I had a telephone consultation with my rheumatologist on Thursday and got quite a shock when she discharged me.
I’m still on prednisolone (3 mg) and get flairs at times. She said I could talk to the GP if I had any problems! I’m still Struggling with polymyalgia and assume it’s because they have a backlog of patients due to the lockdown.
This Rheumatologist has always been available for phone calls if I have a flair And I’m feeling rather devastated.
I assume it’s due to the pressure on the NHS, but I feel I need to be under a rheumatologist for advice and guidance. At the end of the conversation she said I’d probably be on prednisolone for life which wasn’t very encouraging.
I’ve had this condition for six years and I hope to 1 day be able to stop the steroids.
Wondering if anybody else has had this thrust upon them?
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Bobbikins
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As you say, I may be down to pressure on the system, but to be honest a GP is quite capable of dealing with PMR.
If you are having flares, maybe you should consider using a slower taper such as this link (others are available) - healthunlocked.com/pmrgcauk...
- and maybe reducing only 0.5mg a time.
You MAY be on Pred for life, but you may not be - it sounds as if you have reached, or gone below what you actually need at the moment - doesn't mean you won't get to zero someday.
However, your issue could well be your adrenals glands not working properly yet - has anyone suggested a Synacthen Test to check if they are capable of working?
Most people with PMR in the UK never get to see a rheumatologist. From what you say you sound to have gone below the dose you need - which is possibly why you are having flares. Once you establish the lowest dose that gives the same result as the starting dose did then you stop trying to force a reduction - all that does is cause trouble.
Prof Dasgupta keeps many of his patients at 2-3 mg for a long time, life if necessary, as that seems to avoid relapses/flares. And in the long run it probably has you taking less pred than yoyoing the dose - which soon makes it harder to reduce at all.
You were very lucky to be able to contact your rheumatologist for on going advice. 75% of people with PMR never see a rheumatologist at all, the rest normally see them if their situation is abnormal. What is wrong with asking your GP for help and guidance? A lot of GPs are as good as, if not better than a lot of rheumies.
What others have said. I have had two telephone consultations with a rheumatologist and I will not be surprised if I am dischanged back to my GP next time. I wouldn't be particularly worried as I suspect that my GP knows as much as my rheumy - actually I suspect that that is not much but - whatever, so long as my GP will follow the advice I am getting here and pass to him I will be happy.
Everybody has said it all. Try not to feel devastated, this is not unusual and you will be just fine. Some GPs need to be brought up to speed and you can do that. Mine is an expert now. The low dose Pred indefinitely, is not an unusual or bad idea. They do have a massive backlog. There is always this clever forum.
When I got to 2/1mg my rheumy released me. With the help of this site & a good GP you don’t need a rheumy- well I didn’t. It was a hassle getting off work to go too. Hang in there.
Hi Bobbikins. I understand your feeling that way but try not to worry about it - it is not unusual. My brilliant rheumatologist, Dr Rod Hughes, told me last time I saw him that he didn’t think I needed to see him again (after 4 years with him) and I should consult my GP from now on, unless I really needed him. I was a little surprised and felt a bit lost to begin with, but I trust his judgement and I have managed (after trial and error) to find the one GP in my practice who understands PMR and will consult with him if I need him. I echo the advice of others - it sounds as if you have gone too low on your Pred for this stage of your PMR. I have just got to 4.5 mg doing a very slow taper after 4 years and a few ups and downs when trying to go too fast. I will now stay on this for a few months before seeing if I can reduce to 4 mg. The slower the better - I have learned the hard way. Take heart that you are not alone and will always have this wonderful forum to advise you. ❤️ Xx
I was diagnosed Easter 2017 and saw the GP only twice at that time. Went on pred 15mg. Refused all other meds - the number they tried to put me on was scandalous imho. Never saw a rheumy.
I read a lot on this forum, which is so informative (who Needs GPs when we have this amazing facility!) and learned a lot on the web. Managed the condition myself with diet and supplements. Came off pred in March 2019 without GP knowing...have never looked back ........haven't seen the GP about PMR since . Did have to see the GP to get a referral for an x-ray in December 2018 when I thought I had probably broken my hip. I had!, although GP didn't think I had as I'd been walking around for a week and continued teaching. Had 3 screws put in with just a spinal block (sensation and audio was a bit like being a victim of my husband's DIY!) Had Covid 19 in March at home - no GP input - and have lived to tell the tale.
Sorry if I sound a bit gung ho, but I happen to believe that too many pharmaceutical drugs are, by and large, not a good thing. My way is not for everyone though and is probably not endorsed by many people here. They do say that doctors make dreadful patients, I am not a doctor, but the daughter of a neurologist, so maybe it's hereditary!!!!
To sum up - total time spent with GP for PMR< 15 mins..... for broken hip < 10 mins; orthpaedic surgeon < 1 hour; getting three screws put in - that was surreal - the anaesthetist put on the Archers for me in theatre because I'd missed the previous evening's episode reclining in outpatients, waiting for a bed. My recipe for life? Treat it with humour and remember that the medical profession falls far short of having all the answers - any medic worth their weight will happily admit to that - so be prepared to jump up and down a bit and ask questions.
Try not to worry about not seeing the rheumatologist - think positive and tot up how many hours of your life you will save not having to travel and sit in a waiting room!!
btw I'm 65, still teaching, started church bell ringing last year, took up playing the cello, making cheese and curing meat ......... thinking of maybe retiring so I can lead a fuller life- the only restricting factor being a lack of bawbies.
Hi. I’m going through a flare at the moment after trying to get from 10mg to 9mg. I’ve had three phone consultations with a GP and increased pred to 14, then 15, then 18 over about three weeks with barely any effect. Two days ago another GP in the practice suggested 20 which I’m trying now. I’ve asked to be referred to a rheumatologist, which they did, as I haven’t seen one for two and a half years and don’t feel like I’m getting anywhere. I found out yesterday from the Rheumatology Dept that the earliest Appt is four months. The GP says this seems to be par for the course and nothing they can do will expedite it. I pointed out what the NICE guidelines say which seem to suggest I should see a Rheumatologist but that didn’t cut any ice.
So I seem to be in the hands of my well , meaning, and distant GPs casting around in the dark. In these circumstances the advice of all you folk out there is ever more important. Thank you.
If it's any consolation, quite a few GP's seem to have a better handle on PMR than a Rheumatologist. And your GP (at least here in Australia) can send you for all the same tests (ie bloods and bone scans) that a Rheumatologist can.
I think seeing a Rheum in the initial stages can be quite useful, but once you and your GP get a handle on your condition and treatment, the Rheum can just be an expense you don't need.
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