Remission - update

[watcher56]

Thank you to everyone who replied to my post of a few days ago about lack of appointments. Spurred on by you all saying I was being far too tolerant, I used the helpline appt I had booked ( to tell them healthcare at home couldn’t deliver as they hadn’t sent a prescription) to say that appts at 2 year intervals wasn’t good enough and didn’t allow discussion about remission and reducing my mtx.

It certainly had the desired effect! The nurse said she’d recommend to the consultant a drop to 15mg from 25mg and an appt in a couple of months to review this. She rang the next day to confirm and yesterday I got an appt letter for June 20th

I think it helped that recovering from flu, after a run of bad colds, it was obvious to the nurse that 25mg isn’t doing me any good if I have to miss so many injections because of illnesses caused by low immunity.

Thanks to you all for giving me the shove I needed, I’m no longer the invisible patient.

I

[sylvi]

Glad to hear of a result for you darling.xxx

[Downtime]

Good result. Goes to show we need be proactive when we’re dealing with our own health. I need to take a leaf out of your book!

[nomoreheels]

Pleased you're becoming visible again! I hope the June appointment goes well & that it brings forth more regular appointments. Also that the reduction to 15mg suits you. If not you can always ask to go up to 20mg, if it's too big a step.

[Gnarli]

Well done! Sometimes if you say nothing they assume you're ok. Let's hope you don't have to wait that long again

[Mmrr]

good result !

[Hidden]

Glad you’ve got a response, but it’s sad that you’ve had to employ the “squeaky wheel” tactic to get anywhere. Hopefully onwards and upwards! Cheers Deb

[pd118]

I use two week medical dispensers one for home one on the road thus know when refill needed

[Sandydemop]

Hi watcher56 I came across something yesterday called "The invisible disease association" The first person on the video has MS. Interesting reading.

[Arthur5]

Low immune system is an issue .

It's a case of when you get ill take nill.

I regularly have had to stop biosimilar due to infections.

It's great when they work but then I get a cold or bug , stop taking them, flare up and have to start again.

Has this more than half my life now and accept it is what it is but I won't let it beat me.

Be luck.

Arthur.