I took some great advice from these knowledgeable contributors about splitting up my 15mg prednisone dose. I changed from 15mg at 8:00 am to 10mg at 3:00 am and 5mg at 8:00 am. I go to the gym everyday and exercise with a modified workout for about an hour almost pain free. The rest of the day is some chores around the house and now I’ve included a short afternoon nap. I do notice that at about 9-10 pm I feel a little stiffness starting back in my left hand. When I take the 2:00 am 10mg dos the stiffness is getting a little worse in the left hand and starting in the right hand. Luckily by the time I wake up at 6:30 am the stiffness is getting better and after the gym it’s not effecting my daily routine . My question is about the stiffness only in my hands. The hips, shoulders, thighs , and groin are not stiff and painful. So am I about at the right med spacing or need more Prednisone , or a little discomfort is acceptable if it’s relatively mild ?
Still a little weakness in one hand / fingers - PMRGCAuk
Still a little weakness in one hand / fingers
Your progress sounds great...you've done it by analyzing your meds and the way your body feels. I don't pretend to know about dosages and timing but one or more of our trust experts will be on soon. My best💞
Just wondering whether hand/wrist is carpal tunnel syndrome -it is associated with PMR - but not usually noticeable at higher doses. So maybe have a a look at this- and just monitor it.
Bcol has information on CTS - so I’ve tagged him
Scheduled an appointment with a hand Dr next week. I try to get ahead of these problems before they become acute and cause unrepairable damage. Thank you .
Like DL I would wonder about CTS. But if it is just the PMR starting up as the pred wears off - have you tried taking the 8am 5mg dose a bit later? The idea of splitting the dose is to take the second part late enough to extend the antiinflammatory effect to the next dose. I usually suggest early morning for the main part and the second lot at lunchtime.
And it is OK as long as it remains stable and isn't getting worse
I’m hoping it’s not my work out exacerbating the situation. I do specific free weight hand rolls to strengthen my grip. Been doing that for a few years now. Hope the Hand Dr will have some good suggestions or therapy for for it. Thanks
I think you will find that that isn't helping and it might be worth resting the grip work until the pain resolves.
Sadly unless your hand doctor has an understanding of PMR he may not be much help. In the build up to diagnosis of my own PMR I had several steroid injections in my thumbs and investigations into carpal tunnel syndrome. I also suffered with hip pain from horse riding and had changed my sport to carriage driving. Those problems disappeared once I started the steroid and stayed away while I was on the right dose of pred. Now at much lower doses and several years later some of those pains have returned with a vengeance.
If your hands are already reminding you that they are in pain regardless of the 15mg of pred I would say you need to take notice of them and not disguise the pain with other other pain relief, just cut back on the grip strengthening exercises. You don’t need a hand doctor to tell you what own body is already telling you.
I must say that the first week on prednisone that almost all my pain was gone. The return to exercise so quickly might have been premature as you say. Luckily I was cautious about overdoing it from years of experience in the gym with muscle pain from overextension. My anxiety from the weeks of debilitating pain and Stiffness maybe clouded my judgement somewhat and hopefully this will be a minor setback . You are right about the steroid injections being his first treatment option. About a year ago I went to him for transient thumb pain and he offered a shot that day after the x-ray showed a very small bone spur.
Luckily I was cautious about overdoing it from years of experience in the gym with muscle pain from overextension
You may have thought you were being cautious, but PMR affected muscles are a whole new ball game … and you have to give them time to recover.
With all due respect you may have years of experience of exercise and using the gym.. but you don’t have years of experience with PMR - those on here do… 😊
You’re right , in this game I haven’t even sat on the bench yet.
Good man…😊
Hi, it sounds as if you are still challenging your body with your gym activities and I’m wondering if you are gripping things during your workout, like weights or handles. PMR is very unsympathetic to exercise and you may find that aches and pains elsewhere will return as you taper the dose.
That’s going to be a real problem for me as I have a problem deviating from the usual routine. The craziest thing is I didn’t connect the increasing pain and stiffness to PMR. I thought it was just overdoing it sometimes. The fact the all of a sudden I could barely get out of bed one day took me completely by surprise. I still can’t believe how disabling this is without the prednisone. 2 months ago I was going to gym 5 days a week and waking 3 miles every other night. Everyone said I was in pretty good shape. At 74 I accepted the aches and pains as all part of it, but this is beyond anything I was expecting health wise.
It’s a real shock when you have led a healthy active life and suddenly find you can’t turn over in bed or climb the stairs. The Pred is a magic pill but not a cure and we have all had to learn how to manage our lives with it .
I hope your doctor has been honest with you about life changes and realistic expectations as you titrate the dose of pred to manage the pain and maintain your quality of life. Sadly there is often some pain somewhere but should be at least 70% better than before the pred.
Because my diagnosis was by my GP I haven’t been able to get an appointment with a rheumatologist until Feb 25. The GP is using standard treatment of 15 mg a day for 30 days and a blood test at the 30 day point for ESR/CRP levels. Any knowledge I have about PMR is from the internet, and this website so far. I’m hoping that I can learn to manage this well enough to tapper down to 5mg and maintain 70% pain relief for the next few years. Remission seems to be quite a ways off reading what experienced people with PMR are saying. Thank you for sharing your experience every bit of information helps.
The 70% is the expected rapid global improvement in response to an adequate atarting dose - not what you should be looking for longer term. WIth appropriate lifestyle changes and the right dose, many patients are pain-free or close too.
There are two levels of remission: medication induced remission while waiting for remission in terms of the underlying autoimmune disorder that causes the inflammation that underlies the symptoms. That may take anything from 2 years and up to happen but for 95% of patients it DOES happen.
That’s great news to hear. When I had open heart surgery there was 95 % survival rate at 5 years and 85 % at 10. I’m at 14 years now and my heart issues are negligible according to my cardiologist so those odds are very encouraging. Thanks again.
Just occurred to me - are you doing your exercises with your hands EVERY day? When you have PMR and are on pred then you need a rest day on alternate days to allow any DOMS (delayed onset muscle soreness) to resolve. It happens in response to far less exercise than you have been used to and takes much longer to resolve - rest is as important as the exercises. If you overdo it and don't allow recovery time you can end up with long lasting muscle pain because healing never has a chance to take place. And if you REALLY overdo it - the soreness can become permanent. You have a new normal now - past experience no longer counts the same.
Again thanks for your insight. Every other day should be a baseline to work from. Exercise has always helped with so many issues in my life it’s hard o realize that it could be detrimental to a health condition. I have so much to learn about this.
Everyone does - you aren't alone!
Gee I had a lot of wrist pain with PMR and assumed it was part of the condition. I took the 15 my every morning and never split it up and my wrist pain got worse during the day. I just reduced activities that required repeated wrist movement and that helped . Once the PMR went into remission my wrist pain disappeared. Not sure if this is much help but just my experience. All the best ,
Mewy
Every reply is extremely helpful thank you.
Gatorchief, I don't split my dose. I take my whole 8 mg around 4 a.m. This helps me feel less stiff when I get up around 8-9 am.Your over use of your hand gripping may be the problem. When I over use mind, that is the only time I get hand and finger cramps. I painted my sunroom last week and over did it. That gave me hand cramps the next day but then felt better. Sounds like you could be overusing them working out at the gym. Seal49
I will refrain from that exercise for a few days and see how that affects my hands. Certainly worth a try.
I’d give it longer than a few days, I’d recommend at least a week. I was a regular gym goer until PMR hit 19 months ago and have only recently started doing the Joe Wicks Bodycoach workouts. As I’ve tapered my PMR pain is still managed but the arthritis which it masked at higher doses has very much made itself felt. Arthritis in both thumb joints means press ups, mountain climbers etc are painful and sometimes impossible and I can only lift 8kg dumbbells because of my arthritis whereas I used to kettle bell swing 20k two years ago. We have to realise despite always being fit that we have to compromise as we get older. I’m 72 and still work 3 shifts a week in a care home.
Sounds like you’ve been navigating this for almost two yrs and still managing to stay with it. I work out with gym pacs vice free weights now, no more free weights. 22 k is the max and I haven’t had any issues with my shoulder, arm or legs so far. My main focus is on my cardio workout. After open heart surgery my heart condition is now more susceptible to arrhythmias as I age and prednisone can effect those also in what I have read. I’ve been walking a mile a day since starting prednisone hoping one day to get back on the elliptical trainer. I know it’s probably a long ways down the road yet, but it’s a goal I’m hoping for.
Hi, apologies I seemed to have missed this one somehow. My first thoughts, think PMRpro has already suggested it, is to remove/sideline other things before going down the CTS route. I would be tempted, hard though it may be, to stop all the gym and other exercises you do with your hands for at least a week, maybe two and see if that helps to resolve the problem. If it is CTS then I would expect more than just short term stiffness.
My appointment with the Hand specialist is in 5 days. I will cease all hand exercise and use them as minimally as I can to look for reduction in pain before the appointment. Thank you .
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