Hello Everyone

[MrsPractical]

Pleased to find this site, as I feel I have been left on this Polymyalgia Rheumatica journey to find my own way with minimal information and help provided by my GP. I thought I would have regular checks/ blood tests to keep an eye on my progress but have had no further blood tests and it is almost a year since first diagnosis.

[PMRpro Ambassador]

Hi and welcome. Stick with us and you will learn more about PMR and its management that most GPs ever know!

[Koalajane]

You will get so much fantastic information here and there are local groups that meet up and can help.

You have tapered quite fast so hope you are doing okay.

Good luck in your journey.

[Nanny71]

Hi My Gp is much the same . I phone up and request a blood test every 2 months .🌺

[MrsPractical in reply to Nanny71]

Hi Nanny 71

How lucky you are. I asked for tests after 6 months and was told it’s not necessary. Instead they tested blood pressure and put me on more tablets!

[PMRpro Ambassador in reply to MrsPractical]

It IS necessary - there are various things they need to monitor including blood sugar trends with Hba1c. It is neglect to say they are unnecessary. They should also be monitoring BP and weight. I suppose the trouble is - bloods, BP and weight all need f2f appointments ...

[MrsPractical in reply to PMRpro]

I did have bloods checked under NHS healthy woman check and those were ok but none for my PMR.

Was seen by a nurse.

[PMRpro Ambassador in reply to MrsPractical]

Which is daft - many of the things appear on the lab result as they are done in parallel but only what is requested is reported.

[Jackoh]

welcome! You’ll get a lot of useful information on here. 💐

[Blackcat1M]

Hello MrsPratical you have indeed found a brilliant site for PMR.

The information and support you will get here is unbelievable.

I don’t know what I would have done without the support of the people here who have been kind and supportive.

Good luck on your journey with PMR🌼

[Daffodilia]

GP says no need test if on steroids as affects results better to go by how you feel

[MrsPractical in reply to Daffodilia]

ok thanks

[Suffererc]

😂🤣😂🤣😂 they don’t know much about the subject 😊

[Miserere]

Your GP practice sounds about as good as mine. No checks at all - I check my own BP every month or so. No blood tests this year but will request one in a month or so - no guarantee that they will do any. When they did no-one informed me I was pre-diabetic even though it showed clearly ...

A good diet, low in sugar and carbohydrate and a look at Dr Sarah Myhill's site for information re diet etc. should help a bit. I get most of my information from the wonderful people on this site - I would have been lost without them, so welcome! You've come to the right place.

[Davidj16 in reply to Miserere]

Any decent GP would have referred you all to a rheumatologist immediately upon diagnosis! I suggest you demand it

[DorsetLady PMRGCAuk volunteer in reply to Davidj16]

That doesn’t always happen in UK - and very often if the PMR is straightforward it isn’t necessary. A decent GP can manage it.

Ideally the patient SHOULD see a Rheumy at least once, but it can take a long time.

Different countries/ different protocols.

[PMRpro Ambassador in reply to Davidj16]

"Any decent GP would have referred you all to a rheumatologist immediately upon diagnosis"

Why? Probably 3/4 of PMR patients are managed long term by a GP who is accessible (relatively speaking). If a referral takes months - what is the point really if the GP is doing a reasonable job. The specialist can't actually offer much extra for the average patient. If things go pear-shaped that is a different matter. Rheumies think every patient should se a specialist - but they don't make it easy. They complain about patients having been started on pred - but having spent years undiagnosed, I can tell you that isn't pleasant either. And the 2 specialists I saw didn't get it right either.

And don't tell me it wouldn't happen in the USA - we know many patients wait months for rheumy appointments, if they can find one at all. Only in the USA most PCPs seem unwilling to manage patients ongoing - at least in the UK they do

[Predsharer]

Quite apart from anything else, being left by our GP’s to just get on with it on our own, leaves us feeling very isolated. PMR is such an isolating condition and to get no local support exacerbates this feeling. It really feels like no-one cares. The NHS has lost it’s way, it responds well to acute situations but chronic problems fall under the radar. It’s such false economy, because if people like us don’t receive a caring service we just end up in acute services. A couple of days ago I spent a morning at A&E (covid and chest pain) where I observed the staff to be worn out, demoralised and desensitised. They lacked empathy and were abrupt and unsympathetic. They don’t want to operate in this way, but the system is broken and the NHS has just become a ‘mopping up’ service. Many GP’s in this area are doing private work and the receptionists are having to tell lies to the patients about why their GP is never there. Like so many things just now, no-one is looking at the root cause and how to fix it. This forum is what keeps most of us afloat, but we deserve more from our local services.

[MrsPractical]

Totally agree.

[Tarym]

Same for me, just over 2 years down the line. Given diagnosis, medication and left to get on with it, no blood tests since then. Had to arrange a bone density scan privately as he wouldn’t consent to one. All my knowledge has come from this excellent forum. I did make an appointment to talk PMR with him in May, waste of time, disinterested barely describes his attitude. Fortunately I’ve had no serious problems beyond the Pred side effects and have had a general health check with the nurse this year. At least he continues to prescribe Pred as and when I need it.

[Rugger]

The first GP I saw, 6 years ago at diagnosis, said I didn't need any blood tests for at least 6 months (Also he didn't talk about bone health or other effects of pred.) I needed to see a different GP about another issue, who asked me about monitoring the PMR - bloods for inflammation, blood sugar etc. She said it was unacceptable for her colleague to leave me that long. After that I was monitored regularly, with blood tests, prescription of calcium and vitamin D, DEXA scan etc. This was all pre-Covid, but that is no excuse to have neglected you and left you to "find your own way". 🌻

[PMRpro Ambassador in reply to Rugger]

I have heard of doctors who have been disciplined for not monitoring pred patients properly

[Rugger in reply to PMRpro]

The first GP is still at our Practice but I NEVER see him and I'm not alone in that!

[PMRpro Ambassador in reply to Rugger]

We had one a bit like that in Durham - he was a knowledgeable doctor but hopeless in terms of people skills. He had his uses though - quite liked it if the patient knew exactly what they wanted/needed so we would see him when we needed a prescription or had a pretty good idea what the problem was - you never waited long for an appointment! And when he discovered we both worked at the hospital - totally different persona appeared. Which improved even further when he found out we had a flat here. He used to come just up the valley here every summer to do the Via Ferrata!

[Miserere in reply to Rugger]

We only have the one GP in our practice - heaven knows what the others are doing.

[MrsPractical]

hi again everyone having read through many of the posts on here and taken in advice, I decided to take the bull by the horns and try to contact my doctor. I am currently on 3 mg of Prednisolone and I have started to feel fatigue and a certain amount of pain and stiffness in my back and legs. I was beginning to think I was possibly having a flare but having read advice on here, I’m now thinking it it Prednisolone withdrawal and overdoing things, however it has made me cautious about reducing dosage. Doctor agreed I can go to 8 weeks before dropping by 1 mg instead of 6 week programme I was working on before so I am happy to give that a try. She wouldn’t agree to the next drop being by 1/2 mg because that’s not within the guidelines. I’ll see how I go. Want to avoid a flare at all costs so am now pacing myself more carefully. Thanks everyone for sharing your journeys.

[DorsetLady PMRGCAuk volunteer in reply to MrsPractical]

“She wouldn’t agree to the next drop being by 1/2 mg because that’s not within the guidelines.”…

That’s a bit pedantic when you are on such a low dose… but heigh ho..

You could always try 1/2mg for first 4 weeks, then the other half for the next 4…

Still get same result at end of 8 weeks, but may be easier for you.

There’s more than one way to achieve her aim 🤔

[MrsPractical in reply to DorsetLady]

That sounds like a plan. Thanks I’ll see how I go.

[PMRpro Ambassador in reply to MrsPractical]

To quote- "Guidelines are ONLY guidelines". What a really daft comment! The guidelines also say that tapers must be adapted for the individual person. And endocrinologists recomened any step down should be as close a possible to 10% of the current dose - not 33% ...

And I agree with DL!

[MrsPractical in reply to PMRpro]

thank you