Thank you

[Birder21]

I have had PMR since May 2024 and just reduced by DL's 5 week taper to 7mg.

My 6 weekly f2f GP appointments (following blood tests) to date have been good, a different GP each time but all happy with my plan of reduction and pleased that I have be proactive in finding support and a better understanding of PMR from this forum and the charity. No pressure and prescriptions renewed each time.

Yesterday my check up was a phone call not f2f with my actual registered GP who I have never seen in over 12 years of being with this surgery. I said I had just tapered to 7mg and he decided that as I had been on 7mg for a month I needed to go to 6mg straight away - I put him straight and said this was my first full week of 7mg and that when I felt settled I would go down 0.5mg at a time. He then renewed my prescriptions and said that as I was not going to follow his advice there was no need for a follow up for another 6 months.

In the past I would never have questioned my GP but this forum has given me such a better understanding of PMR and that some GP's really don't know anything .... it gave me the strength to stick up for myself and manage this in my own way as I know my body and how it feels.

Thank you!!

[DorsetLady PMRGCAuk volunteer]

Well at least he didn’t get uppity and if not exactly overjoyed, he seems content to let you do it your way. Good on him for that. Fingers crossed things go according to plan for you.

[PMRpro Ambassador]

Brownie points for accepting your view, albeit reluctantly!!! But I think he needs to confer with his colleagues who sound much better doctors.

That's our aim, to empower patients to take some degree of control in the situation and do what works for them. Glad it is working for you.

[Supertech]

I had a similar appointment this week with my GP saying I am tapering too slowly. Think you have done very well to get to 7mg as I am on 6mg and was diagnosed in May 2023 so a year before you. He is going to request a rheumatology appointment which I don’t think is necessary. I tried to explain to him about the DSNS tapering which I am also following but he was not convinced. Mentioned about PMRGGA website and he did not think I should be looking at things on the internet even though he sent me a link to it when I was first diagnosed.

I appreciate all the help and guidance from everyone on this forum. It’s nice to know you are not alone.

[DorsetLady PMRGCAuk volunteer in reply to Supertech]

Mentioned about PMRGGA website and he did not think I should be looking at things on the internet even though he sent me a link to it when I was first diagnosed.

What! Perhaps you should tell him he can join [free of charge] and learn more about the charity and what it does, and how to treat your illness -send this link 😊

pmrgca.org.uk/professionals...

[jessiem in reply to DorsetLady]

When I was first diagnosed, my GP told me about Healthunlocked - so glad he did.

[PMRpro Ambassador in reply to Supertech]

Does he tell his diabetes patients not to look at DiabetesUK?

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Good point!

[herdysheep in reply to Supertech]

I wonder if someone has sent out a missive to surgeries. Mine has done the same thing lately - not the GP I usually have and not very receptive. I have managed to see the referral letter to rheumatology and it bears little resemblance to the discussion. In their view, tapering carefully is tantamount to refusing to come off steroids immediately. How I wish a high percentage of GP's experienced pmr first hand

[TandemTime]

"He is going to request a rheumatology appointment which I don’t think is necessary. ..."

I think I would take this appointment, since it's offered. By the time you actually get the appointment you may have queries etc. They may want to check a few things the GP may not have looked at .. You have proved you can stand up for yourself so nothing lost!

I have a new rule since all this... never refuse an offer of help.

[Supertech in reply to TandemTime]

Good point. I will definitely take the appointment when it arrives.

[Gimme]

It seems to me that some docs overlook the fact that even if you are tapering, if you still have PMR you are still going to need enough pred to control the level of inflammation that you are making. Crikey, I have been on 6 mg for a year and not been able to taper from there. Just coming up to my 2nd anniversary on pred. I've tried to get back to the 5 mg that I was on for most of the first year, but I just can't sustain it, so I am still on 6 mg. Luckily, the GP that I normally see for PMR related matters has a realistic approach on what is achievable. I've always suspected that he must have a close family member with PMR. I always have a problem when I see a different doc for something else and they realise that I am taking pred, then I have to go though the same old rigmarole, why am I taking it etc. I suppose that at least they are checking, because there have been so many instances in the past of people on long term meds that they didn't need, because their meds were never reviewed regularly.

[Charlie1boy in reply to Gimme]

Interesting point you raise there about your GP possibly having a relative with PMR. The GP who diagnosed my PMR had a mother with PMR, and diagnosed me in thirty seconds, or near enough!

She saw me through the first two months or so, then left me to get on with it. Thanks to this Forum, all went well - albeit super slowly.

[Orange_2022]

My GP 'ignores' me so the only appointments I've had were when I decided I needed a review or had issues that might be PMR or medication related. I find I get an appointment reasonably easily (we now have an online triage process). Hopefully if you feel you need reassurance before 6 months, that won't be an issue. Wishing you the best.

[Angelsmummy]

Good for you!Sometimes a gentle NO goes a long way with these people.Finally got my Rheumy and dr on board with what I am going to do.Soon as I told both of them that I am a member of the pMR/ GCA charity,group. and that I have expert help regarding tapering,flares etc,I think they realised that The lady was not for turning.!!Best of luck to you Birder21.xx💐😜