I saw my lovely GP last week and we talked about my problems in a really kind manner.
I said that I am in pain and aching too often these days. Paracetomol doesn't help :/
I have been on a taper from 7mg - 6mg and in achy town all the time.
I told him, again, that the Rheumy ( I have seen about 10 or more since being diagnosed) has been pushing me to taper down to 0 or thereabouts. I'm not coping too well on 6mg so my GP said would I try taking 6mg one day then 7mg the other day? It really sounded like a good idea and I have been doing this for a few days.
My Doctor also prescribed me Alendronic Acid once a week and ran me through the pluses and minuses. I said yes and am waiting until tomorrow morning to pop one.
Thing is at 10.40 am I'm seeing yet another Rheumy and am wondering how that will go.....
I did say to my Doctor that " I'm 73 this year and can't keep this tapering agony up. I don't mind trying anything different"
So here we go again and if anyone has any advice feel free to fire away!
Happy week to you all
David
pst! I have been gently wandering around our lovely neighbourhood but still feel in pain.
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discoballs
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You should have enough steroids to keep the pain reasonably at bay. It does sound as if you are on too low a level from what you say. I personally would not take Alendronic Acid unless it was proved I had osteoporisis. Have you had a Dexascan to show that your bone density shows osteoporosis? If not, I would recommend you get a scan first.
Personally I’m not a great fan of the alternate day reduction, but if it works for you then carry on… and the only way to get adrenals working is a very slow taper…
If you have a competent and sensible GP - you don't necessarily need a rheumy unless you are on a drug that needs their say-so like methotrexate, leflunomide or tocilizumab.
hi, I was prescribed Alendronic acid when diagnosed with PMR. Previously diagnosed with osteopenia and have been taking accrete for 5 years. GP told me it was essential I take Alendronic acid. I did as I was told but soon ran into trouble with oesophageal burn! Agony! Immediately advised to stop taking the AA. Had dexa scan and bone density is as it should be now for my age….i didn’t need the AA!!
I’m of the opinion that it’s best not to take Alendronic acid until Dexa scan has been done.
I saw my GP recently and he was concerned that I am not taking a bisphosphonate to protect my bones, which I am reluctant to start on for all the usual reasons. I had thought that bisphosphonates were mentioned in NICE guidelines for management of PMR and that is what they were following, but I have just looked and there is no mention now. The web page is Feb 2024, so I wondered if it was updated recently, or maybe I misremembered or misunderstood. Anyway, I have appt for my DXA scan next Sunday, so I will find out then if I need them.
They were mentioned - but for over 65s and those with dodgy dexascans I thought. Because so many of us are over 60 when diagnosed there seemed/seems to be an assumption that we are all on the verge of osteoporosis and MUST need them.
Just had a discussion with one of the rehab rheumies here - been friends for years. He reckons oral bisphosphonates are no real problem for dental stuff. The annual infusions are implicated BUT pretty much ONLY in their use in oncology where they are used at much higher annual doses and it is in association with the underlying cancer disease process. Which is what I'd decided in my research for my own infusion a few weeks ago.
It does sound like your Pred dose has dropped too low and if so, as the inflammation builds back up, your symptoms are likely to get worse. My doc suggested AA but I asked for a DEXA scan which came back absolutely fine so AA was never mentioned again. The doc books me in for one every two years, so far all good. Never had a Rheumy but do have excellent doctors.
I'm back. Lovely gentleman Rheumatologist. I had my steroid injection for Plantar F. He recommended I reduce steroids the same way as my GP And he said up them if I felt bad. I had a Dexa scan three years ago (he looked it up) and it was fine.
I was advised by my GP to take AA when I was first diagnosed with PMR but resisted as I wanted a DEXA scan first to see if I needed it. Was told that I would have to have been on Prednisolone for 3mths before I would be able to have one on NHS and by that time the pred may have caused my bones to weaken. Nevertheless, I held out only to find out that when I was eligible to be referred there was a 5 month waiting list. I then had a private scan as couldn’t wait that long and horror of horrors found that my spinal score showed serious osteoporosis……-5. It also showed that I had suffered a spinal fracture in one of the vertebrae. After having a bit of a meltdown I thought back to an incident 8 months before I was diagnosed with PMR when I stupidly tried to lift something, a sheep actually, and felt something in my back “go” and was in so much pain for several months. So to cut a long story short I most probably already had osteoporosis before I even started taking Prednisolone. I think a lot of GPs follow a guideline of prescribing Prednisolone, a PPI and AA when they diagnose PMR here in UK.
That is what drives us to push for dexascans - there are many who are told pred caused their low bone density when in fact it was already present pre-pred and equally many who have good bone density even after taking pred. I was told to take AA 15 years ago when I first got pred. I actually took my first justified dose a few weeks ago after there was evidence of a compression fracture of a vertebra - I have no pain due to it at all.
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