Rare as hens teeth

[Dorsetgirl17]

I had a phone call from my Doctor’s surgery asking would I make an appointment to have a face to face appointment with her about my PMR. After scraping myself off the floor in surprise saw her yesterday. Only have had one telephone conversation at the beginning of this nearly 3 year journey so have been self medicating. This Forum has been a blessing to compare notes with and helpful input, so many thanks to all. Down to 2mgs at moment most of her patients are stuck on 5mgs. Had flare last Christmas went back up to 5 from 2 and been doing the Dorset Lady’s suggested slow taper since (thanks Sue). Gave her a copy of the PMR/GCA magazine she not heard of it.

[123-go]

Well done with reaching 2mg with input from this forum alone. Astonishing that your GP has had no involvement in your care!

[borednow in reply to 123-go]

Hmmm. My GP diagnosed PMR in 2017 and since then the subject has never been raised again. At least he does provide repeat prescriptions when asked.

[123-go in reply to borednow]

Unbelievable! Do you at least have regular blood tests requested by your GP.What a good thing you found this community!

Seems to me that there is some dereliction of duty on the part of a professional who should be managing your care but, as often mentioned here, many GPs have little knowledge of PMR.

[borednow in reply to 123-go]

No, no blood tests either. And our village has just received an open letter in our local magazine telling us that we can all see a GP whenever we want and they are all there for us!! That's created quite a stir I can tell you.

[PMRpro Ambassador in reply to borednow]

Is there now a queue at the door?

[borednow in reply to PMRpro]

No but there is talk of a revolution.

[Suffererc in reply to borednow]

😂🤣😂🤣😂🤣😂 all book appointments

[123-go in reply to borednow]

Unbelievable x 2!

[Dorsetgirl17 in reply to 123-go]

I do have regular blood tests, every 3 months, but there again it is something I request through the receptionist. Registered with E-Consult so able to read the result. There again, I request what Pred I need and am able to collect from chemist. So very self-service like most things these days!

[Suffererc in reply to 123-go]

We all find great support here that they should be giving us. BUT they hate being told ‘on the net’

[PMRpro Ambassador]

Excellent - and educating her too!

[DorsetLady PMRGCAuk volunteer]

Better late than never….🌸

[Booklist]

Same for me. I was diagnosed with PMR over the phone last December and started on 20mg Pred. I have now tapered to 10 mg and have never seen a Dr. I have had problems recently with getting a prescription for Pred, and this week was down to my last dose. I was prepared to sit it out at the surgery but in the end it wasn't necessary. I now have lots of tablets but am having to recover from the stress of it all.

[Tapestry1057]

The more I read about doctors input with PMR it seems that many of us have had no help from our GPs although I know that some of you have been lucky with their GP. I have been left to my own devices for over 3 years and the help and advice I’ve had from many people on this forum has been invaluable. I just don’t know where I would have been without you all.

[Suffererc]

I see my GP quite often and phone calls but all she bangs on about is getting of Pred. She says she has lots of patients with PMR but never days if they are having problems getting off Pred.My repeat prescription for Pred was halved without telling me. I am waiting now for another repeat which I asked for 9 days ago and see it hasn’t been signed yet. Beginning to think I am not going to be given any

[PMRpro Ambassador in reply to Suffererc]

Which is medical negligence and thoroughly unprofessional. Long term steroid patients must not be deprived of their pred. Their ignorance astounds me sometimes.

Can you see another in the practice? I would ask to speak to the practice manager and say either they sort it or you will ask for referral to a rheumy (I'm assuming you don't have one) and possibly an official complaint.

[Suffererc in reply to PMRpro]

It may be that the prescription is just late but it is worrying. Think I will give them a phone call. May be my mind working overtime because the Pred was cut with telling me. The pharmacist said she couldn’t find anything to tell them to reduced the dose on my prescription. Why do they like causing stress or is it drumming up business

[PMRpro Ambassador in reply to Suffererc]

No idea. Trouble is, it is at these really low doses that the taper really needs to slow right down. Dasgupta told us he often left patients at that sort of dose long term as he found it reduced the risk of relapse. If it was good enough for him ...

[Suffererc in reply to PMRpro]

Update - just been to surgery. They say they haven’t received my repeat even tho it is showing awaiting signature on my phone. Pharmacist doesn’t know why the dose was reduced in the first place, they have no record. Pharmacist is ordering prescription for me to collect next week. She said go Ask my GP on Monday and ask what is going on. Are they trying to tell me to stop taking Pred and reducing the dose for me???? Thanks for listening to my rant 😊

[PMRpro Ambassador in reply to Suffererc]

Don't worry - they'd hear my rant to their faces!

[Suffererc in reply to PMRpro]

We were asked to leave a surgery after we took them to court and the primary care was listed as a fault and they didn’t like it. So I am always careful 🙂

[PMRpro Ambassador in reply to Suffererc]

I was told to get out once too. The senior partner didn't agree with my diagnosis of clinical depression in my teenage daughter. They had also been appalling during my husband's cancer diagnosis and treatment and I'd outwitted them a couple of times - he couldn't swallow tablets so I asked for liquid formulations which they claimed didn't exist. I'm not that stupid - I'd looked them up in BNF! So I wen to the staff on the oncology ward - and what they sent home had to be provided by the GP.

Anyway - I took her to the local paediatric mental health team and spoke to her former doctor. SHE agreed and told me where to go to register with a different practice. Who was amazing - even visited when passing to ask how my husband was doing since HE wouldn't abandon the practice who had nearly killed him by failing to do a chest x-ray instead of assuming it was first an infection (3 different abx did nothing) and then asthma, Then he coughed up blood - but they couldn't find time to see him until the afternoon. So luckily he went to work - and his colleagues got the ball rolling on the basis of the x-ray they ordered, calling in favours so he had a biopsy done before he'd have seen the GP! Of course I got the blame for that - I wasn't even there! But the vascular surgeon and his wife and a rheumatologist saved his life. It was a bit nearies as it was by the time the biopsy result was available - I saw the expression on the oncologist's face when she saw him on the Monday morning. Definitely having an "Oh shit..." moment.

[Suffererc in reply to PMRpro]

Well done… more folks need to stand up to GPs and stop treating them like gods. I have no faith anymore.

[PMRpro Ambassador in reply to Suffererc]

We went to Uni with them - soon disillusions you!

[Suffererc in reply to PMRpro]

To add. I am going to give my GP the PMRGCAUK mag with the Dr Sarah Mullen piece highlighted. Whoops may need new GP

[PMRpro Ambassador in reply to Suffererc]

Best thing I ever did ...

[9lives]

Hi There must be something in the water, as I too have been summoned by my GP for a face to face appointment at the end of the month regarding my medication review. !!

I haven’t seen a GP for so long as I self medicate, as you do. (Approves by my GP.)

I’m currently on 1mg reducing very very slowly, to 1/2 mg, as per Dorset Lady regime.

It’s taking me 6 years but I’m nearly there, thanks to this site and the expertise that help us.

You have done really well to reduce to 2mg in that time frame, so we’ll done for that. Xx It’s a bit of a roller coaster it’s it,? with all the fun of the fair!! 😂xx

Regards

Carole

[oscarandchloe]

Ah! Guilty GP's showing up. I had a letter too inviting me to a Review which will be taking place each year near to my birth month (September). It's for patients with long-term conditions and medication. I read what would happen if you failed to go (in small print) and after 3 tries it seems they would stop your prescriptions!! This smells of houses being got in order after the complete dereliction of ongoing care during the pandemic. I wonder if there' s also a 'review' bonus being offered to them, a ploy to get the GPs acting like GPs and not hermits. I'm in the UK by the way.

[Dorsetgirl17]

Is it being done for their benefit or ours?

[PMRpro Ambassador in reply to Dorsetgirl17]

Loss of prescriptions for the people who don't turn up is likely to save a small fortune.

[Seacat30]

I believe that they are meant to offer everyone aged 40 to 74 a health check every 5 years and it goes up to every year when aged over 75 if they haven't examined you in the last 12 months.