Off RA meds "again": I started back on Methotrexate... - NRAS

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Off RA meds "again"

Ginger46 profile image
10 Replies

I started back on Methotrexate 6 weeks ago after being off anti inflammatories for 18 months because of my liver levels being so high. They've just stopped the Metho again because the levels went up again Alk Phos 409, ALT 236 and Gamma GT 468, I don't know what's going to happen now, I see RA nurse on 26th July which could have been the appointment to arrange my next biological infusion but I'm not sure if that's going to go ahead now. I'm just so fed up now, it feels like 1 step forward and 20 back xx

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Ginger46 profile image
Ginger46
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10 Replies
Nessa28 profile image
Nessa28

Be strong 💪 I can’t advise but can support which I do .💐

Ginger46 profile image
Ginger46 in reply to Nessa28

Thank you for replying, I'll try my best and keep smiling too 😄👍

SoulmanPaul profile image
SoulmanPaul

Hi Ginger.

My Liver scores were always high so had Mtx stopped on numerous occasions. Eventually I had a Liver scan and it transpired I had fatty liver. With that my Rheumy increased the upper limit and have not had to stop Mtx since. Maybe ask your nurse about a liver scan? Its ultrasound-like a pregnancy scan so nothing to worry about.

Paul

Ginger46 profile image
Ginger46 in reply to SoulmanPaul

Thanks for reply, I've had ultrasound scan and MRI, it did transpire I have non alcoholic fatty liver, docs love to say it was due to my "weight", I was heavier than what I am now but I've been on RA meds for years, also underactive thyroid so connection there. I will get sorted eventually as long as it doesn't take another 18 months, that was a nightmare off my meds. Glad you're doing OK on Mtx

nablur profile image
nablur

I hope they can find an alternate med for you that will work and not be harmful. 🙏🏻

Ginger46 profile image
Ginger46 in reply to nablur

Thankyou, I'm sure there'll be something for me, my rheumatologist said there's new treatments coming out all the time 😊

Doughnut61 profile image
Doughnut61

I have been told I can no longer take MTX owing to liver results after 6 months x I now take Hydrox and Sulpha and I’m so much better !! Hope this works for you 😘

Ginger46 profile image
Ginger46

Sorry to hear you had problems too, I can't take either of your new treatments, Sulpha was tried last year and did the same and my rheumatologist won't put me on hydrox as I have problems with my eyes and this could exacerbate the problem. Something will come up for me I'm sure 😊

helixhelix profile image
helixhelix

Which biologic infusion are you on? As not all require you to take methotrexate I think?

Ginger46 profile image
Ginger46 in reply to helixhelix

Truxima (Rituximab), infusion every 6 months or so, went almost 2 years last time because of liver levels stopping all other meds so that didn't go ahead either. They were wary in December when my ALT was 46 (6 above upper limit) but at 236 I think they'll definitely say "no" but we'll see xx

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