Cancelled Blood Test

[Baner]

My 3 monthly blood test was cancelled due to the cyber attack at Guy’s Hospital. I am currently on 11mg Pred and 15mg Methotrexate once a week. I am told that blood tests will not be able to be resumed for another month. This would mean a 4 month gap between tests, also I will be on holiday in July so probably won’t get next test till August. Could this be a problem, have looked to see if possible to get tests done privately but cost was very expensive.

I am feeling quite well at moment 🤞and was going to go down to 10mg this week but thinking might leave tapering again till blood tests are resumed.

[PMRpro Ambassador]

The blood tests with MTX are more for the state of your liver - MTX can send the liver markers up and that is a sign for care with it, possibly even stopping it. How long have you been on MTX and have all your blood tests so far been stable?

[Baner in reply to PMRpro]

Been on MTX for about 18 months, last 2 blood tests have been fine. I am wanting to stop MTX, have first appointment for 12 months with consultant in 2 weeks time. Am going to request that I stop MTX, I don’t think it has made any difference to tapering, and fatigue day after is awful. I had private consultation with Dr Hughes and he said he doesn’t prescribe his PMR patients with MTX, but he suggested I ask my NHS consultant before stopping. The only contact I’ve had with hospital is via helpline nurse, who told me to keep taking it until I saw consultant. Appointment next week was earliest appointment they had!

[PMRpro Ambassador in reply to Baner]

Up to you - not them. Just say no! It is polite I suppose.

After a month I had half a day not struggling to put one foot in front of another just as the next dose was due. I'd already said I might stop it for a business trip to S Korea, if I hadn't I'd never have got there! By the time I got back 3 weeks later I was just starting to feel human so I never started again. You may discover it was doing something but it was too big a price for me,

[Baner in reply to PMRpro]

Given that this appointment has taken a year, I will be a bit less passive than usual and insist I come off of it. Feel I’ve given it a long enough try.

[PMRpro Ambassador in reply to Baner]

So do I!! As I say - don't need to insist though: Just Say No!