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MTX not working - any ideas what they'll try next? Options
Mairead-H
#1 Posted : Wednesday, August 11, 2010 9:36:48 PM Quote
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Location: Birmingham
I'm allergic to sulfasalazine, they think I'm too far gone for plaquenil and now it seems methotrexate may not be working. I started on MTX beginning of May and there still doesn't seem to be much improvement even on 17.5mg. I'm also on steroids which they're now reducing to see whether what improvements I have had are as a result of the MTX or the steroids (which they suspect). Since my steroids have been reduced Lo! my symptoms have worsened so I suspect the worse.

I've also become severely anaemic, been stuck on high dose iron tablets and now there's some concern/discussion about ulcers, bleeding and/or bone marrow problems.

But enough of my yelping. I'm resigned to the fact the MTX probably isn't working and they'll try something else. So I can prepare myself, do some research and plan my life does anyone have any ideas or suggestions what they might try next? I'm presuming whatever's cheapest but I don't know what that is lol.

Thanks for all the help I've had so far which really has been invaluable.

xx
Hannah-L
#2 Posted : Wednesday, August 11, 2010 9:43:38 PM Quote
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Location: North Lincolnshire
I was on MTX for a few months after I was first diagnosed... and it didn't work for me either. I then went through a procedure where a lot of forms are filled in and number of affected joints are counted, to see if I was able to get an Anti TNF called Enbrel... I'm not sure if it's what you'll be put on next, but it's what I was put on and it's been fantastic and gave me atleast a year of hardly any flare ups, unfortunately it's not as affective anymore but it worked very well when it did. It does however cost the NHS about £10000 a year I think!
Best of luck
Hannah x
Lylie
#3 Posted : Wednesday, August 11, 2010 9:59:59 PM Quote
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I wonder if Leflunomide would be an option for you? I "failed" on Sulph and Mtx, then on Mtx and Plaquenil together, and eventually we had a go at Leflu with Plaquenil.

Apart from other non-related problems, I seem to be doing better on this cocktail than anything else; just as well as I am not ever going to charm my grumpy old consultant to even consider anti-TNF's, he did all the DAS, and although I scored WELL over the baseline, refused to even think about them.....but it was the end of the financial year!!!

Anyway, I hope you have Good luck with finding something that is effective for you, Love Lxx
Always be aware that what you do might hurt others........and if it could, do nothing without careful consideration of the consequences
dorat
#4 Posted : Wednesday, August 11, 2010 10:25:22 PM Quote
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Location: Huddersfield
Hi Mairead,

Sorry you still haven't found the right cocktail for you.
They could maybe add Leflunamide to see if the combination works or as you've failed on 2 DMARDS the next step could be anti-tnfs, it's hard to say because each consultant has different views on treatment.
Hope they come up with something effective for you soon.

Love, Doreen xx
Ailsa-H
#5 Posted : Thursday, August 12, 2010 8:57:23 AM Quote
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Hi Mairead - I came off MTX last months after 5 months as it had made no difference. I started leflunomide 5 weeks ago and can already feel a big difference in pain, stiffness and energy improvements. Although the plaquenil may not be 'strong' enough on its own, my rheumy nurse said it has benefits in combination with other drugs, so maybe they can consider that. I've been on plaquenil for 18 months and this new combination seems good to me.

Good luck and hope you get something that workd for you soon XX Ailsa
Mairead-H
#6 Posted : Thursday, August 12, 2010 10:59:29 AM Quote
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Location: Birmingham
Brilliant, thanks a lot everyone. That's given me a lot to work with already. ThumpUp

I'm lucky in that I have a good rheumy team but if I know in advance what might be coming I can prepare my questions, do some research and plan a few months ahead. I have a very active, busy life (even more so since being diagnosed with this as I refuse to give in to it) so the more I know the better I can plan.

Thanks a million BigGrin
Rose-B
#7 Posted : Thursday, August 12, 2010 4:37:14 PM Quote
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Joined: 4/20/2010
Posts: 1,749
Location: Somerset


Hello amd welcome to the formum.

Sorry that you have RA though. I am similar to you as they have not found the correct mix for me
I have had mtx and sulp added in 3 times but then stopped . Then after a long time getting my BP under
control I started Leflunomide but unfortunatley also had side effects so stopped that month ago
and waiting to hear what the next stage is. Had steriod injections to tide me over but like you would
like to be free to live a near normal life.

Good luck you will find this site great.

Rose ThumpUp
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