Not sure what to do!!

[Purplegloss]

Not a very good heading, but it sums up my current situation with my GP.

You will know some of this, but just to recap, I have had Polymyalgia for 5 years now, and the first two years I saw my lady Doctor every three months, having blood tests etc, then she retired at the start of the pandemic, so my current male GP I have been in touch with for three years, although never set eyes on him, or ever had a conversation with him in all that time. However he has been happy to let me sort myself out up until now, and I write to him every three months so he can arrange blood tests, and I tell him how I am getting on. I started on 20mg and now on 4.5mg after a flare-feeling good at the moment. Having just past the 5 year mark he is not happy that I am still on pred-neither am I for that matter, but I know all the problems of getting off them. We are now communicating by direct email, as opposed to those you can't reply to, which is good, and he at first wanted to get in touch with my Rheumy who I got rid of a couple of years ago, because she is a one size fits all type, and going down at 1mg a month sent me off into a flare, she never listened to me, and just talked at me, which is why I stopped contact. Just had his latest reply to me, and he says he accepts my reason for not wanting to see her again, but in order to continue prescribing steroids as safely as possible, he would prefer to have some expert guidance. I can understand that, and I guess it means he does not know what is best for me, so ok with that. He says there are other medications for managing Polymyalgia which can be kinder on the bones, he doesn't say what they are though! He wants me to see a different Rheumy-does any one know of a good one in Hampshire or Dorset, as I live on the border between the two. I did ask if I could drop from 30mg Lansoprazole to 15mg, and he said that yes that sounds a sensible idea. Apparently I don't need to do it gradually, I can just start straight away with the lower dose. Help please before I reply back to him again tomorrow.

[PMRpro Ambassador]

"He says there are other medications for managing Polymyalgia which can be kinder on the bones"

REALLY????? I think not - if there were they would use them!!!! And I. as a member of a research group with probably the top PMR rheumy in the UK, would have been told about them! He probably means methotrexate or leflunomide - but they don't manage PMR, they MAY allow SOME patients to get to a lower dose of pred in their role as steroid sparers and there are odd cases where a DMARD works well for a patient and they are able to get off pred. But they are a minority.

For goodness sake - if there were alternatives to pred does he not think all rheumies would be using them and we would be clamouring to try them? Mind you - you may be a while getting a referral in the current climate, you won't be considered an urgen case having got to 5mg on your own.

[piglette]

“He says there are other medications for managing Polymyalgia which can be kinder on the bones"

Tell me, tell me!!

[KASHMIRI1]

Good morning my rheumatologist is Doctor Khurshid at Poole hospital. He has been great with me. Quite serious and very professional. His specialism is GCA and Polymyalgia

[PaulineSlow in reply to KASHMIRI1]

I see Dr Khurshid as well and think he is very good.

[KASHMIRI1 in reply to PaulineSlow]

He has certainly helped me along the rocky high road of GCA

[Purplegloss in reply to KASHMIRI1]

Thanks for your help.

[Purplegloss]

Hi, thanks for that, and that is just a short train journey from where I live. Is he NHS or do you see him privately.?

[PaulineSlow in reply to Purplegloss]

Dr Khurshid is with the NHS. I was referred by my local GP and had an appointment within 2 weeks.

[Purplegloss in reply to PaulineSlow]

Thanks. He sounds promising. Maybe he should go on the list!

[Sharitone]

I also live on the Dorset/Hants border, but only got the option of Xch or Lymington. I opted for Lymington because it had higher NHS scores. My rheumy doesn't seem to think that patients know anything, but he does do his job. It is part of Soton hospital, so you get access to their rheumatology helpline, which I think is rather good and will get you answers quite quickly. If necessary, they get advice from the rheumy. I had to wait 9 weeks for the initial appointment, just over 2 years ago.