Excellent Rheumatologist appointment.

After phone call only consultations owing to the pandemic, I had a very welcome face to face meeting with a quite excellent rheumatologist a couple of weeks ago. She was welcoming, thorough, attentive and perhaps, above all, reassuring. All symptoms were fully discussed as well as my problems tapering Prednisolone below the dreaded 5 to 7.5mg range. Skeletal x-rays and a huge array of blood tests were arranged including one for a long term non - rheumatological condition which she noticed had not been done for a long time by my GP. After this positive experience, the ensuing improvement in my mental well-being has even seemed to have improved my physical state. Having had no follow-up at all from GP since early 2019, this excellent consultant has given me hope that my GCA journey may have an end. Another appointment scheduled for early November.

[DorsetLady PMRGCAuk volunteer]

Good to hear.

[Hidden in reply to DorsetLady]

Thanks and best wishes

[SheffieldJane]

This is so good to hear. It makes all the difference in the world.

[Hidden in reply to SheffieldJane]

Thanks and best wishes

[SnazzyD]

Excellent!

[Hidden in reply to SnazzyD]

Thank you - best wishes

[Longtimer]

Is does make a difference if we are actually listened to, and we get explanations! I now have a supportive Rheumatologist....first one in ten years! Hope the tests go ok...👍

[Hidden in reply to Longtimer]

Oh so true! Good luck to you Longtimer. Ten years is indeed a very long time! 👍

[Longtimer in reply to Hidden]

Thank you, it dosen`t mean everyone will have problems that long...PMR gone now, new battle with adrenals!....keeping positive though....may have some energy one day!....

[Hidden in reply to Longtimer]

My main problem is adrenal insufficiency. The fatigue is almost worse than the aches and pains

[Longtimer in reply to Hidden]

Couldn`t agree more, I have no appetite, think my weight is stable now, but was losing a pound a week....so unlike me!....feel jittery, cold, weird fuzzy head.... I could go on!....are you 7.5mg now?

[Hidden in reply to Longtimer]

Am trying to keep on 5mg at the moment with moderate pain and fatigue. Was on 7.5 for a while with hardly any problems before tapering. Have tried to get down to 3.5 three times— not nice at all! Dragging myself around in a complete pain ridden stupor (only slight exaggeration)

[Longtimer in reply to Hidden]

Well done getting to 5mg....I will try in a couple of weeks to lower slowly at .5mg on DSNS taper. (big birthday coming up)...would be happy to get to 5mg, and as Rheumatologist said, I may have to stay there....it wouldn`t bother me at all....we plod on together!

[Hidden in reply to Longtimer]

Indeed we must. I try to remember that there are plenty of others on the forum that are having a horrific experience- far worse than me- best wishes to you and to everyone

[Longtimer in reply to Hidden]

Thank you, and you....

[Viv54 in reply to Hidden]

This is me !!

[HeronNS]

What a cheering experience.

I have to comment on your avatar name. The very first movie I was taken to, age 5 or 6, was The Titfield Thunderbolt. My first experience of moving pictures. When it seemed the train was coming towards me I stood up in my seat and screamed, much to my father's embarrassment! Once it was explained to me it was only moving pictures all was good. But the next few movies I was taken to were Disney animated features....

[PMRpro Ambassador in reply to HeronNS]

Funny - not that I ever got taken to the cinema as a child - but I always found Disney terrifying.

[HeronNS in reply to PMRpro]

The second movie I saw was Peter Pan and the little boy next door and I spent the whole of the following day running around our houses (literally outside, around the house) trying to take off and fly.

[Hidden in reply to HeronNS]

My first movie was Bambi and I cried so loudly when the fire threatened my mama had to take me out. Was a long time before she’d let me see another one.

[HeronNS in reply to Hidden]

I didn't see Bambi until much later. My second and third movies were Peter Pan and Pinocchio. I was always nervous of live action films with fire in them. Funny really, I think although I knew better I thought the fire would make the screen hot and it would really burst into flames....

[Constance13]

Wow - clone that Rheumie! 👏👏

[Viv54]

How fantastic,i am afraid i think they are very rare, lost faith in mine ages ago !

[Sophiestree]

The very first thing I did after reading this great post was to see where you live, I think we all want to see her!! What part of the country you in. I know people would like to know her name. Nice to read your post this morning... I'm smiling with you.

[Hidden in reply to Sophiestree]

Hello Sophiestree. I reckon I just got lucky.I’m in West Yorkshire. I think naming individual health professionals is perhaps not really a good idea on a public forum. I’m sure there are lots of good ones out there. My best to you

[Sophiestree in reply to Hidden]

I think there is a list being created to help people see the right consultant who understands our condition. Seems to be rare thing sadly.I'm in London so wouldn't help me anyway.

[PMRpro Ambassador in reply to Sophiestree]

Not really - but recommendations are noted and if anyone sends a PM to jinasc she will oblige

[Sophiestree in reply to PMRpro]

Yes, that's kind of what I meant. Not a pinned post list.... 😂

[PMRpro Ambassador in reply to Hidden]

It's fine as long as you aren't criticising them so it is only "Good press"

[PMRpro Ambassador in reply to Hidden]

We name Prof Sarah Mackie on a regular basis!!!!

[Hidden in reply to PMRpro]

Surely that’s with her consent

[borednow]

Sorry to disagree but if "your" rheumatologist is working for the NHS, then I can see no reason why you shouldn't name her. The aim of this forum is to help other sufferers after all. Good to share???!!!