Got a call back and an email - after a nudge…

[Brushwork]

The Rheumy dept responded to my email quickly, but I had waited a week for the nurse who promised she’s get back to me and still hadn’t.

Upshot is I got an appointment with the consultant and then the nurse called me about the action to be taken in meantime…. The consultant had asked if I wanted to change from Tocilizumab to another mab (didn’t quite catch the name). Also wanted to know how long the rash and cough lasted post injection, well actually most of the week now. The antihistamines seem to help a bit, so rather than start yet another new biologic, I suggested I continue with the Tocilizumab, as it seems to still be fairly effective (I’d rather take it than risk a flare) at least until either, the allergic reaction continues dispute the antihistamine or I see the consultant early November. The nurse had no better option, so we agreed on that plan. Hope I did the right thing, but time, as they say, will tell.

I have to say, the problems with yet another treatment have left me feeling a bit anxious about my long term health and well-being. I have been extraordinarily lucky so far, in that I have no significant joint damage after 24 year and being very strongly sero-positive. I wonder how long my good fortune will last. .. Winter 20/21 was pretty horrid for my health and I’d rather not go back there.

Ah well, I am grateful for the wonderful care given by our health service and the lovely life I enjoy. Making the most of every day and remaining firmly in the present is the key.

Go gently

[allanah]

I'm glad you got some help at last . I hope this joint decision will help, fingers crossed x

[Marionfromhappydays]

Hoping your next injection goes well, sometimes its hard the choice we have to make, we are all.learning as we go along !

Glad you heard back from them too

[Hidden]

I too have had trouble with meds but found the one now.. you will too . Good luck x