Update No 2

[Janann25]

As I said in my previous post, I made an appointment to talk with a private rheumatologist and this took place yesterday. He had a very different attitude to treating PMR than I had with my local hospital! He confirmed what he had told me previously, that PMR affects people for various lengths of time and in my particular case, he felt it would probably take a while longer. He didn’t feel a Synacthen test was appropriate at the moment, rather he felt - as we are so often advised here - that I should stay on my. Increased for two weeks, if OK then stay there for three months. Then, as we who have been trying to manage this illness for many years already know, its a VERY slow reduction.

It was such a relief to talk to a specialist who really understands this illness, not to have to try to cope with what I felt previously was an almost brutal instruction to reduce, reduce, reduce. I now feel as if I CAN manage this and that there is some hope for the future. I realise this last sentence sounds rather dramatic but, for those of you have are struggling on on your own, I know you will understand.

Thank you all again for your support and concern - I would never have got through the last four and a half years without this group.

Jan

[Longtimer]

Well done...I know exactly how you feel...it took me 10 years to find a "listening" Rheumatologist....not one that just gives orders.....it makes a huge difference if you can work with them....

[Charlie1boy]

Well, that is much better news for you. I’m sure it will help you no end, and take away much of the stress. It’s also good to read about a Rheumatologist who clearly understands pmr.I have been lucky to have an excellent GP, who has allowed me to manage my own tapering; however, I owe almost everything to the advice I have been given on the Forum.

Best wishes

Paddy

[Nextoneplease]

So glad this appointment went well for you Janann25 😊

What a relief to find a rheumatologist who understands and can convey that as well.

And I agree, this forum has been of far more help to me than any doctor so far (apart from the prescriptions they can write, of course!)

All the very best to you.

Nextoneplease x

[cycli]

that's a good outcome. happy for you

[DorsetLady PMRGCAuk volunteer]

Glad to hear you are in a better place - mentally if not necessarily physically as yet. It does make a difference in how you cope with your illness

[123-go]

Wonderful news! Your journey should be much smoother now that you are working 'with' rather than 'against'. Best wishes as you go forward.

[jinasc]

Told you he was one of the best. Slowly, slowly catchee monkey.

[SnazzyD]

Great news

[SheffieldJane]

Happy for you Janann25! 🌈

[Viv54]

Such good news , its great when someone listens , the only way is up ! 🌷

[Hirondelle]

What good news, that you have found a good rheumy. Can any one recommend one in Suffolk, or failing that, Norfolk/Essex, please?

[Janann25 in reply to Hirondelle]

I’m so sorry - I live in Wiltshire so I can’t help with your own area. If you post a message on the forum, I’m sure someone will be able to help you. Let me know how you get on.

[MrsNails in reply to Hirondelle]

jinasc is the lady for this info

[Bennijax]

Are you in London? I haven’t found such a rheumatologist in my two year journey with PMR, and am not being supported well at all. Saw one today at local MSK clinic. He is stuck, believing in fast tapering and to get down from 10mg a day to 3mg as fast as possible. Wants me on methotrexate but he can’t prescribe it from this local clinic, I will have to go a long way via two buses to get to try it.Well done finding yours. I hope I will find a better rheumatologist.

[Janann25 in reply to Bennijax]

Sorry but I’m not in London. But if you look at the post above, you will see that MrsNails has recommended that jinasc is the lady to help you. I hope you’re successful in your search.