Less than satisfactory telephone consultation - PMRGCAuk

PMRGCAuk

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Less than satisfactory telephone consultation

Devoid
Devoid

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

5 Replies
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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.

Hidden
Hidden in reply to SheffieldJane

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!! 😱

Devoid
Devoid in reply to Jackoh

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.

Jackoh
Jackoh in reply to Devoid

Don’t blame you x

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