound a sensible way to go?
If that doesn't work and staying at 10mg keeps it under control, then I’m happy to stay there, for as long as it takes, until other options (surgery I guess) become available.
Just need to have a clear strategy before I talk to the doc.
Many thanks as always
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Bcol
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I suppose it depends on whether it is a coincidental separate issue or whether it is part of the PMR which is feeding it. What dose were you on when it first grumbled?
That is a very good question!! I have a funny feeling that I talked/mentioned it to the doc before diagnosis, but I'm also pretty certain that I had PMR for a good few months before diagnosis, so I do think the two could/might be connected. It has certainly got worse as I have decreased my Pred dosage and dramatically improved on going back to 10mg.
My CTS reared it's ugly head when I got down to 6mgs. Went back up to 10 which improved it and slowly reduced again 1mg at a time to 7 then 1/2mg at a time. Had nerve conduction studies and release surgery at 5.5mgs which has been successful. Practitioner said she doesn't usually do the surgery above 5mgs. Due to the NHS difficulties with the pandemic i saw the surgeon privately then he put me on his NHS "urgent" list which was a 6 month wait. Hope my experience helps and good luck.
I was diagnosed with CTS at about 8mg of Pred, & advised to wear wrist braces every night.I then developed arthritis & the hospital issued me with ‘proper’ night braces,far better than those I purchased, and bent the metal to fit etc. Having worn them 80% of time I can say it’s stopped the numbness & pins & needles. At my next arthritis appointment in 3 weeks I shall ask how long to wear the night braces before finding out if they’ve well & truly sorted it...or is this for life!! My gp said it goes together with PMR..for some people!
I will be equally blunt - on this forum we all require corticosteroids to manage the inflammation and symptoms of our illnesses, PMR and GCA. There is no other option for PMR and only limited access to Actemra/tocilizumab for GCA. Bcol is on the pred for PMR - the probable underlying cause of the CTS since they are often found together. The goal here is NOT to "get off pred" but to find the lowest effective dose to manage the symptoms until the underlying autoimmune condition burns out and goes into remission. I assure you, it isn't "that simple". No, pred doesn't cure anything - but it is the only option to manage our illnesses.
Sorry for late reply but been out on family duty. I do understand tablets, joints and pain as I have been managing my OA for about 40 years. I'll join the "blunt" club.
a) I'm pretty sure this has only been an ongoing issue since diagnosis of PMR.
b) the goal, for me, is to attain a good or at least the best quality of life possible whilst taking the least medication as possible. Not the same as zero.
c) when I started this journey I was carried into hospital in excruciating pain and unable to move. I came out with some little white tablets which in a matter of days removed the majority of the pain. I was also able to move, bit wobbly and unsteady, needed walking sticks for a couple of weeks, but ok. In a matter of a few months I was back to very much my normal way of life, walking the dogs and generally feeling ok.
I do not have a hatred of my little white Pred tablets they have given me my life back. They do a fantastic job and do not have an alternative.
All tablets do/can have a downside to them, most effects can be mitigated if you take care and so far I have been lucky and had few if any side effects.
If I didn't have to take them, then that's fine, but I like many others I do.
I never said I would stay on 10mg for life, it would have been until the other options had been considered, tried and were successful. That at the present time would probably be quite a while.
However, if my QOL was dependant on taking 10mg, or more, of Pred for a very long time I would happily do so.
Sorry PMRpro but I'm going to disagree with you on this one. Please show me where Prednisone is used to cure CTS. CTS in itself is inflammation of the median nerve, and the only way to fix it when severe enough is surgery - masking it with Prednisone isn't fixing anything (it's a band aid solution). He was fine on 6mg for treating PMR.
If it was the other way around (CTS surgery first, followed by PMR), then I would totally agree with you - since treatment for CTS has already been done. In fact, if Bcol did have surgery, he may need to go up in dose for awhile (until the hands heal).
"Injecting corticosteroids near the carpal tunnel is a common treatment. Steroids reduce swelling in the connective tissue, which relieves the pressure on the median nerve. The benefits of corticosteroid injections have been tested in several studies. In these studies, the corticosteroid injections were compared with either non-surgical treatments or injections that didn't contain any medication (placebo injections).
They found that symptoms improved in many people within the first 2 to 4 weeks of treatment:
Symptoms improved on their own in about 30 out of 100 people.
Symptoms improved after corticosteroids were injected in about 75 out of 100 people.
In other words, the treatment provided noticeable short-term relief from symptoms in about 45 out of 100 people.
One of the studies suggests that giving a single injection is just as effective as dividing the dose between two injections given eight weeks apart."
And I'd argue the effect on the swelling around the nerve IS curative
It isn't used to "cure" PMR either, it is used to manage it in the absence of a cure. But it is common for CTS to be part of PMR and then pred does manage the inflammation that is causing the nerve to be pinched.
In other words, the treatment provided noticeable "short-term relief"
Not a cure or a fix...
Possible side effects from CTS is trigger finger, and injecting corticosteroids into the base of the finger(s) can cure this.
As a matter of fact, Prednisone is providing me relief from 3 trigger fingers after bilateral CTS surgery earlier this year in my left hand, as well as treating my PMR.
Yes, 3 trigger fingers from having CTS (only happened after surgery).I mentioned that Prednisone has given me total relief from them.
So, as I continue to taper off Prednisone, and if the trigger fingers come back, should I increase the dosage of Prednisone to provide relief again (since I know that works).
This is basically the same issue Bcol has with CTS/PMR, and I wouldn't think increasing Prednisone for trigger finger is the solution. Independent of PMR, I think one would deal with the issue as if they didn't have PMR.
Wouldn't surprise me if it was inflammation related. I feel that's the cause of mine. When I was getting my stitches out for CTS surgery I told the Hand Surgeon about them and he said if they didn't go away in about a months time to call him and he would give me the localized steroid injections. I was into around my 6th week after he told me that, which is close to when I started Prednisone. I went from 15mg to 10mg to 5mg in 6 weeks (my schedule has been revised). When I got to 5mg, the trigger fingers started to get more severe again. As long as I kept my hands active, or did hand exercises it helped a lot. I'm just hoping the same thing happens to me that happened to you, that it eventually stops. If it doesn't, I doubt localized injections will do anything long term, so I'll probably have to have tendon surgery to correct them.
I consulted an osteopath about my carpel tunnel syndrome and she helped me get rid of it with exercises to re-align my shoulders. So much better than surgery worked out for my 17year old son. He was set up to be studying music (cellist)and had to give up all thoughts of that, because the surgery was a disaster which couldn't be corrected.
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Happy New Year, resolutions, or not, and tapering
Update from me...
Any experience of having GCA and Actemra (TCZ) being discontinued while still trying to taper steroids
Just don't know what to do with myself
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