I was dx with PMR 3 weeks ago, started on 40 mg. prednisone and having a quick remarkable recovery, feel great, no pain, lots of energy, functioning well! I have developed hand cramps, also foot and ankle cramps occasionally, and wondering if anyone else has experienced this? I have had some trouble sleeping, also a cut on my hand a week ago still has not healed, bruising. My MD is cutting my red down to 30 on Dec. 1. I hope it isn't too large of a cut because I do feel so well. What do you experienced patients think? Elijo
Interested that your initial dose is so high. Did your doctor suspect GCA as well?
I started at 30 with the same results as you. I was reduced to 25 within a week and then down by 5 mg over a couple of weeks until I reached 15 mg at this point I stayed for a month and then started reduction by 1 mg a week until I reached 10 mg. I stayed at 10 for several months and then reduction by 0.5 mg using the dead slow method Am at present at 4.5 after 18 months. Male 75.
Hit the moderator!! 30 for 1 week then down to 25 for a couple of weeks the 20 etc. and then to 15. At this point I started reduction by 1 mg until I reached 10 mg reducing roughly by one week. At 10 mg started reduction by 1 mg and then 0.5 mg using the dead slow method. I't best not to reduce by more that 10%. Dead Slow method:
My reductions are VERY slow. I use the following pattern to reduce each 1mg:
1 day new dose, 6 days old dose
1 day new dose, 5 days old dose
1 day new dose, 4 days old dose
1 day new dose, 3 days old dose
1 day new dose, 2 days old dose
1 day new dose, 1 day old dose
1 day old dose, 2 days new dose
1 day old dose, 3 days new dose
1 day old dose, 4 days new dose
1 day old dose, 5 days new dose
1 day old dose, 6 days new dose
Best of luck - John male 75
A lot more info here https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
No, and he seems to feel that I probably won't get GCA since I'm being treated with the prednisone! Hope he's right! The dose does seem a little higher than some take, but as you can readily relate, I am SO GLAD to get me life back! Elijo
Hi Oregonjohn, You muist keep very accurate records to keep that amazing schedule. good for you. How long have you had PMR? Elijo
I have hand and toe cramping. Every once in a while my thumb will retreat into the palm of my hand without pain. It is wierd. It will not open on its own. So I pull it out gently and hold it out for a few moments and it is fine. That also happens to my toes when I am in bed, but I generally do nothing for them but wait patiently and try not to tense up.
Hi Elijo
I have been working on PMR reduction with prednisone and methotrexate for almost 2 years and after several ‘flares’ I have continued my ‘slow’ taper from 20 mg pred using a 5-10% dose reduction of the medication 1-2 monthly over that period.
Generally the prednisone kept pain and aches in my thigh, shoulder, hip and shoulder girdles to a bearable background level that has allowed me to keep the taper going at that rate.
But – one big issue that really bothered me was my HANDS. The pain in the hands was not like carpel tunnel –but in all joints of both hands from the wrist to the furthest finger joint.
With my regular prednisone dose, I did improve slightly toward the evening but the pain was never gone to a reasonable level each day.
I decided to make a slight increase of 2mg prednisone for a 2 month period to see if it would improve or to try to determine if it was something else that was causing the hand pain. The increase did work and then I continued with an even slower taper 0.5 mg for 2-3 months and it has maintained a low bearable level of discomfort. And I’m currently at 4mg prednisone.
So I guess that HANDS are PMR related and the degree of ache and pain can be very different from the other joint zones of the body.
Hope yours improves.
Dave
Hi Dave, Thanx so much for your comments. I'll keep that info on you dosage in the back of my mind when mky dose gets lowered from 40 Mg. I do play classical piano and the hands can be a problem, but I playi for my my husband and my own pleasure, so do NOT have to perform!!! Keep the comments coming! Elijo
i have been on prednisone for over 4 years at low doses (5-10 mg). i get cramps often on my arms and legs and feet, dont know what its due to.
I get foot cramps, can't bear weight (as in bedding) on my feet at night. But had this issue before pred, before pmr. The physiotherapist suggested it is due to tension in the foot caused by deformities (bunions from wearing shoes too small when I was growing). It's like the bones are all being pulled out of joint. Relieved by intense massage of the tightened muscles or ligaments. Yes, I've also noticed slower healing of small abrasions, cuts, etc
Most if not all of us who are following this Dead Slow and Nearly Stop method keep track on a calendar or in a diary!
18 months. Present at 4.5 mg and still fine.
It is great to be able to move without pain! Be careful not to overdo it, though. Some of us do, and it sets us back a bit.
First of all, if you have PMR then 40mg is a very high starting dose - 15-20mg is regarded generally as enough and avoids some of the problems. That is almost certainly why you aren't sleeping and the healing thing could also be due to that - although some people don't have a problem, it is a quite individual thing. Bruising is due to the tiny blood vessels being made more fragile. It also leads to an excess of energy - so when you do cut down don't overdo things or you will have PMR symptoms again. The pred deals with the inflammation but your muscles remain intolerant of acute exercise - you have to learn to pace and rest appropriately to do your part of the management alongside the pred.
I too had cramps in hands and feet with PMR - however, if you didn't have them before it could be the pred as it makes you lose more magnesium and other things through the kidneys. One thing to try might be a magnesium supplement - just because the blood level is OK doesn't mean there isn't enough in the muscles so taking a supplement at the normal RDA could help. It is the first thing doctors here in mainland Europe try for patients with muscle cramps. If that doesn't work as the simple answer they then look at other reasons.
I did develop cramping in hands, feet and ankles shortly after starting on Pred. A few months down the track I still get them, but not as frequently or severly. I do take magnesium and drink more water and have learned how to relax and try and ignore them. As pred goes down I hope the cramps will totally disappear.
Dear Elijo. Slow down. Be kind to yourdelf. I was diagnosed with GCA some moons ago and they then found I also had PMR I was on 60mg of prednisone, I felt great so much energy, trouble was I was heading for a fall but no-one told me what would happen. When you start to reduce the dose you then feel you can't cope and you soon run out of energy become lathagic and depressed. If you want to get over this and it's going to take a long time, take it easy. Rest often, be kind to yourself, have a mid-day nap, try not to do to much. Wish some-one had told me before I wore myself out and got so depressed. please take note of my warning you will find that things will be easier for you Good luck xx
Truer words were never spoken. I have been scolded for doing too much, but in fact I have become very good at pacing myself since that original couple of months when I (mistakenly) believed I was cured and only needed to safely taper off prednisone to be my old self again. A rest between activities is a definite requirement, as is focusing more on one's own needs.
I did go through the 'Superwoman' period initially too - crashed and blamed myself for overdoing it and have continued to blame myself sometimes for not pacing myself. Six weeks ago i broke an ankle and so I really did have to slow down. I havn't felt any better tho for taking it easy. Then again, the fall and broken bone probably upset my whole body - ? Be kind to yourself regardless