Not per but arthritis so I'm told
Posted , 10 users are following.
Long time since I wrote but have been watching. Had bone marrow biopsy showed nothing, have been reducing steroids at 1 a month but have been in pain all the time, neck,shoulders and hips. Have been given gababentin and oramorph for pain but neither seem to make a difference. Referral now to pain clinic but when who knows. Next Rheumatologist appointment not til May so have been left to get on with it. Any help from this knowledgeable site would be appreciated. I wish you all a Happy New Year.
0 likes, 15 replies
Anhaga kathleen21605
Posted
Why do they say it isn't PMR? I would have thought arthritis, at least osteoarthritis, would respond to other painkillers. Did pred ever make most if not all of the pain go away?
Hope you get some answers soon.
kathleen21605 Anhaga
Posted
The reason they gave me was that I only had pain one side so wasn't PMR. I was on 15 to start and I thought it was miracle cure but because they want me off I am now reducing at1 a month currently on 5 but 1 st of month down to 4. As much as I wanted to come off the drug I feel that was the only thing that made some pain bearable. My last blood test was 18 and 4. Seeing Dr on7th so will say gababentin doesn't do anything.Not taken the oramorph yet as I sleep enough on the other drugs.Just have to put up with it I suppose. Next Consultant app are in 4mths and6 mths.
EileenH kathleen21605
Posted
It may not be bilateral in the early stages. But one cause of unilateral symptoms that can resemble PMR is myofascial pain syndrome and that will also often respond to pred. Whatever it is - if you had a miracle with 15mg pred it is something inflammatory and gabapentin is unlikely to do anything. And just because your blood markers aren't high doesn't mean it isn't inflammatory - my normal is in low single figures but when my ESR hovered at 16-18 for several weeks suring a major flare no-one even twitched because it is still "in normal range". Wasn't in MY normal range though.
kathleen21605 EileenH
Posted
thank you for reply it did relieve pain when first on 15 mg that was August2017 since then had 2 rheumy visits didn't achieve much. She sent me for shoulder scan that showed inflammation. Also had c t scan that was ok. I was told I had severe osteoarthritis not p m r . Now been referred to pain clinic though when who knows. Thank you again I do appreciate all the info I get.
ptolemy kathleen21605
Posted
PMR tends not to respond to any painkillers, pred seems to be the only thing. As Anhaga says if it were arthritis a lot of painkillers would help. I suppose your GP would not try a week of pred just to see if it helps?
BettyE kathleen21605
Posted
What was your starting dose of Pred. and did it relieve the pain at all? If it didn't then PMR doesn't look very likely. On the other hand, I found one of the bonuses of Pred. was that it relieved the pain of my OA almost completely.
At some stage in my reduction, which took five years, my GP began to wonder whether what we thought were flares of PMR pain when I got to lower doses might, in fact, be the OA pain . So at one point, he asked me to tolerate the pain for a couple of weeks and try to exist on my very low Pred. supplemented by Paracetamol. It did nothing for the pain and caused very worrying liver readings so we went back to a higher Pred. dose and stopped the P. Liver returned to normal and the higher Pred. allowed me to resume my reductions ant a comfortable rate.
It does seem a bit perverse to rule out PMR when you are suffering what look like typical symptoms, I must say. Hope you soon get a sensible answer.
BettyE kathleen21605
Posted
Sorry, I wrote this before reading your second post. I know others have said that pain is not invariably bi- lateral. It certainly would be convenient if symptoms always followed the rules, so to speak but they don't.
kathleen21605 BettyE
Posted
I believe more of what I read on here than all the Drs I have seen. Thank you for your help it gives me more ammunition when I see the Dr next.
Michdonn kathleen21605
Posted
Kathleen, if you read the available literature on the web site you will be more update with what is going on with PMR than most Rheumy. My Rheumy has stopped question my decision or at least we talk about them. At first it was her way or no way! Most Rheumy don't focus on PMR as we must! Good luck stay positive. 🙂
kathleen21605 Michdonn
Posted
Thank you for your reply I will remember that. I don't think she knew much about it as first it was to taper 1every 3mths now it's 1monthly. Unfortunately I don't see her for 6mths she's on maternity leave no one to take over. now have to rely on Drs.
Anhaga kathleen21605
Posted
The lower your dose the slower you have to taper. The recommendation is by no more than 10% at a time. You can see that below 10 mg this becomes a problem, which is why several slow reduction methods have been devised by patients in order to ease the steroid withdrawal effects and also make it possible to determine what the lowest maintenance dose should be to prevent build up of inflammation again.
Michdonn kathleen21605
Posted
Kathleen, as others have said Prednisone reliefs PMR pain, nothing else does. You need enough Pred to knock the inflammation down. It just controls the inflammation it does not cure PMR, so far nothing does! I was on 7 mg had a flare and had to take 30 mg to get relief. I also had to fight my Rheumy all the way. I am currently on 5mg, and holding do to other issue, I hurt myself. Good luck on the rest of your journey, try to stay positive and smile 😉
kathleen21605 Michdonn
Posted
I am currently on 5 and have a lot of pain in neck shoulders and lower back and hips. Was told its osteoarthritis Not p m r even though I did get relief on the higher dose of pred. I now take gababentin that doesn't seem to do anything but make me sleepy, also been given oramorph though I'm loathe to taking morphine. Seeing a new Dr on 7th so maybe will get a bit more help.Thank you for your help.
ptolemy kathleen21605
Posted
It sounds as if you are just on too low a dose of pred as it worked so well for you to start with. Have you tried increasing by 5mg and see if that helps, if it does you can decrease pretty quickly to get down to the right dose.
Anhaga kathleen21605
Posted
You may have osteoarthritis, I do, confirmed by x-rays. It has never made me crippled the way PMR did. There's nothing in the rule book which says you can't have more than one condition. If pred helped at the beginning and other things are not working as you reduce your dose, it does look like you have an ailment which is not straightforward OA. Maybe it is PMR, maybe one of the other things which have to be ruled out before a diagnosis of PMR is made. Having a bone marrow biopsy suggests to me that the doctors have done a pretty thorough investigation so why they are reluctant to treat it as PMR is puzzling. They are obviously not reluctant to prescribe very heavy duty pain killers, even though you find them ineffective, whereas the low dose of pred required to manage PMR comes with relatively few side effects and is really the only thing available to deal with the inflammation and pain of PMR.