PMR for since May 2014. Had flare-mainly right hand-May 2015. Found forum and realized I reduced too quickly. Found relief at 30mg. Now at 8.5 using the DS tapering. Everything has been great. Was on 2 days of 8mg , then to take 8.5 for next several days. Pain came on within a few hours. Severe pain in right hand and some pain in right hip. Leave to go scuba diving in two days. Should I go up to 10 or higher. For how long?
This forum has been an absolute God send for me. Thank you so much to all who have contributed.
Roberta, I can't comment precisely on your prednisone regimen, but I did want to share a concern about scuba diving. For me, changes in atmospheric pressure have led to my worst flares. I find it particularly difficult after flying, so I have been very reluctant to go diving. Something to ponder. Strongly recommend you take a reasonably shallow dive day one and see how you fare (vs flare)
I found that using the dead slow nearly stop method it worked better if you do 1 day new dose then 6 days old dose, then 1 day new dose and 5 days old dose, 1 day new dose then 4 days old dose and so on. So there is a more gradual reduction and you don't take 2 consecutive days of the dose for some time. I know that I would flare if I did that.
As as to what to do now, hopefully Eileen or another of our more experienced PMRers will advise you better than me. I would probably go back to 10 mg, hopefully for a short time, just enough to soak up the inflammation and then carefully start to reduce again. How long at 10mg? First does it remove the pain? Possibly just a few days then try 9mg. I'd probably ask on here... Good luck!
I on the other hand can't comment on the scuba diving - but I will look at the PMR/pred question!
Are they absolutely sure about the PMR? Or, perhaps more of interest at the present - are these really "PMR flares"?
A flare that was "mainly right hand" or this one that is "right hand and right hip" is not typical of PMR. PMR tends to be bilateral, maybe not evenly so but is rarely so unilateral that the patient says right or left. Nor does it often come on in hours, it tends to creep up.
I would ask my doctor to consider if maybe this could be palindromic arthritis. This is characterised by apparently random attacks in joints which can appear and disappear in hours or days. It is often a precursor of rheumatoid arthritis and (presumably) LORA. It is an inflammatory arthritis - pred will help a flare. Like Late onset RA it can appear very like PMR - and of course there is always a chance you are being greedy and have both! No reason why not.
What to do about your pred I can't really say - if 10mg makes it better then fair enough to get on your trip. But Daniel's comment needs consideration too - one of the boring aspects of any chronic illness is that we may have to give up things dear to our heart. With a very heavy heart, I've given up skiing. I live at the bottom of a ski slope in a ski resort - it is hard to ignore.
But do ask your doctor about "Is this REALLY PMR?" Or it could be something else - like myofascial pain syndrome that is trapping nerves and causing referred pain. But it is less likely that it affects joints.
More on this. My pain has migrated into my hands,and after a year believing this to be PMR, my rheumatologist is questioning whether this is truly PMR or possibly RA masked as PMR. I am a rower and obviously there is a lot of stress in the hands, and while I have not been rowing hard, it is still exercise and places stress on the hands. Told him I felt as though I had been redirected to purgatory.
Your comment that your flares are in your hands raises a yellow flag for me.
I have had pmr for 18 months and have had to give up looking after my farm biking and skiing. Also over this period i have had many episodes of pain in various places. All the pain was bilateral in shoulders hips back legs groin feet and hands. I found as soon as you mention hands and feet the dr thinks LORA. So i guess they are still not sure if its PMR or both. As far as your hands Daniel when i first went back to some of the farm duties and my office job my hands were extremely painfull. It was very much like carpal tunal syndrome. I wore fairly sturdy compression gloves and they helped alot. Eventually it went away. Moderation is the key aspect for any activity so go easy on the diving. Joanne
Hi Roberta
The one thing that has not only increased my mobility is water and swimming/ diving. The only thing i can't do diving is caring my BCD let alone tank for i can feel it pull my muscles so my husband carries my BCD and the dive crew set me up and pull me out or i take my BCD off in the water and they haul it up. Under water your weightless so to speak, enjoy.
Water keeps me sane.
The Leeds, UK group did a study and showed that PMR does affect feet and hands - but I think it tends to be at the beginning as it is tendonitis and synovitis and once you are on the right dose of pred it slowly eases - certainly did for me. It will be noticable if you do a lot with your hands but tends to settle again if you rest them. I was told my hand pain was OA (no it's not) and the foot pain was fairly much ignored - it felt as if I was walking with bound feet like Chinese babies had, and on sharp pebbles and broken glass. It took about 6 months on pred at above 10mg to fade, but it did and has never returned.
I would agree with you about the feet and hands at the beginning although the pain as you describe is coming back on my right foot. Thankfully, it does not have the feeling of walking on pebbles which it did before diagnosis. Interestingly, it affected my left foot more prior to starting steroids. It feels like a Mortons neuroma at present but I think the higher dose steroids helped and I am only feeling it again as I reduce. I'm on my second week of slow reduction to 8.5 and feeling great. Fingers crossed it continues.
I had terrible pains in my toe that crippled me walking and it was my podiatrist that pushed for further diagnosis and not OA which the GP'S first thought i had pre PMR diagnosis.
I had the return of this on my last drop but not as severe as well as pains in my hands but i get this if i overdo anything with my hands and mainly with my right since I'm right handed.
Hi Roberta, I was reducing nicely until I found myself almost unable to move in bed and desperate pain down one leg. Up went P from 5 to 7.5 initially, little improvement and now back to 10. I am wondering whether it is the hot weather - I live in west of Ireland - and we have had 2 weeks over 20 degress. (very unusual here). Anyway I can always reduce the P after a while. It was the first time in a year that I had made it down to 5! Also on methotrexate and humira.
Definitely not used to this weather Helen. I'm on the south coast (Co. Waterford) but I shan't be complaining. :-) Personally I find the "normal" damp cool weather upsets me more although getting out and doing more in this nice weather has its effects as well. Good luck getting back down to 5mg. I've just got down to 12.5.
Ron
I feel the heat is helping the PMR and am so much better but that may be because it is getting better anyway.
I wasn't actually suggesting that the heat was the cause of my changes but it is the only different factor I can identify at this point. Whenever I flare it usually signifies some change in something - that is the only variable I can identify at the moment.
Loving the fact I can sit outside and enjoyu fresh air!
Let's hope it's the latter.
Tracking differences the only variable recently has been the weather and I really hope it is not a factor in my flare as I enjoy siiting out in it. of Course, it may be the shock to my system of seeing sun for two weeks......
Thank you, that's what I am hoping.
I find sitting out in the sun too draining but I like to sit out for my evening meal. I do go in and out of the sun so that I can benefit from the vitamin D. As you say, it may be the shock of seeing the sun for 2 weeks.
I sit out for coffee first thing, and then tea in the evening.......
"over 20 degrees"... pffft.
You lot don't know what 'heat' is!!!
Start complaining when you get over 40*C for a week!
LOLOL