Some of you kindly gave me your thoughts on taking some 'emergency' pred so that I could get through playing at my concert on Saturday. Thank you all: I did take a moderate dose and felt so much better - most of the pain went, though it was totally exhausting.
Yesterday morning I was intending not to take any more because waiting for the consultant's input. However, by 11am the pain was rushing back and was quite horrible, so I took 5mg. This didn't get rid of all of it, but it made it much better, and within the limits of bearable.
This morning I did the same.
I don't think the morphine patches I was given are making any difference.
However, I then got this letter from the consultant in answer to the GP referral on Friday:
'...LVV for which she has weekly TCZ injections. I think it very reasonable to try morphine patches for her chronic pain, but as her blood tests, including inflammatory markers are normal, it would be better if she did not go back on prednisolone.
However, if her chronic pain is becoming more troublesome you could consider referring her to the pain clinic.'
🙁🙁🙁 Well, that's the end of me! The GP won't be able to prescribe any more now.
I'm not imagining it. Even my husband was astonished by the difference in me on Saturday. I could pick things up off the floor! And I try all the ways of mitigating pain, I don't see what a pain clininc is going to do.
And why does he insist the CRP must be raised, when I'm on TCZ?
Any suggestions?
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Sharitone
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"And why does he insist the CRP must be raised, when I'm on TCZ?"
Ignorance of how it works is the only answer I can think of. But since he is obviously oblivious of the fact that TCZ only gets about half of patients off pred altogether you are on to a hiding to nothing aren't you?
I think you need to sit down with the GP and lay out the entire situation together with the supporting documentation about TCZ. And then go from there. Of course, changing the rheumy could well stop the TCZ in the UK. How long have you been on it?
That's the trouble. I've had it for 20 months and it's unlimited. I would never get that offer again. And it certainly did get me to a lower dose of pred. If I mentioned serum calprotectin tests, he would pour cold water on it. It would take someone with a lot more clout than me to make him consider any evidence I could find.
But the fundamental point is that CRP is meaningless in the context of TCZ. And you have symptoms that resolve with pred. It all depends on the Pain Clinic though - if you can show them that other options don't work when pred does, they may be able to work it out ...
suggests ('We must also remember that tocilizumab lowers CRP and therefore ESR must be measured as well.') that if my ESR is also normal, then the rheumy may be correct in saying this is not PMR.
Thank you very much, that's really useful. My GP is sending me the details of a consultant whom apparently everyone likes, to get a second opinion. Expensive, but worth it!
Well, it's slightly tricky, but the fact is that, if your diagnosis is Takayasu's Arteritis (similar to GCA/LVV, involving the aorta - there has been some discussion of it on this forum), then the guidelines allow you to have it indefinitely. So if your rheumy enters a TK diagnosis on the application for TCZ, then you're home and dry. Whether they have to demonstrate that you have TK rather than LVV, I don't know.
On the other hand, don't be too upset if you can't get an extension. TCZ is not a benign drug, any more than most, and it was after 1 yr that I started getting problems.
However, it is ridiculous that you can't get it for longer if it is working for you. One person from here wrote a good letter to her MP or Steve Barclay putting the case, but she didn't even get an answer. I have wondered whether a petition would achieve anything.
Hi Sharitone! I'm sorry you have had this disappointing news. Perhaps if it's something doable get a second opinion. Hope you get all the support and help you need 💐
Thank you. I could ask the GP to refer me for a second opinion, and I shall speak to him tomorrow. But as Pro says, I might lose the TCZ, and probably would.
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To TCZ or not to TCZ??
Update on my GCA/Large vessel vasculitis journey: off pred and back to normal (with TCZ) 
