I have received a letter from rheuamtology who says that we can manage your symptoms in general practice and they do not routinely need to see these cases unless they are not responding appropriately to the steroids, which you are.
We will therefore continue monitoring as per the guidance for polymyalgia rheumatica in practice. This wil involved gradually reducing the steroids as per guidance.
Should there be concerns we can contact rheumatology for advice.
Thanks, Kiren Shabir
Calder View Surgery
How to get out of this 😖
Written by
Ronzy
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That must be very frustrating and disappointing to hear..... yet another ill informed GP who is clearly not up to speed on this condition.
Remember that you are in charge of what you agree to do, and your GP should be working with you and not making decisions on your behalf without fully discussing them with you too.
Hopefully you may be able to change GP to one you can work with.
But in any case, I note the phrase “This will involve gradually reducing the steroids as per guidance.” I think what you need to know is what guidance your GP will be using. If it is a slow and flexible taper that takes into account how you feel, that just may be okay.
If possible I’d suggest a face to face appointment to thrash out exactly what the GP means.
Actually could you see the specialist nurse, I wonder? I think the GP would still have to do the actual prescribing, but if she gets on well with the nurse, that might work for you? Not sure how it works at your surgery….
Maybe that’s another question for the GP?
Also I think you need to make it clear that you’re needing to take at least 22.5 mg at the moment. That should be taken into account when deciding on the tapering plan.
The patient is the only person who can effectively adjust their own dosage to a minimum without incurring flare-ups of symptoms, so hopefully you will be provided with enough pills to meet periodic changes in your actual dosage requirement.
I've always had to adjust my dosage seasonally as required, otherwise only a higher dosage would achieve relief year-round.
Prescribed tapering of dosage very often leaves the patient with flaring of symptoms, so enough pills must be on hand to meet one's ever-changing dosage requirement.
I've been at zero prednisone dosage for eight weeks now, so am left only with making periodic slight (1-2lbs) reductions in my body weight as my only control in response to recurring pmr symptoms.
My rheumatologist confirmed to me that what I had read about fasting being effective at blunting the body's inflammatory and allergic reactions was true.
Meters it out exactly then says I’ll ring in 30 days. I can see a battle Must stick to my guns , think I will probably say I’ll try but if problem I will adjust, see what she says then. Probably say 🤷
I think some doctors and rheumatologist do not get to grips with what we are going through.
One of the rheumatologist I spoke to a few months ago regarding shoulder and neck pain totally dismissed my symptoms telling me it was osteoarthritis. I tolerated the pain for a few weeks and then phoned rheumatologist again, this time I got a totally different approach, the doc sent me for loads of test and then arranged to see my rheumatologist (Prof Luqmani), he is so understanding, he told me I’m probably having mini breakthroughs trying to rear it’s head and then calming down again, he told me that I do not have to reduce pred and to stay on the dose I’m on, possibly for another 3 years, possibly if I’m ok, I can try to reduce in six months but only by a quarter at a time.
Try and phone your rheumatologist dept and get an appt with them.
Um…I haven’t actually seen a Rheumy for myPMR. I was referred when I started inflammatory arthritis, but we didn’t discuss PMR. Once diagnosed, the main item is tapering, for me, & flaring, unless there are other issues, which are often unrelated. Yes, there are side effects from steroids, but if you read all the posts, as I try to do, then taper is the main concern, & DL has a great slow taper…& there is so much about tapering on this site…why not print off the slow taper, ask for a face to face meeting & ask if your doctor agrees with it. 22.5 seems a very high dose when you’ve had PMR quite a long time!! I should write down a list of what happens when you try to reduce to 20, & go & see your doctor. I’ve never really understood the need for a rheumy myself, for them this disease is not complex, it’s handled by taking steroids, & the patient can handle the taper, together with guidance from a GP. Be constructive, & pleasant, go through your list of medical problems & try & get a face to face meeting…that’s my ‘thoughts for today’s problem’, Ronzy! Good luck!
Just had a look, I see you’ve had PMR for 3 years now (well, you joined this forum nearly 3 years ago!) From what I read, it’s not normal to need to be on 25 to start with, but to need 25 after 3 years??! Yikes! Perhaps there’s something else wrong, or is it because you’ve had Covid, maybe? Another question for your GP, perhaps?
To be fair it's the consultant who seems to be passing the buck back to a GP who isn't fully aware of what you are going through. The letter you received isn't helpful in the least. I really feel for you. Sadly this is one of the conditions that has to be experienced in order for anyone else to understand the pain level that you are experiencing. My heart goes out to you. xx
Is there any chance of you taking somebody with you at your next appointment with your GP, preferably a family member and/or somebody who knows about your health? Write down the points you've made here and take the paper with you so you can refer to it. Maybe ask for somebody else within the surgery to be present. You're 83 and deserve some respect - asking if you can open a door sounds pretty condescending to me. Good Luck!
I’m ok really for my age. Just not firm inough at times but I have made notes to get into my head. Regarding door. She seams to think shoulders should be almost crippled 😱Thanks for concern and help
The opening a door question is a quite reasonable assessment. I could open a door with a lever handle - but not if it was a knob. I got stuck in the bathroom in the house we'd just moved to temporarily - the house we'd just sold had everything designed for me including drawers in the kitchen instead of cupboards.
I agree. Even on pred, I have been unable to turn the Yale key in the lock on my front door. I bought a little wing adaptor a few months ago that gives more leverage and works wonders for me x
I can still manage the key in the lock - but they are keen to put a fingerprint recognition lock on the main door here and maybe that does make sense. You still need to take the door key with you = it won't work if the electric goes off!!!
When he suggests dropping steroids bring in the term ‘shared decision making’—you are meant to involved in your care. They can recommend what they think you should do and what the guidelines may be, but it’s your condition and you know what levels you need to function normally. You may not ‘fit’ into his views, but that’s ok. As long as he has documented that he has discussed with you about the guidelines, but you can not manage on lower dose. It’s all about person-centred care. I do this as part of my day job. I hope that helps.
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