Advice/opinions please…

[Sar9]

I started Rinvoq in June. I understood that once started I would be able to reduce my Methotrexate. I’ve not wanted to be on this drug for a long time and to be honest, even if I hasn’t started Rinvoq I wanted to come off it anyway.

I rung over a month ago and eventually managed to get through to the helpline, I spoke to a nurse who I don’t usually deal with and she agreed that she would decrease the dose of methotrexate & book a follow up appointment with my consultant or usual nurses to review how things are going with Rinvoq.

Well… the dose was never decreased, I’ve not heard from anyone (she said she would call once done) - I can’t decrease the dose myself as they are the prefilled injections).

Then yesterday I come home to a letter inviting me to a telephone appointment next week, with a consultant I’ve never seen before… feeling pretty annoyed.

I feel a huge lack of continuity and support.when I try to call it just always goes through to answerphone, I’ll get a call back when I’m not able to take it, or from someone I don’t know… who apparently just bare face lies!!

To be honest I feel like skipping me methotrexate this week and seeing what happens… if it was to have a negative impact, how quickly would I know about it after stopping it myself?

[Hidden]

Communication is often slow and needs improvement. Personally think it would be too early to drop MTX as it takes at least 3 months for a drug to be effective. A period of stability then a slow reduction of dose is what I’ve been advised. Rushing it will only cause setbacks and then how will you know if your drug is working? It may not be the consultant you usually see but you are getting to see someone I would rather that than waiting months . X

[Sar9 in reply to Hidden]

Yes I know what you mean. Maybe it would be rushing it. But it’s so frustrating when you just want a little communication, like why have they not adjusted the dose when they said they would.

I wouldn’t mind so much either with the new consultant, but the fact that it’s a phone call is what bothers me. It’s not the same and you get fobbed off.

Anyways, will see what happens and go from there.

Thanks for your advice!

[oldtimer]

The lack of continuity is unfortunately all too common and inevitable with an underfunded service. People are overloaded and don't do things that they said they would - they are pressed to do something more urgent and forget. It comes down to us every time to campaign on our own behalf and to make a nuisance of ourselves.

I was pleasantly surprised to be contacted by a new consultant last year with a phone consultation where I did feel listened to and at least a plan of some sort was worked out. But I do wonder how long it will be before he, too, is ground down and just doing what he can to keep the service going.

[Sar9 in reply to oldtimer]

Yer, it’s hard isn’t it. I understand the pressures being a nurse myself. But equally if I say I’ll do something for one of my patients. I would do it and let them know once I had. Just common curtesy.

Hate hassling or making a nuisance of myself as I don’t want to be labelled as that person!

Perhaps I will have a good experience with a new consultant and hopefully he will actually read my notes beforehand.

Thanks for your message. Good to know I’m not the only one experiencing things like this!