So had an appointment with my rheumatologist on Friday and as, at my last appointment in May, he explained he intended me to be on subcut MTX for a few months then intended to move me on to a biologic, I was expecting to have the good news of moving on to the next stage medication.
Unfortunately its not to be…he intends to keep me on MTX alone
Still, I sucked it up and had a good weekend away with my man anyway.
Well, doesn't that just suck! I remember you were just getting your head around the biologic idea ... did you bring up the biologic, or did he explain his decision?
The good new is that you had a good weekend anyway. Good for you.
Yep Seenie it sort of took the wind out of my sails lol.
He said that he doesn’t feel I need to go on to one yet, even though he agreed I’m not doing as well as I was.
Has ordered x-rays of hands and feet again and an ultrasound of my shoulder as the enthesitis is so painful there.
He feels I’m coping with the start of the flare ok (?)
I reminded him that he had said about starting a biologic because of spinal issues…he said he’s see me again in 4 months and reassess then.
Had a lovely weekend, although Rob nearly passed out when he saw me give myself the MTX…he doesn’t like needles! Lol
Jeez Loo-eez! You’re not as good as you were but he thinks you’re coping with the start of the flare OK. Explain that to me. No, never mind.
Its not just me then Seenie? Thought I was in the twilight zone!?
I don’t think so, Louise. My guess is that he didn’t want to do the paperwork that such a prescription would require. Maybe I’m just being too cynical, but …
Yeah might have some bearing…I was in the last clinic slot on a clinic that was running an hour and 15 minutes late! Just my luck lol
I can only imagine how you feel, that is a drag. Haven't you all ready been on mtx for a few months? I know sometimes we have to jump through so insurance will pay for it and I would imagine it is the same where you are but golly when will it be enough? I will hope on your next visit it will be time. I am glad you had a nice weekend away.
Sounds typical. I am battling the same issues and do not want to go back on mtx.
I’ve been on MTX since July 2011, and switched to subcut a couple of months ago so I’ve given it a good go.
My main worry is as the pain has increased in my upper back, where the MRI showed bone marrow oedema, that damage is occurring there.
Trying not to even think about work issues!
Seems like an awfully long time to be on MTX and to still be having pain and clear signs of damage. I know you have less choices because of the NHS, etc. but surely there’s a way to appeal or get a second opinion? Don’t give up on getting meds that help you more, Louise
I won’t, have my next appointment through for middle of Jan, will keep on plugging away, my GP is not too impressed either so have her backing too.
I hope so Sybil, but as I work in the NHS and if I go off sick because my flare become bad enough, that also cast the NHS money…but its not from the rheumatology budget! Lol
I will be armed with more material next app. But as he told me he was going to move me onto a biologic in my May app. I was somewhat unprepared…wont do that again!
Your GP may be your best friend in this. If you need to book off work b/c of a flare, she can perhaps expedite matters.
Think you maybe right Seenie, Just hoped I could avoid time off work altogether…have several weeks annual leave spaced out over the next few months to help me over the worst times so fingers crossed
Well obviously, you wanted to avoid time off work. You may just have to force the rheumie's hand, seeing he didn't follow through with the treatment that could possibly have kept you comfortably on the job. It's such a morass, isn't it?
Good idea Sybil, unfortunately each time I have started to go downhill in between app. I’ve phoned the rheumatology nurses who promptly look at my latest test results and say " its not a rheumatology problem cos your blood work is fine (I’m seronegative and always have been)go see your GP" So I had an idea today… i bribed one of the hospital porters with chocolate and got him to find out where the nurses hold their rheumatology clinic, which was today so now I know where it is I will gate crash it if I need to, and show them the problems I’m having…sneaky I know but a girl has to do what a girl has to do! Lol
All things are possible with chocolate.
Yep, universal language is chocolate:)
Found out this week that my Rheumatologist is also a newly appointed Clinical Director at the hospital so he may well have had his eye on the pennies with his recent decision to not move me on to a biologic. When I discussed the issue with one of my colleagues (Renal Reg.) he was very helpful…he told me off! Apparently I always down play the difficulties I have and that, after me telling him what Id said in the appointment, if he’s been my doc he wouldn’t have put me on them either. So lesson learned? Don’t volunteer that you generally do without pain meds. Don’t list what hurts most if its not my spine first…start with spinal issues.