Feeling a little more positive!!

[Trixiechamp]

Good evening all,

I hope you are all having a good evening, just thought I'd touch base as I went and saw Dr Rod Hughes again privately at Chertsey after my disastrous appointment at my local hospital which put me back to where I was 6 months ago and left me feeling very despondent.

He agreed that the Rheumy I saw should be ignored (in not so nice words lol). However I have an interesting update - armed with all my scan results and blood tests, a long list of what's been happening since I saw him last, he now thinks it's very possible that I have Takayasu Arteritis!

So next steps is to get my GP to send him an email to get on his NHS list and fast tracked on to see him and get a PET Scan arranged ASAP. Then likely to be on methotrexate....I guess time will tell!

Sounds a bit like something I would have ordered at Wagamamas if it wasn't so full of carbs and salt...

Anyone got any experience?

Tanya x

[SnazzyD]

Well that's a result, if unexpected! Had to do some Googling for this one and yes it does sound like something from a menu 🍱 . I have nothing better to impart than that, but I hope you get a diagnosis soon and the appropriate treatment finally.

[SheffieldJane]

So he has diagnosed you with something quite rare and hard to diagnose? I bet it makes you furious with the other chap - stressy indeed. This is completely new territory for me and I bet for you. I am so glad you are in competent hands now and I hope it has been caught early. Let us know how it goes. I wish you all the best with this Tanya. X

[Trixiechamp in reply to SheffieldJane]

Thank you SJ, weirdly even though it's not great news it's comforting to know that I'm not going mad! (Head is spinning hence still being awake!) Dr Hughes is fairly confident it is some kind of vascular disease and although rare TA fits with my symptoms and age - sadly still no definitive test just like PMR and most of the other autoimmune diseases in their various forms but the PET Scan will be helpful.

But hey I'm glad I was taken seriously and that it wasn't just us that thought the 'get of the steroids asap and just cope with the pain' was a stupid comment.

So all in all, I'm a little scared of the new unknown but ready to gen up on TA now, just like I've been doing with PMR/GCA...I just hope I can find a forum that is as lovely and informative as everyone here x I will keep 'lurking' and give the occasional update! T x

[SheffieldJane]

Do lurk Tanya, your posts are valuable!!! I got a boost out of my diagnosis too after lots of false starts, I thought I was either a hypochondriac or actually dying. I can't sleep either, too much excitement at the Metabolic Bone Clinic today - oh the exciting lives we lead.

[Jackoh]

So pleased that your consultation went well. At least now you can see a way forward. As I mentioned before I see the same Consultant and it is so good that we feel we are being listened to rather than being spoken at.

[PMRpro Ambassador]

Unlikely there'll be anyone on here with much experience as although it is GCA for younger patients (honestly, it is histologically identical) it is even rarer than GCA. There is one lady on one of the forums who was given a dx of Takayashu's originally and one day noticed it had been changed to GCA. On enquiry she was informed that under 50 it is Takayashu's, over 50 GCA!

The Actemra/tocilizumab story extends to Takayashu's - it was been approved for use in it but not GCA last year. I assume they will keep it to one side for a while.

You're lucky though that Rod Hughes is both sensible and good - there was someone with all the signs and symptoms of Takayashu's whose doctor told her it couldn't be that as it only occurs in Asians. Which isn't true - it occurs in all ethnic groups. Not sure what happened in the end.

So don't desert us altogether - because your experiences are valuable to us too.

[Trixiechamp in reply to PMRpro]

Yes I mentioned Actermera/Tocilizumab to Dr Hughes and he said yes it is indicated for use but we would have to try Methotrexate as first line as they wouldn't offer on the NHS due to the £10k PA cost. So if the MTX doesn't do the trick that has been put into the playing field.

Also of course as always your knowledge is outstanding Pro, he also said that TA is essentially GCA in the under 50's....

Weirdly I'm now in a great mood, still in pain and obviously I don't want to be poorly but the relief that he was so open to other possibilities and that I may be finally on road to getting better is a huge. I've also heard from my GP this morning and he has already emailed Dr Hughes to pass over my care to him so it's all slotting into place nicely! (I think GP is feeling responsible for not following protocol and doing my bloods before giving me steroids and also refusing to refer me when he first thought it was PMR!)

I will be lurking here as I say, hopefully even just a listening ear because these conditions are so isolating and it's fabulous to have others going through the same that can emphasise when things are getting a bit too much.

[PMRpro Ambassador in reply to Trixiechamp]

I thought the recommendation after the consultation last year was it could be used for Takayashu's but not GCA. But maybe I'm hallucinating...

I'd love to be a fly on the wall when you write to that other numpty with details...

[Trixiechamp in reply to PMRpro]

As I understand it from what he said yesterday that is the case but they have to try you on the MTX first (guessing as it's much cheaper) and then only if that doesn't work, they try Tocilizumab.

[PMRpro Ambassador in reply to PMRpro]

No wasn't entirely hallucinating but of course RH is right.

First line is steroids plus methotrexate, 2nd line is steroids plus another DMARD or cyclophosphamide and 3rd line is tocilizumab, each of them for 6 months in the first instance. If each step works you don't change (does that make sense?)

So first will be pred plus mtx...

[Trixiechamp in reply to PMRpro]

Perfect sense, that's as I thought, hoping the MTX does its job...he also said the PET Scan isn't a definitive answer but will be very helpful to have. I'm extremely grateful to have this wonderful care and as for that other twonk, I'm not sure if he'll even be there to write to still, as he was another locum...oddly can't find any info on him anywhere despite extensive Googling! Still waiting for his follow up letter which should make for interesting reading..."Mrs R was a stressy, somewhat arsey patient who disagreed with everything I said and point blank refused to take my instruction to stop the steroid treatment asap" 😂🤣

[PMRpro Ambassador in reply to Trixiechamp]

"But who, as it turns out, was quite correct..."

And every so often I meet posts saying "You should trust your medical advisers implicitly like I do.."

Um - not always!

[Hidden]

I usually get a bit euphoric when some diagnosis is finally achieved. Firstly because you don't feel bonkers anymore and someone understands symptoms and, secondly, because at least you can get right treatment. Hope you start to see improvement once treatment starts!

[Trixiechamp in reply to Hidden]

Yes exactly! I'm not anticipating any fast acting miracles by any means but having gone from 'oh you'll just have to cope' to being told 'just be kind to yourself' - I could have kissed him!!

Although not sure OH would have been pleased (secretly though I think he wanted to kiss him too after the last guy we saw!) 🤣

[PMRpro Ambassador in reply to Trixiechamp]

I suspect a lot of people feel like that about him!

But it sounds as if you now understand our enthusiasm about him?????

[Hidden in reply to Trixiechamp]

😂

[SusyTe in reply to Trixiechamp]

So glad you are now under the care of Dr H, Tanya. He is wonderful - I think hubby and I have been tempted to plant a smacker on him before now too! 💋 😘

[5lupins]

Hi, I was told I had TA after a pet scan and put on steroids and mycophenalate. Six months later still very ill and down to 5mg is preds after only 3 months had further pet scan and put on methotrexate and still only 5mg of preds. Blood markers dropped. JOB DONE!!!! Told three years later to come of preds and I hadn't got TA but GCA.

No computer so no knowledge but I could not reduce preds and even now on 2mgof pred and 15mg of methotrexate I am not well. Aching stiffness and fatigue. No one listens so just keep going in hope😊

I am so glad that you have a good rheumi and wish you well. Jen