Hello wise ones, Just when I thought things were looking up, another issue raises its head to confuse and frustrate me. I have been on MTX for a year and leflunomide since end of March this year. I really feel like I have turned a corner, especially with my hands and feel quite optimistic for the first time in a while. Yesterday I got a call from rheumy nurse concerned about my blood test, specifically my liver. She said the results are right at the top end of what they deem as acceptable so they need to keep a close eye on the situation. When I asked what happens if it goes too high, she said I may have to come off meds for a while. In my head I’m shouting NO! NO! NO! NO! I’M JUST GETTING MY LIFE BACK! But I actually said, oh ok, that’s disappointing!
I don’t drink alcohol hardly and I eat well, in fact because I feel better I’ve been eating really healthily and shifted nearly a stone of all the weight I’ve gained in the last 18 months. I’m terrified of life without medication again, I really am. Anyone got any wisdom on this? Do they usually take you off all meds when this happens or just one at a time? I’ve got another blood test this week, fingers crossed it comes down a bit.
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HeadInASpin
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Hi Headinaspin, I have the same. My LFT blood tests are always at the top end of acceptable. For me it has just meant that I continue to have monthly blood tests (rather than 3 monthly) and as long as it doesn't continue to increase they are ok with me continuing on mtx. Like you I drink very little alcohol and my diet is healthy (except for additional chocolate!). I'm slightly overweight but not so much the doctors have told me to lose weight. I've been on mtx for about a year now and every month I keep my fingers crossed I can continue with it! 🤞. I hope it goes well for you.
Try not to worry too much..l was swapped off Leflunomide..just one of three meds I was taking.I can’t remember the others…..it was 20+ years ago…..I had no further problems & here I am doing fine….just on one Biologic for the last 8 years.
I had a similar issue when I was taking Azathioprine. I had to stop, and as well as having blood tests, had to have an ultrasound of my liver. Thankfully after being off it a few weeks, the scan was normal with no damage. I had not long had my dose increased to maximum for my age.
After that I was switched to MTX, that was 8yr ago, and had no further issues with my liver. It sounds as though adding the Leflunomide may be just a bit to much. You cold perhaps ask if you Chen just stop the Leflunomide and see if that settles things down 🤗
Thanks for the reply. Glad things worked out for you and your scan was ok. I have been so poorly this last 18 months and the MTX alone wasn’t helping so I’m really hoping I don’t have to stop either tbh. 🤞🏻it’s a temporary thing.
I wanted to give you an update. My daughter is healing well after cuts from Laporoscopy, its been 11 days since date of Op. She went back on MTX 15mg tablets this Thursday and I am trying to convince her to take Enbrel this Monday, which is 11 days after Op and her cuts have healed but she is too scared to have it before 14 days. Her RA is so painful and that is putting her body under strain and I feel it could impact on her 4 week recovery before she goes back to work. She would want meds to kick in before she goes back to work which now is 2 weeks time. Grateful for your opinion please.
You're not having much luck are you?? Poor you. 🫣 If you look on the posts to the right of yours you’ll see there's quite a big discussion under ‘High Liver Function Tests’ which may reassure you.
If you have to come off MTX for a week or two you shouldn’t have too much in the way of flares as it stays in your system for a long time. They might just need to do some tweaking of MTX and Lef to bring your levels back down.
Do hope they stay stable but if the worst happens it’s not the end of the world as there are many alternatives to both of those drugs these days which may possibly suit you much better. All best.
Methotrexate can stay in the system for may be 3 days, However, for most people, the drug will be eliminated within one week of taking your last dose. More specifically, when taken in low doses, it can stay in your system for 16 to 55 hours after your last dose. When taken in high doses, it can stay in your system for 44 to 83 hours after your last dose. Hope this helps
I had a similar phone call from my rheumy nurse a month before I went on holiday. My blood tests were showing abnormally high liver count levels and she told me to immediately stop my methotrexate and amgevita. She asked if I'd had any infections and I realised I'd been seeing my dentist for gum pain which turned out to be an abscess. Three weeks and a course of antibiotics later my liver count was back to normal and I was able to start back on my meds. Was I glad! I've been on Methotrexate 20+ years and Amgevita about 10 years. I just didn't realise how much they were helping me till I stopped taking them!
Could you maybe have an underlying low level infection somewhere?
If you’ve tried sufa, and mtx isn’t enough on its own and you can’t tolerate lef then the next type of medication types they try are biologics which you may find works well for you when they find the right one. So don’t be too disheartened if they say you have to stop the other medications because there is another option.
I have been on methotrexate for about 8 years now. When I first started I took 8 tablets per week and my liver results were poor. Doctor phoned me every time to express concerns. I got really fed up and decided to lower the dose to 6 tablets per week. Bit naughty but told my rheumy consultant and doctor. No problems with poor liver result readings since.
I still have some lower dose injections from when the dosage was increased before Christmas. I'll see what the next blood test looks like but I might suggest I try them and see if that makes a difference.
There are so many reasons your liver tests could be off, for me it was the methotrexate. Maybe even reducing the dose of one might help. Hopefully they will do something like that.
I had the same with methotrexate. They took me off it and gave me Humira straight away. Three blood tests later liver was ok and has been since. I was told liver mends itself.
Don’t you worry nowadays there are plenty of options for us. 🍀
Hi try not to worry too much I know it’s easier said than done. This can happen occasionally. Hopefully it’s a blip & a few weeks off meds will help the liver recover. Our livers are very good & quick at recovering. 🤞all we be ok.
Last year I was told that my liver function test was rather high, I was seen by a Gastroenterology Consultant, after scans etc she prescribed a medication called Ursodeoxycholic acid capsule, I take 500 mg daily after my main meal. I had my annual review with her last week and she was quite happy with my blood test results 🙂
Thank you all so much. I feel a little better about it now. It's just that, having been so poorly since this disease hit me, I'm terrified of going backwards. It's good to know that other people understand and your support is greatly appreciated.
I have been on retuximab infusions for approx 6/7yrs. 4 Yr ago u was referred to bowel consultsbt as bloods showed raised liver function. Back then we had telephone call consultations & I was put on Ursodeoxycholic acid tablets. 2 x 3times daily. Still had infusions/no change in meds. But now been put on Tocilizumab injections. But still on liver tablets. I'm hoping you don't have to come off your r.a. meds ❤
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