I wanted to shout from the rooftops , June time I believe. My final dose of Pred, after dropping from 30 mg through to 1 mg every other day. I had already been berated from my Rumi, for once before upping my dosage when I started to get stiff wrists , and unable to use a pair of scissors. I ended up having a steroid injection. He told me categorically, that this had nothing to do with the PMR, and he wanted me off of Pred. It was at the time of stopping again, that I started to get trigger finger symptoms, a nd I believe I wrote about this.. I was in the Caribbean and the heat made no difference to my sore fingers. As time has moved on , several knuckles on my hands have become extremely painful, and my body has stiffened. My Dr sent me for a scan, and it came back as OA. He commented no wonder you are in pain.
So why am I writing? As it has grown colder the pains in my hands have increased, and simple things such as tying my shoelaces , holding a carving knife etc, have caused me grief. Basically I can no longer make a fist in either hand., and the pains in my knuckles is sometimes excruciating.
Last night I relented and took a 1 mg tablet. Although not perfect, my pains have reduced. Should I continue with a low dosage.? Thing is , these pains never became noticeable until I stopped taking Pred. Were these being masked all the time I was taking?
All the time I hit the lower doses , I was functioning well. I swam , cycled etc. Although I still can, gripping the handle bars isn’t so easy when cycling .
Final question, IF I was to continue taking a low dosage ,and my pains subside, is it so bad to continue with Pred, despite my Rumi , and it appears other Rumis desires to get their patients off of Pred full stop.
I look forward to hearing some positive feedback.
kind regards
Paul.
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Stifffingers
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As many know 1mg -even 0.5mg can make a huge difference - and after finishing Pred as you did it can take months for the small amount of inflammation that your PMR may have been producing build up again.
Certainly higher doses mask other pains (and sometimes even a small amount) such as OA -but I would say current pains are probably a combination of both.
Just as a matter of interest have you tried other pain killers or flexiseq for your OA?
You might need to do a bit of experimenting to ascertain what pain it actually is, but for now if 1mg Pred helps then maybe continue… but longer term term you do need to know exactly what is causing your pain.
My Rumi , was / is a very nice personable man. Like everything since Covid , appointments are few and far between. They are also now/ were just telephone conversations. I can go and see him privately of course.
My Dr,s are very good all young and helpful.
I have not tried the product you sent a link to, but will give it a go. I have been making a pure Tumeric drink daily., along with various vitamins.
I remember when first getting diagnosed, I was warned off of getting massages.
Because I had ( believed) I was finished with Pred., had one the other day, my body reacted like crazy. It was a deep tissue, nevertheless, it kind of told me that my fingers were not an isolated issue.
Massages are fine PROVIDING you realise they are quite likely to cause a flare when the therapist works on trigger points and releases the accumulated inflammatory substances there that cause the pain. I look forward to my therapeutic massages and mobilisation done by my lovely physiotherapist who, like everyone here, is very "up" in their knowledge of PMR. Drinking lots of water afterwards and gentle exercise outside helps speed up washing out the nasties.
If it were me in your position, given the tremendous difference that 1mg is making I would have a real in depth discussion with any GP who is amenable. I would experiment a bit beforehand though - try 1mg on alternate days and see if that works for example. There are people who remain pain free on at little as 1/2mg on alternate days but zero is a step too far. Any doctor who objects to someone taking that little to remain pain-free needs some questions asked IMHO,
I would say that if you need even 1mg a day to achieve freedom from pain - that is preferable to downing painkillers of any sort. But that is my opinion - though I do know of rheumies who agree that even a couple of mg is fine. At that level it shouldn't be causing any immunity problems - I don't seem to catch things at 10mg and above!
Most trigger points are at attachments of tendons and ligaments between muscles and bones. Some of them coincide with acupuncture points and some coincide with the famous fibromyalgia trigger points. I think it causes confusion - I am quite sure there are fibro cases that are really PMR, lots of overlaps. They are the spots a good physio or rheumy can press and you scream ...
I have the same thing. now that my dose is lower.. down to 1 or .5 some of the time...my hands hurt like crazy. cannot even move them in the morning but then run hot water over them and massage them and they move. But I do believe that all my aches and. pains are arthritis that was there before PMR and will be there after PMR. I think the prednisone masked a lot of my OA pain which was lovely but if I can I would still choose to go off the prednisone eventually because of my bones which are osteoporotic. But if tylenol (whatever it is called in UK) paracetamol I think... doesnt help then maybe it is still PMR. Keep on moving those aching hands and fingers I too had trigger finger which deep massage at the base of the finger helps and also look on YouTube for hand exercises for OA they do help a lot!! Good luck!!! and keep us posted as to any results and decisions I will be very interested!
I am using my powers of observation to guess you are called Bonnie and do Yoga.!
Ok , we seem to be on the same page. I, to get relieve from hot water, and when I’m in the shower I try to press my hands against the tiles to create movement. Have to be honest , and say I don’t really take paracetamol for the pain.Maybe I should? I will certainly try Dorset ladies recommendations of Flexi….., as the reviews are very good. Currently smothered my fingers and wrists with Voltorol . Seems to be helping ….. or maybe that’s the Pred?…
Going to take another 1 mg later today, to see how I’m fairing. ? Certainly feel more comfortable in myself.
”going to take another mg today”…would be careful of using Pred as if it’s a pain med. As others have said, there are more targeted options for OA that may help better. I also have trigger finger (isn’t that painful!) and a few simple stretching exercises daily has worked well for me. Topicals (I use Peace Cream) work well for the OA in my thumbs.
Basically they are the strong version and the aches and pains version - I think you probably need to trial the strong version or you might think it isn't working when really it is the wrong one. You can try the weaker one later.
I started off on the other one, but after 6 months moved to Max and it was knees only then the rest came along...........although my hands were a lot better as I used to rub the residue all over the my hands.
There was only one strength when I first used it the Max came along later and it made a difference.
Hi there, are you in London? I have an excellent reflexologist who also massages. She has two PMR clients so knows how much pressure to apply and where to massage. She’s the only person I’ll let massage me. I can DM you her details. Hope your pain is manageable today.
I agree with the others , remaining on 1 mg of Pred , at least until after Christmas when you could get an appointment and further advice about getting treatment for the OA seems safe enough and sensible enough to do .It is highly likely that the low dose steroids were still helping to improve the OA and inflammation that can occur with it , especially in cold weather . Of course , if you are not feeling a return of PMR symptoms and your symptoms are all classic OA pain and mobility problems there will be other alternatives for you to try for treatment which aren't steroid based and recommended for OA.
Your Rheumy needs to start addressing the new unwelcome visitor at your door not just pushing for you to come off the steroids without replacing it with the treatment you need for the OA at the same time . It is unlikely that anyone with severe OA symptoms in the hands and fingers could cope with no appropriate treatment if those symptoms are obviously getting worse.
Do you take any other pain killer like Paracetamol at the moment as well?
If not , it might be worth trying , alongside the use of Flexiseq cream and maybe the additional warmth of good fitting arthritis gloves.
You could arrange an appointment to discuss what you are considering with the GP in the meantime , and they may actually recommend that you start another treatment that may not have been open to you on high steroid doses but could be included now .
When you get to speak to your Rheumy you can then at least say you continued your steroid because the GP also agreed to it , and request for them to start to actively recommend medical treatments to improve the OA .
Thanks for sharing your story, I am experiencing sore hands and also tapering slowly lower with Pred so very interested in the suggestions. This forum is so helpful and I am so grateful to all the people who contribute.
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