no meds: hi all just wondering if anyone has had to... - NRAS

NRAS

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no meds

Bully915 profile image
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hi all just wondering if anyone has had to stop all meds due to raised liver levels. the pain is terrible and just had a ten day bout of covid still fatigue from that.h ow long where you off and in pain thanks all

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Bully915 profile image
Bully915
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12 Replies

With the caveat that I’m not medically qualified. This was me last year. My ALT went over 150 (which is the threshold for worry), and my AST had also doubled, so they stopped my meds. Unfortunately, mine didn’t come down as anticipated, so I ended up off all RD meds for almost 6 months, as well as having to stop a bunch of other medication I take for other conditions I have in case it was one of those causing the issue. I wasn’t allowed any NSAIDs for the duration, and rheum were very reluctant to even give me any steroids because they can also impact the liver. Apart from two blocks of 3 weeks where they did let me have some pred, I’m not going to lie, it was pretty horrendous: I’ve yet to be under control at any point since finally getting diagnosed in Jan 2020, but the lef did help enough that I knew about it once it had been stopped. My levels remained persistently elevated so I got referred to hepatology in the end, who eventually gave me a clean bill of health, and my levels did start coming down at around the 5 month mark. Because of the prolonged elevations, rheum put me on to a biologic once I got the all clear last September (the lef was counted as my second failed DMARD, and they didn’t make me try a third the way they’d planned to pre elevations because DMARDs are generally heavier on the liver). I’ve had a couple of one-off elevations since then, and hep have said they ideally don’t want my ALT going much over 100, but the conclusion was it was a mix of a lef dose increase and a statin I was taking that irritated my liver and sent the values over the edge. But it reinforces exactly why regular blood tests need to be done.

As I understand it, my situation was a bit atypical: in the absence of liver disease, most people’s enzymes quickly come down once the offending medication has either been reduced or stopped. Hopefully, once your levels are back down to within acceptable (which is usually below three times the upper limit of normal), they can look at either reintroducing whatever med you were taking at a lower dose and see what happens, or start you on something else. It’s also worth bearing in mind that although referred to as liver enzymes, ALT and AST are not actually specific to the liver. All sorts of other things can elevate them, including what you’ve been eating, other health problems, and even viruses: I don’t know how the timing pans out, but is it possible this has been triggered by covid? In any event, I hope they start coming back down soon and you can be put back on something. Have you asked about the possibility of steroids in the interim? I would also say to avoid things that can be hard on the liver wherever possible, including alcohol if relevant.

Bully915 profile image
Bully915 in reply to

Thanks think your right my alt was 208 and AST was 104

Domhem profile image
Domhem

Hi, mine were elevated but I had developed autoimmune hepatitis, which they found out after testing. It’s rare so it’s unlikely you have that and usually liver levels will drop after stopping medication. I’ve had to stop meds before for WCC and they came back up after a couple of months. I hope you get some respite from the pain, sorry to hear about the covid too. You should be having regular tests to see which way the numbers are going. Good luck and I hope you take your meds again soon

Bully915 profile image
Bully915 in reply to Domhem

Hope all's well now and thanks for advice

Philjania profile image
Philjania

There are some (and I’m one of them) where elevated LF levels of ALT and AST are not caused by meds. Nor do I have liver disease. Luckily my consultant had experience of this before and after ultrasounds and fibroscans to confirm my liver health, I went back on MTX, a biologic, Arcoxia and pred! To end the stop start cycle, they reset my alert level to over 200. Not had a problem since though my RA is not improving yet from my nth biologic!!

Bully915 profile image
Bully915 in reply to Philjania

Hi yes liver seems normal again so hopefully they will get me back on my meds again.

Leics profile image
Leics in reply to Bully915

Glad things seemed to have normalised. I had to come off mtx because of LFT results they just increased week after week. I went back to normal after a couple of months and touch wood have been fine since. As mtx was such a good drug for me my rheumy team have agreed to put me back on it after 10 or more years but a lower dose of 7.5 by injection so I will see how I go. Fluctuations are pretty common and as someone else said I’m sure the Covid infection hasn’t helped in the least.

Bully915 profile image
Bully915 in reply to Leics

Thanks yes I felt better on my meds but feel as if been run over by a tank

Leics profile image
Leics in reply to Bully915

Yeah I feel your pain. I’m unmedicated atm and know how you feel. Not much fun is it. But then again I haven’t had to cope with covid too. Hope you feel better soon.

Bully915 profile image
Bully915 in reply to Leics

Covid floored me but no meds is worse thanks

Pulfs profile image
Pulfs

Just had an abnormal ALT result waiting on call from GP today , last time this happened had to stop MTX for 2wks then retest. Will see what she says this time . Hope yours is sorted soon x

Bully915 profile image
Bully915

Thanks got to wait another few weeks before can try again

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