Hi, I have had PMR for about a year. I was on 15 Mg of prednisone. I was able to reduce to 6 1/2 MG but still have some pain especially at night. I have been splitting my dose am (7am) and pm (5:30). I started methotrexate 10 MG once a week for two months. Last night I had a major flair at 2am and took an extra 3Mg of prednisone. I also seemed to have developed carpel tunnel in my right hand. It goes very numb and it is very painful. The doc say I should get a cortisone shot. Does anyone else have carpel tunnel with PMR?
Very disappointed in the yo-yo ing with prednisone. I hope the methotrexate does something.
Enjoy your day and Thank you!
Kim
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Plains
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Carpal tunnel syndrome is quite common in patients with PMR though it could be coincidencesince both are common in the age group of women most affected.
I'd get physio advice, not just a cortisone shot. You need to treat the cause of the carpal tunnel so it doesn't recur as it will if you only get an injection of medication. I knew people at work who developed carpal tunnel from repetitive strain, and they wore a brace while they were at work. I don't know what other treatment they were getting although I know one person had surgery. Need for surgery can often be avoided with correcting the situation which causes the problem, including appropriate exercises. If PMR or pred are involved at all I suspect it's only because both can cause muscle weakening.
Hi Plains, sorry to hear your news. I have CTS (see posts of 2,3 weeks ago). I wear wrist braces at night and occasionally during the day if necessary. Mine got steadily worse as I tapered down my Pred and my Doc suggested that I upped my dose to 10mg for three weeks to see if helped. It did/has and I'm now tapering back down again. If this doesn't work then surgery will be one of the options, although at the moment that is unlikely to be a very quick option.
Don’t have the shot. I also had carpel tunnel, common symptom with PMR. I had the shot… big mistake, it did absolutely nothing and the pain was worse. My carpel tunnel symptoms eventually disappeared when I reached about 5 or 4 mg.
I agree with everyone. I also had a carpal tunnel episode and was lucky to have this forum to realize not much makes a difference. People have even had surgery with no results. I had PT and never finished, as it wasn’t helping. However…one great thing that came from PT was the cold water hot water bath for your hands. google it…made a huge difference. I also started taking magnesium…..can’t remember what else, but I ended up taking D-magnesium-MK7-k-2-zinc-Methyl B-2. Still take that cocktail (from all the informed here!) Don’t know what helped…but it eventually went away. I had PMR for 2 years…off prednisone now for over 2 years. Good luck, there is light at the end of the tunnel (no pun intended! 😉🙄)
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I was told by a specialist that Carpel Tunnel is often part of PMR and I did have both my hands operated on years ago for this and both were successful ..xx
Yes, I have it, too. Was recommended to wear splints at night, & the symptoms are going away. There may be a pinned post on this subject, or an FAQ as it comes up regularly!
I saw an osteopath who gave me simple exercises to sort out shoulder and arm alignment.Worked like a dream and I still have the exercises for future use if necessary. I suspect the correlation between the two conditions has more to do with how we hold our shoulders when they are very painful from the PMR. If the CT troubled me at night I could sort it out by simply lying on my back and doing the exercises a few times without even getting out of bed. In earlier years I had suffered from gestational CT. It kicked off for me when I had PMR because I spent several days sanding our oak staircase prior to applying the finishing oil!
If still having pain overnight then you overshot the dose needed to manage the PMR. Also unless Dr tells you to stop splitting the dose, don’t because the sum of Pred in the body from split is greater than just taking the same single dose. I know that doesn’t make sense. I am curious what was the lowest dose taken when there was no pain? Also, were you experiencing pain throughout the day and evening? Normally that’s why they split the dose. Inflammation occurs mostly during times of inactivity (sitting, laying down, etc) and originally I’d get pain after sitting for more than 15min, thus a split dose. By the time I was at 10mg dose I had gone to a single dose (old split dose + 1mg) taken around 9pm to get me through the night. Once I got to 7mg I started pushing the time I took the Pred back until 9 am which is convenient. I’m now at 2.75mg and would be best to move it back to 2 AM. One thing I don’t understand and I read it a lot is why people drop their dose and stay there when they experience pain! If at a dose where there is no pain, and you drop and there is pain, go back to the previous dose! Stay there a few days and try again but use a smaller taper. For gawd sake don’t keep tapering. If doctor tells you to ask why and if they don’t budge find another doctor!
As to methotrexate it can take 2-4 months depending on the person to demonstrate whether it’s going to be effective. So, a bit early on that one.
As to Carpal Tunnel. Not only did I get it bad in both my hands (after 21 mos PMR + Pred) I had Carpal Tunnel Laparoscopic Release done). That was 7 months ago. My right had is great, my left I have issues of trigger finger in the mornings. Now was my CT due to PMR or repetitive motion or combo thereof? I think a combo. I spend a lot of time on my iphone and ipad, plus working on cars and stuff (fence repair, etc) around the house/farmette and I didn’t change my activity because PMR. I lowered the intensity and duration (took breaks) of my activity but still did everything I did prior.
My Carpal Tunnel started with tingling and numbness and soreness in my hands and arms in the morning. My GP first had me go to Vascular Surgery to have my circulation etc checked - OK. Then went to a Hand Surgeon who sent me to a Nerve Specialist that check signal conduction through my arm and hands. I had issues with signal latency and reduction in strength. Thus the Carpal Tunnel surgery. They didn’t send me back to followup on that aspect and I’ll wait until February 2022 to ask if that would be pertinent. My fingers in left hand are still mildly swollen, no pain, more so in morning. As I use my hand it becomes mild but still there.
Maybe some of the above is similar to what you are experiencing and will help. I’m the type where I read everything I can about my condition, what ever it may be, and if my doctor contradicts it I challenge him or her on it and if they can’t explain to my satisfaction the reasoning I push back, once I told my Rheumy that this is a partnership and unless he has had the disease he can’t know what I’m going through and we need to reach a reasonable compromise or else. He could tell I was pissed and he backed down and now we discuss. But also he knew I was well read as I bought in a couple of research papers I printed out and highlighted.
I can be a real AH if someone attempts to lie to me or not staying abreast of the diseases they are treating for and I don’t just take doctors at their word until their actions prove to me they really have their act together. I love my Gastroenterologist and Neurosurgeon and trust anything that comes out their mouth because both are very well versed. Not all doctors stay on top of current research and findings. Don’t be afraid to ask questions!
Thank you so much for your response. I started prednisone at 15mg. My pain went away. My doctor started to reduce it by 1MG a week. At 8Mg I had no pain during the day but I could not sleep due to arm pain. We decided to split my dose. It worked but I still experienced some pain while sleeping but once up and moving it felt much better, I should mention I take a hot shower each morning when I get up. I tried to go down to 7mg but had difficulty. Stayed at 8 mg another week and went down to 7 1/2mg. I was doing well, still some pain at times during the night. After 3 weeks of 71/2 I deduced to 7. Then 6 1/2, still splitting the dose, less am, more pm to get me though the night.
My pain started to increase and I thought it was my body just adjusting as I have read about. I really wanted to give my body the chance to respond. After three weeks of some pain at night, interrupting my sleep, I had a major flair at 2am. I took 3Mg of prednisone extra and went back to 8 Mg , 3Mg morning and 5mg at night. It seems to be working as far as sleep and pain.
What do you mean by “give your body a chance to respond.”? You dropped your dose, pain came back because your body responded with inflammation. PMR is an autoimmune disease. The Pred is countering the inflammation that’s caused as a result. Until or unless the disease subsides you’re going to need Pred. Pred has side effects, most can be managed. Maybe MTX will assist and allow a lower dose of Pred. But if you decrease the Pred and get pain that means the inflammation has returned. The higher the pain, the greater the inflammation you’re experiencing.
There are some excellent research papers posted on this site. Worth reading to have a full understanding of what’s happening.
Decreasing by 1mg per week is too much. The least time I’ve used is 4 weeks and usually it’s 5 weeks. Also I live in the US and here they tend to do the 4 wks at a dose then drop an amount and then do another 4 week. 24 hrs after the decrease I’d feel woozy for a day. I switched to DL simple taper (5 - 7 week, actually weeks 6 & 7 are just holding at current new dose if needed). IMO it’s far superior to the previous. No wooziness and fewer flares. Other than that I’d consider the DSNS. This is my week 5 of DL’s taper @ 2.75mg. If I get through this week with no issues next week will be week 1 @ 2.5mg. Meaning I’ll take 2.5mg on Sunday and Thursday and 2.75mg the other days. You’d have to look up DL’s Simple Taper to understand.
Morning again, I totally agree with Boss302Fan's comments regarding your speed of dropping your Pred dose, I'm not surprised you are yo yoing with that schedule. I think you need to think back to finding the dose you were on where the pain had gone, stay there for a couple of weeks and then start a slow taper (5-7 weeks) or one of the other long tapers, of no more than 10% at a time. If the pain returns stop tapering until it is under control. Continual yo yoing is likely to make it harder/longer to bring under cobtrol.
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