Concerned: Have been told to stop taking methotrexate... - NRAS

NRAS

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Concerned

Ellieellie profile image
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Have been told to stop taking methotrexate and sulphsaldine immediately due to liver results. They said my results came back deranged. Am worried that I am going to really stiffen up without the meds. I still work so need to be able to cope at work.i am having a further blood test next week. Is this unusual? What else can I do to help myself. I am 56.

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Ellieellie profile image
Ellieellie
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7 Replies
nomoreheels profile image
nomoreheels

I wouldn't worry too much just yet. I'm on the same mix though I've been on methotrexate 7 years & sulfasalazine less than a week but my liver results can rise at times, always if I've had a increase in MTX dose. Other times for no apparent reason but I have wondered in the past if it's when I've been regularly taking co-codamol or any other med that's metabolised through the liver. MTX & SSZ can both cause liver toxicity so it may be that they just need to see if one or other is causing problems, they may say to stay off them until another test can be taken if your LFT doesn't show a decrease. A week off your meds shouldn't make too much difference, just rest as much as you can if you start to feel as you shouldn't. Are you prescribed NSAIDS & were you asked to stop those as well?

If you're concerned you can always ring your Rheumy nurse, I would certainly do that if you start to flare but I hope it doesn't come to that.

Crusee profile image
Crusee

Hi

I had to stop mtx jabs and sulphasalazine at beginning of November as I had acute kidney failure.,which was attributed to those drugs. My kidney function went down to 14 % and I was in hospital.At first I didn't notice the withdrawal of the drugs as I was in bed most of the time and as,I felt so poorly anyway I really didn't notice,except for the fact that I didn't have the awful sickness and other side effects that I used to experience 2 days after the jab.

However when I got home it was  a different matter.It was 5 months before I could be given any other form of RA meds.My kidney function had to have time to improve (which it now has but only up to 40 %).In those 5 months I had been off work as I had really stiffened up and in pain,I could only be allowed hydroxychloroquine as the rheumy told me that withdrawal of that too would cause a massive flare up and I didn't need that.

I am now on steroids which make me feel great (as it reduces the stiffness but does nothing for the pain) and I take cocodamol during the day to manage pain and morphine at night if it gets too much.The morphine sends me off the planet so I try not to use it too often as I believe  it can become addictive.

I am not saying you will suffer the same withdrawal symptoms but it may be worth speaking to rheumy to get a backup plan especially if you are going to go back to work.

I know that kidney failure aside there  was no way I could have worked without any RA meds even if they did make me feel awful for a couple of days at the weekend.

I hope your blood test next week brings better results so you won't have this interruption in your meds,but it wouldn't hurt to get a plan b in place just in case.

Good luck and hope all goes well.

Crusee

XX

Matilda7 profile image
Matilda7

Have you considered changing your diet?

Ellieellie profile image
Ellieellie

To what? I am not particularly overweight. I try and watch what I eat.

farm123 profile image
farm123

Sometimes it can be a 'one off' change in results and your next test could be normal and you will restart either one or both drugs and be retested shortly after.  If not you should be offered another drug - there are quite a few others (assuming you are new to this).  There is not an easy straight forward path with this disease as we all respond differently to the drugs.  Farm

earthwitch profile image
earthwitch

If they still say you can't take them after the next blood test, then try to get an appointment with your rheumatologist as soon as possible to ask about alternatives.   It may be that you could be considered for antitnfs if you are no longer able to take DMARDs.

cathie profile image
cathie

I'd try to get an urgent appt with the Rheumy they cant remove all your meds with nothing to help

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