But what if …

May 17, 2013 at 8:47 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 13 Comments
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So I’m increasing my methotrexate. Flippers crossed that all will go well, I won’t get any nasty side effects (except maybe appetite loss, which would actually be a great benefit!) and it’ll keep my disease in control for at least another five years … but what if it doesn’t?

Well I asked my consultant this at my last appointment. He’d said, ‘I’m happy to increase your methotrexate to 17.5 and then to 20 but after that we’ll have to start considering other things if that isn’t doing the trick’.

So I asked him point blank what other things? ‘Oh’ he said airily, ‘there are lots of other things available.’ Well it’s now or never I thought and said what’s been on my mind for a while: ‘I know about biologics, but I won’t qualify for them on the NHS, will I?’ He looked a bit startled and then had to admit that no, I didn’t stand a chance. With my fabulous blood results that never show anything wrong, I’ve got no chance of being offered them at all at the moment.

So … where would I go if the methotrexate doesn’t work or causes problems? Well, I can add sulfasalazine to the mix and see if that does any good. ‘Some people are on three DMARDs’ said the consultant, but even he didn’t sound really convinced about it.

So what it boils down to is that with the usual NHS foresight, if the methotrexate increase doesn’t work and then the sulfasalazine doesn’t work, I would have to wait until I was in a really bad way, unable to work, probably unable to walk (given that feet and knee are the worst bits of me) before they’d even deign to consider me for other treatments. As usual, let’s not make the effort to keep people OK and working – let’s wait until they’re falling apart before helping, even though surely doing it that backwards way doubtless ends up costing ‘the system’ more in the end!

Well, back to crossing those flippers and hoping it never comes to that!

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  1. It’s a shame they won’t just listen to our doctors…my doctor prescribed a med a couple weeks ago that she said probably wouldn’t work, but that the insurance company wouldn’t let her prescribe something else until we’d tried this…dumb…of course, it didn’t work…I’ve been in terrible pain this week. sheesh…

    I hope the methotrexate works for you!!

  2. Do you have access to hydroxychloroquine (plaquenil)? That is what my rheumatologist and I are trying right now. I have maxed out on my MTX dosage and we are both unwilling to take the next step to biologics. I am unsure how well this will work as I have just added the plaquenil but that may be another option for you.

  3. I’m sorry you’re not getting more aggressive treatment, but at least you know there’s more out there. There’s good evidence that combination therapy (multiple DMARDs) is quite effective. One study said it’s as effective as biologics (and certainly less expensive).

    Sulfasalazine has been great for me; you just have to titrate the dose up instead of starting at the full dose. And drink lots of water.

    Best of luck getting something to work.

  4. Ms. Penguin: Don’t you just hate it when insurance companies decide to practice medicine (rather than the doctors)? I don’t have flippers, but my fingers (and toes) are crossed that the increased MTX makes you a happy penguin. Please let us know how you’re doing. Hugs.

  5. Thank you everyone for the words of support – I probably should have said, I’m already on combination therapy as I started on hydroxychloroquine and have never stopped.it never worked for me on its own but whether it’s doing anything in combination with the methotrexate or whether it’s just a ‘sleeping partner’ I have no idea. As it has very few side effects I don’t really care provided something’s working for me! :-) Good luck to all of you too in getting and keeping your current (or future in the case of run4joy) medication working!

  6. That’s interesting that your NHS does not follow the ACR/EULAR protocol. Under their guidelines, positive blood tests are not required to move to biological treatments.

  7. The NHS makes its own rules! ;-) Well, that and NICE, the misnamed National Institute for Health and Clinical Excellence!

  8. Oh really? That’s crazy, so what do they do with people like myself who are sero-negative and never have any abnormal bloods? Fingers crossed I’ll never need to find out. Hope the meth increase does the trick for you Polly!

  9. Good question, Squirrel. I’m not officially sero-negative because I had a positive RF, but other than that I seem to be! I hope you never need to find out too – but there are so many new treatments coming on line, and hopefully prices will go down too, that you and I will probably both have other options by the time we need them. (This is my Pollyanna side coming out! :-) )

  10. I also have great blood test results, even when in a flare. I tried the triple DMARD (metho, plaq, and sulfa) without any improvement. (I wanted to delay a biologic, at 38 I wanted to have as many options ahead of me that I could). Fortunately, I have good insurance so I am on a biologic & metho now and it is a world of difference. Fight for it if you can. Can you use co-pay assistance if insurance won’t cover it? The biologic may really mean a world a difference for you and everyone deserves the chance to feel better. Good luck! .

  11. Very frustrating. For me, the biologic is what made a huge difference. :(

  12. I’m Sero-Negative and I’ve been on Humira and now Abatacept injections – I’m still learning about this however, and I was just wondering the same thing. I don’t know how this all works – I was in pretty bad shape before I was given the biological injections, and had tried several of the first line treatments – My Rheumatologist doesn’t explain all the ins and outs of why he is doing what he is doing unless I specifically ask, so I think I need to do just that.

    Sorry that you are having a rough time Polly – I hope things look up soon and the meds are sorted out. Xxx

  13. […] was thinking, ‘Doom, gloom, despair! My methotrexate increase hasn’t worked – there aren’t many options open to me if it doesn’t … will I end up in a […]


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