Re my post of 3days ago, I have been to discuss MTX with my GP today. He listened very sympathetically and took on board all that I had to say. After general discussion about MTX he looked up my scan results and they show that I have large vessel vasculitis like a road network, going from heart down to my kidneys and my large gut and also branching out to my shoulders and my neck. So, he says I would have to take a high dose of steroids for longer than would be good for me to deal with this situation and thinks that's why my rhuemy wants to introduce MTX to help with the damping down, I thought these large cells were only affecting my head so I guess I should be going down the MTX route by the way he explained it all to me.
I had a very long and uplifting chat by phone with Tina-shelly from the forum today, she read my post and contacted me to see where I live and it turned out we are only about 14 miles away from each other, we exchanged phone no's and are hoping to keep in touch! Thank you Tina.
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Sandybo
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Your disease sounds very like Takatasu's arteritis ( TAK ) as well which can be on a continuum with GCA. If it's any consolation the UK 's TAK expert, who is Prof Justin Mason at the Hammersmith in London , advocates MTX along with high dose steroid as treatment in the first instance. He also uses anti TNF's when he can get funding. I don't know if you saw my post from the other day but there is going to be another anti TNF drug trial for GCA, it may be worthwhile finding out if there is any trial sites near you.
If I were you I would ask for a referral to Prof Mason - unless managed properly you won't get the sort of follow-up you need for "Christmas tree" GCA and, personally, I have only met maybe 2 rheumies I'd trust.
This is something I've been saying for a long time - the concept of temporal arteritis is way out of date and when a patient with GCA symptoms doesn't have a positive TAB then the next step should NOT be telling the patient "the TAB is negative, you haven't got GCA" but, "Ah, we need a PET-CT". THEN they can say it is unlikely. Not even the TABUS is enough - it presupposes there is inflammation in the temporal artery and that doesn't always follow.
I'm told the new drug trial is for new diagnoses and relapsing patients - but it is a double blind trial which doesn't mean you will get the trial drug. But always worth a try - because often if the results look good early all patients will be offered the trial drug. Win-win in my book.
I would echo PMRpro about a referral to Prof Mason.
He is the large vessel Vasculitis expert and a thoroughly nice man too! I think with the extent of your disease you need to be in expert hands. I have posted a link to him.
I don't have GCA although a lot of my symptoms were " classic ". It's looking more likely that I have spondyloarthropathy and another type of Vasculitis called Behcets syndrome. I do have some large vessel involvement including a dilated thoracic ascending aorta. It took a CT/PET to show up the extent of my inflammation, unfortunately they are an expensive, scarce resource. I have just started Inflximab infusions ( anti TNF's ) and am hoping for remission soon. Biologic drugs have worked wonders for other types of Vasculitis so here's hoping the recent trials for GCA prove the same.
When you have a rare, complex illness you need to be in the most expert hands you can find!
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