Hi all, I’m very new to this and only joined yesterday morning mainly due to having a flare up and seeing what discussion groups were out there.
My PSA started about 8 years ago when I was 21, my knee was inflamed and I had skin peeling on both my feet and scalp. I began treatment on methotrexate 10mg but this gradually increased to 25mg before being placed on metoject 25mg about a year ago.
The joints that have been affected are my knee (seems to flare up once to twice every 12 months). My jaw is extremely bad and my opening has been restricted to between 18mm to 23mm over the past 18 months.
These are the main 2 but occasionally my elbow, left thumb and tops of my feet have been known to flare up also. My most recent flare affected my right knee, left foot and jaw. When I get up in the morning I think I’m walking like a retired cowboy.
Last time I went to see my specialist she mentioned going onto a new drug as she doesn’t feel metobject is working. Due to this flare up I’ve left a message with the rheumatologist to come back to me as for the first time it’s hit me emotionally as well!
Welcome, Alex. We’re glad that you’ve joined us, but sorry that you had to come looking for support. It’s rough: tell us about it! So many of us have been where you are now so make yourself at home here.
It sounds as if you’ve had a good run with methotrexate, which is great because it’s a fairly easy and cheap treatment. Lucky for you, your rheumatologist has decided that you need to move on: either mtx has quit doing its thing, or your disease is gathering speed. Whatever the case, please accept the most aggressive treatment that your doctor is willing to prescribe to prevent further damage. Because damage can’t be undone (although joint replacements can go a long way to making you mobile again).
Count your blessings, Alex, that you have a pro-active rheumatologist and that you live in a place with a health care system where you can get the expertise and the treatment that you need. Although I’m Canadian with limited knowledge, there are several Brits in this community who are experts at navigating the NHS and will be happy to give you some direction and advice.
We’re glad that you found us, and we hope that you will be too.
I’m in the UK too. And I’d second everything Sceenie has said. It sounds like your doctor is on to it all too. Personally I think we’re so blessed with the NHS. Seriously so. Hope she comes back to you very soon and you can get onto the new drug and hopefully that will help far more.
And as for the emotional impact - that’s so rational frankly. And here is the right place to talk about it and find ways of lessening it just a bit too. Read some of the others’ experiences it will so help to make you feel less alone in dealing with all of this.
Hope you feel like both you and your doctor are doing things now to help far more.
Hi Alex, you are one tough nut! I was a crumbling emotional mess on my first flare.
As poo says - it’s perfectly reasonable too in the situation. This is a great place for support, and many of us have found getting professional counselling / psychologist support immensely helpful, so don’t be afraid to talk to your GP about that too
