So confusing continued

[Angiejnz]

Long talk with GP today and getting a better understanding of his reasoning I have pmr...... amongst other things. I had a large shwanoma removed from my spine as well as a second attempt at a 3 level fusion, which still isn't fused. I get two different pain collections from these. Layer over leukemia I had to have radical treatment for plus autologous bone marrow transplant 25 years ago which has left its own legacy. My immune system has always been rubbish prior to and post cancer so he is pretty sure I've got pmr and....... But we'll leave that for the next installment from down under after the visit with the visiting rheumatologist. Thanks soooooo much for the replies, ideas and support.

[SheffieldJane]

Hi I am from insomnia land U.K. so I thought I’d speak to you. Welcome to the site if you haven’t posted before, it’s pretty useful and friendly. You have been through a great deal, this must muddy your symptom picture and add pains that don’t fit. All the physical and emotional stress you’ve been through fits the aetiology for PMR, certainly. I do hope that your Rheumatologist is a good one. They will certainly want to sort out your Pred dose. Wishing you all the very best. Where in the U.K. is home?

[Angiejnz in reply to SheffieldJane]

London originally but told to go somewhere less stressful after leukemia. Could not have found anything more beautiful. Bit chilly today, we live under the mountain that gave us a peep at why last night was so cold! I am on 60mg Prednisone so have the awake nights too, but that's also when the other bits like to party too. When I was growing up and people asked what I wanted to be, I'd say 'petite'. I'm 174cm and built like fridge. Now I'd just say 'better' 🤣 Hope you get some rest 😴

[SheffieldJane in reply to Angiejnz]

Thank you. It was just one of those lonesome nights we all know so well. Living somewhere awesome must do you good right through to your soul. Saying that you are built like a fridge makes me want to give you a hug! I think I look like Pansy Potter the Strongman's daughter from the Beano or somesuch. 💪🏻😆🏋🏼‍♀️

I wondered about where you originated from because you mentioned coming home for treatment and someone may be able to recommend a good Rheumatologist for our conditions. Take good care! I envy you your mountain, and breathe........

[Angiejnz in reply to SheffieldJane]

I won't be coming home for pmr treatment, I'm trusting my wise gp to figure out my layers of health. Could do with a summer holiday, it's freezing here

[SheffieldJane in reply to Angiejnz]

My daughter and family live in Australia, they are going to Fiji next month. I can’t believe that they are in jumpers. I know it’s cold where you are but OZ ?

[PMRpro Ambassador in reply to SheffieldJane]

It's what you acclimatise to - in the UK everyone is wandering around in summer clothes at 20C - here I'm still in a pullover/jacket unless the sun is out and I'm standing in it!

[Angiejnz in reply to SheffieldJane]

Big big land mass so highs and lows depending on where you are , Melbourne weather is as fickle as English weather

[Angiejnz]

Btw shwanoma and repeat back surgery last year, bit of a hellish ride but onwards and upwards

[Nitrobunny]

I was Dx will ALL leukemia in 1997 and had two bone marrow transplants 97 and 99 and finally went into remission in Oct 1999. It was 5 years later when PMR showed up and GCA reared its ugly head in 2016. At the moment I’m in remission and continuing to taper prednisone from the high dose it took to bring the GCA down. I don’t know how much wisdom I have for you but I definitely wanted to acknowledge and show my respect for your journey. Wishing you all the best -

[Angiejnz in reply to Nitrobunny]

I had aml in 1990, treated at the royal Marsden thankfully with latest trial drugs as mine wasn't one you survived back then. It's good to be in the survivors club for that, now we have to get our membership to the pmr/GCA survivors club too 🤣

[DorsetLady PMRGCAuk volunteer]

Hi Angie,

You sound like a tough lady with the amount of rubbish you’ve had thrown at you over the years. Hope you can get a definitive answer when you see Rheumy and please keep us updated.

Good luck and take care.

[Angiejnz in reply to DorsetLady]

Thanks x

[DorsetLady PMRGCAuk volunteer in reply to Angiejnz]

Guess your picture is Mt Taranaki! Have a cousin who lives in Whanganui and has a batch at Lake Taupo, saw her (and both places) in January , but didn’t get to New Plymouth unfortunately! Perhaps on next visit.

[Angiejnz in reply to DorsetLady]

We have a bach at Omori at the bottom of lake Taupo, special place

[DorsetLady PMRGCAuk volunteer in reply to Angiejnz]

Yes, unfortunately weather wasn’t too good when we were there.... but another time! Maybe.

[Angiejnz in reply to DorsetLady]

We live under it so heavy snow means we're freezing!

[DorsetLady PMRGCAuk volunteer in reply to Angiejnz]

My daughter lives very close to Mt Hutt - outskirts of Methven- but fortunately the snow doesn't get as low as them very often!