At last I've found a gp who listens & is helpful, knew more about pmr than the other one who told me to massage myself with almond oil!!! Anyway had to see new gp for my knee which is still painful, he's booked me immediately for xray, certain it the old osteoarthritis having a bit of a flare up, but while I was there he went through all my blood test results & explained every one. The rheumy at hospital booked a dexa scan which I had in July & from June when I first saw her she gave me alendronic acid. When gp checked my dexa result there is absolutely nothing wrong with bone & there is absolutely no need for me to take AA. You would have thought that the rheumy would have informed me, I don't see her till end of November, so I could have taken another 4 months of AA when no need. Also gp said the fast reduction given me by rheumy is way way too fast. I am now on 17mg pred, gp wants me to stay at least 3 weeks on that, rheumy would have me on 12.5 now as that's the timetable for pmr apparently! Anyway sorry for rambling long post again, but just wanted to say if you have a dexa scan it may be worth checking the result yourself to see if you need continue AA. We're taking enough meds as it is, one less is good. Best wishes to all & thanks for all the helpful info.When first diagnosed I put my whole trust in rheumy & followed her instructions to the letter, not knowing any better of course. She has been wrong on so many levels. Oh and by the way, when she gave me those huge fast reductions from 40mg to 10mg, I said what do I do if pain come back, she said take painkillers!
Alendronic acid & DEXA scan: At last I've found a... - PMRGCAuk
I know rheumatology is a broad field but PMR is one of the most common complaints, . so why don't they know more about it? They are perscribing dangerous medicines and don't seem to understand how they work. How can they call themselves experts?
I would expect the odd mistake but this seems to be endemic and world wide!
Hi scats, some of them it seems from what I read, just seem so blinkered. When I queried the huge fast pred drops (on phone with rheumy nurse, as appts to see the actual rheumy are rarer than hens teeth, the nurse just goes and asks rheumy then gets back to you), they just said that's how the reduction plan is. So I blindly followed 40 down to 10 in a ridiculously short time as per her instructions, only to find myself trying to do 10 & feeling so bad I rang helpline again & was told go back to 20 then & then they proceeded to give me exactly the same reducing plan as before!!! Thank goodness I joined this forum, have managed to get to 17 at moment. Best wishes.
It appears that there are more experts here.
I had one appointment with rheumy. GP thought I needed ZA infusion. I was not examined, no tests were taken he just said yes I could have the drug. Not that I needed it, how would he know?
When I got out a piece of paper with questions on he bristled visably and when asked about tapering he waved a graph at me, too far away to read.
I have activly avoided any attempt GP has made to refer me since.
That's awful isn't it. I felt so confused & lost. As you say much more help & experts here. People actually suffering this horrid thing, which is utterly different to the rheumy's timetable, that treatment is 18 months & that's it. Oh that it was that simple, when you query anything they look at you like you're mad.
"certain it the old osteoarthritis having a bit of a flare up"
Have you tried Flexiseq if not, go to this site: versusarthritis.org/about-a... - this is the
ARC research website.
Since it came on the market and I tried it it works brilliantly for me - no pain and no more inflammation.
The other thing we found, as you have to wait 10 minutes for it to sink in - you don't wash your hands. Another lady, who had given up knitting because of osteo in the fingers, suddenly realised they were more flexible and pain free and she was able to knit once again and the first thing was bootees for a great grandchild. I can now type easier as well,
The best way I can describe it, is that it works like WD40, the little microscopic balls get between the bones sort of like a penetrating oil, think WD40. The best thing is that it not a drug.
It is not available on prescription but you can buy direct from the ARC shop, which means any profit goes into their continuing research programme. One tube will tell you if it is going to help you.
Hi. Thank you so much for the reply & info, I will definitely try some. Looking online now.😃
I do so hope it works fine for you.
I could not believe the difference when I tried the first tube. Since then I have told all the support group meetings I have attended and more and more people are finding it helps. So far only two or three have said it did not work for them.
Ordered & be here tomorrow 😃. Thanks again.
Let us know how you get on with it.
Follow the instructions to the letter and remember to sit for that 10 minutes.
Hi jinasc, thanks for the info about the flexiseq for the OA. Have been using it as per instructions and leg is much better, not hobbling around house with the walking stick, just using that when out just to be on safe side. Nice not to be in so much pain. So glad I found this site, so much helpful information from everyone. Thanks again.
I am so pleased you are getting some relief. I still carry my folding walking stick in my handbag.
Hope you remember to put it on at night before you get to bed. I tried just using it in the morning but found getting out of bed when I did not use it was not at all a good idea. I know it is expensive but the fact that it it just your index finger length is a plus side.
The best thing I like about it - bio-mechanical so not another drug to swallow.
Yes totally agree, don't want yet another tablet to take for sure. Yes putting it on twice a day , think will continue with it for a while even though the pain is much reduced. How long did you use it for?
Coming up to 6 years, it disappears within a few hours, no residue. Think of oil you have to keep putting in locks etc and when cooking it disappears as well.
If you go to the Arthritis Research versusarthritis.org/about-a... you can read up on it.
Even after reading it, I still did not understand, what I do understand it works for me and for others that I know.
It really doesn’t inspire confidence does it. Thank goodness you have a gd GP
Your GP joins our roll of honour! 🥇
I am amazed at your doctor. If she is saying take painkillers when reducing, what does she think the pred is doing for you?
I guess she doesn't deviate from the "18 months treatment" plan. If pain comes back after that, take painkillers. Now I am so much better informed from here, when I see her I think I will ask if that is how it works then, I may as well just have stayed on the painkillers in the first place, that was the reason I was referred as I was in so much pain & living on them! I can only presume if you don't fit the 18 months regime, tough luck then, it obviously didnt work for you. I'm fast getting to the point when I really don't see the point in going back to hospital, not sure if one can do that. One question I have here again is that when I'm in the rheumy's outpatients waiting area, it's always packed, but lots seem to be called to the 'flare clinic'. don't know what section of rheumatology that may be for, do they have that for pmr? I've never been offered anything else than a phone call back from nurses if I was having problems, even when I was dreadful dropping to 10 & was desperate, I thought they would have said come in for check, but it was 'just go to your gp.
You are in the UK? If you have a good and willing GP they can continue your ongoing care - which basically means "keep providing the pills..."
The "flare clinic" is probably an RA flare clinic - where they assess and hand out pred to get the flare under control until the DMARD that is the main treatment takes over again or is replaced with the next on the list. PMR seems to be beneath their radar, it isn't "real" rheumatology.
Yea I'm in uk. Thank you yet again for your helpful & informative answers. I cat tell you how much it is appreciated.
Often PMR patients in the UK don't ever see a rheumatologist - providing there isn't much doubt about the diagnosis and symptoms respond to a moderate dose of pred and reducing goes sensibly there is no real need. If there are problems, the symptoms need a lot of pred to manage, if there is any suspicion of GCA, if reduction gets stuck at a high level then maybe a rheumy might help. But as you have seen - maybe they won't.
I did see a rheumy, he wanted it to be anything but PMR, but gave me 6 weeks of pred as I was off to the US for a meeting. 15mg pred achieved a miracle in under 6 hours and when I stopped after 6 weeks I was worse than before in less than 6 hours. Proof conclusive many doctors would agree. But at the follow-up appointment I wasn't seen by him but by a GP doing his stint in outpatients - who hadn't a clue. It was a re-run of the first appointment - a total waste of my and his time. I left knowing I would never go back to him - and another GP in the practice who DID know about PMR was my go-to. Then I moved here to Italy - and now have a rheumy who knows what he's doing and appreciates that, as far as I'm concerned, so do I!
I too am going to make my first port of call the new gp I saw couple days ago, (not new as in he new there, he's been there years ,but I, had not seen him before) who turned the computer screen round to show me & explain all the blood tests, xray results & checked through all my medication with me. Such a difference! He didn't make any comment when I mention previous gp & massage yourself with almond oil!😤 Of course everyone wants to see him out of the 4 or so doctors at the practice and its quite difficult to get an appt,(now I know why). There is always a longer wait in waiting room as he is so thorough , but no one minds the waiting.
Exactly - the system here is no appointments, turn up and wait. And she takes the amount of time you need - even if that is 3/4 hour. If it needs longer she'd probably give you an appointment out of surgery hours. But since that applies for everyone - no-one complains.
Can he provide a booked-ahead follow-up appointment - because he sounds worth it.
That is so good! Obviously your first GP and rheumatologist belong together!!!
Treatment for 18 months for a disorder with a median duration of just under 6 years and afterwards you can die in a corner with pain and depression! And if you have pain take useless NSAIDs - when pred is the pain killer in PMR...
And they are paid a healthy salary to tell us this rubbish!!!
No disrespect to the good un's out there in rhummy world. It does seem a hit & miss experience for most on here! All a mystery & master plan!! Not many options either! Hey Ho!....... Bit of cheer for myself! Leeds 0 ....Blues...2. Only for the moment though!!!
You crack me up every time!
Thank you do much for your post. I have been advised by my group to ask for a bone scan. I hadn't even considered that I might need one. The doc automatically prescribed Allendronic Acid because I was being put on steroids and would need to protect my bones.
I must learn to research everything thoroughly before accepting the so-called 'professional advice.
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