Hi all , after singing the praises of the dentist last week I have had a very disappointing consultant appointment today. Firstly it wasn’t a consultant but one of the team. Having discussed my medication and health, he went off to discuss with the consultant that I had stopped the methotrexate. He came back to say they wanted me to take it so that when I come off tocilizumab after a year I will have the methotrexate to keep the inflammation controlled. I asked him to look over my history because the reason I went on tocilizumab was that on 40 mg of pred and 25mg of methotrexate the inflammation wasn’t controlled!!!. When I mentioned last weeks webinar he said he wasn’t aware of it, surely if they are working in this field they should at least be interested. Rant over
Less than satisfactory telephone consultation - PMRGCAuk
It’s because we have to stop Tocilizumab after a year - driven by cost rather than clinical judgement. Some kind of safety net. Ideally an extension of Tocilizumab would be granted. I agree, the absence of curiosity is staggering and it’s changing. I am finding more and more research and articles on the internet. The development in 4 short years has been amazing.
The other day, I asked about when I would be coming off Tocilizumab but nobody seemed to have any clue except to say we will discuss it in 6 months. I'm about ready to start decreasing it myself but I'm not sure how much success I will have doing that.
It was a telephone visit and I'm not even sure who it was. I think my 30 minutes of time was up and we mostly talked about the past 30 years.
At least I'm sparing a lot of prednisone. My stash of prednisone will last years but I may have to check the expiration dates.
At least in the UK there is a time frame for Tocilizumab . Just part of the learning curve I suppose.
Totally understand the rant!! 😱
Thanks it needed to be said , I was feeling really positive before the phone appointment and came off in tears, every time he said I hear what you are saying I could tell exactly the opposite was the truth!! Now to try 10 mg of methotrexate, just to satisfy them, but I certainly aren’t persevering as I gave it long enough before.