Hello, I am wondering if any of you more experienced people can help? My husband has been on methotrexate injections. Last year he had hydroxychloroquine and a steroid injection to control a flare, but the steroids affected his diabetes, which has has now brought back under control with diet and loosing weight. He is reluctant to take steroids again. This year his RA worsened and the doctor increased his methotraxate. He then developed liver side effects with the result the doctor took him off the methotrexate immediately and gave him ciclosporin at a low dose for two weeks then a higher dose followed by adding low dose methotrexate back. His liver test has shot up this week and the nurse has told him not to take the ciclosporin or the methotrexate. (Some of his kidney blood results were out of the normal range in yesterdays blood tests). We are waiting for a phone call back once the nurse has spoken to the doctor.
I was wondering if he the doctor has to prescibe another DMARD? Are biologic less or more likely to effect the liver? Is this likely to be irreversible damage? He has recently had both his Covid booster and 'flu vaccine.
Aswell as RA he has diabetes, highblood pressure (both controlled by medication), CLL (watch and wait stage), and a pulmonary condition.
Any thoughts from your experiences of different medication or possible options?
Many thanks.
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strongmouse
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When you say Doctor …..do you mean a GP or your husband’s Rheumatologist?If it is your GP who is prescribing these medications I should ask your Rheumatology Nurse if your husband can have a consultation with his Rheumatologist.
Sorry, I mean my husband's rheumatologist. He has an appointment with the Rheumatologist at the end of he month, but we would like to have as much information as possible to know what questions to ask, and what the possibily options are. Thanks
Well to know the possible options your husband’s rheumatologist is definitely the one to ask…he knows your husband’s full clinical history & how he has reacted to drugs in the past…& no doubt he will be in touch with any other specialists looking after your husband.On here people can only say what their experience has been…..it’s not really possible to know what questions to ask about a drug regime designed for somebody else with different health problems.…. ..because we are not qualified to do that.
But generally If the nurse doesn’t come back with any further information, I would ask if she could possibly bring forward your husband’s appointment with his Rheumatologist,so that he can be examined & get settled on his drugs asap.
I hope you get some help & l professional information very soon.
I'm not sure how common cyclosporin is for rheumatology patients, if your husband has CLL he might not be eligible for biologic therapy as if you have got or have a family history of cancer they won't always prescribe them hence why your husband might be on cyclosporin rather than biologics.
I'd definitely give your husbands rheumatologist a message, blood tests can change really quickly and they aren't always an indication of permanent damage, sounds like your husbands liver doesn't like methotrexate which is quite common. Sounds like they are looking after him and hopefully they will find another medication he can tolerate.
Thanks for replying Marionfromhappy days. I wondered if the ciclosporin was prescribed because he had limited options.
I hope you are right that the blood test isn't a permanent indication of liver damage. Yes I do hope there is something out there which works and doesn't do too much damage!
Your husband has a lot going on unfortunately & I’m not sure being so specific we will have such similar experiences to share, though happy if I’m proved wrong. Anything is better than nothing when faced with such a situation.
I wish him well & hope both that his Rheumy finds him suitable options & that the wait & see doesn't turn out to be CLL (Chronic Lymphocytic Leukemia?).
I was taking mtx and leflunomide up to Feb of this year. I hadn’t been under control at any point, so the plan was to stop the mtx completely, increase the lef to max dose, then add in sulfasalazine. After two weeks on the increased lef, I had monitoring bloods done only to discover my liver was extremely unhappy. Stopped the lef immediately, and for the next 6 months was off everything - including, after a while, a lot of non-rheum meds for other health problems I have - due to persistently abnormal ALT and AST. Rheum checked me for all the liver related autoimmune possibilities, and one other blood result also came back wonky enough that they referred me to hepatology. In the meantime, it was agreed that the liver results meant it was appropriate to move on to biologics without trying a third DMARD (to officially ‘fail’ DMARDS, unless there is a comorbidity like liver issues the guidelines state you need to try 3), however they couldn’t actually go ahead and start me on it without the hep review, and they weren’t keen on giving me steroids to tide me over as these can also effect the liver. I can’t say it’s been anything other than 8 months of arthritis hell at this point.
The good news is that by the time I got to hep in September, my bloods had finally come back to just within normal. I’ve had a couple of specialist scans and they were normal, and I finally started on Imraldi 6 weeks ago. I’ve also been able to gradually reintroduce the other meds that were stopped, the only caveat being blood tests a month after each one to make sure that my liver isn’t getting irritated again. When discussing the situation with both my rheum and hep, they both said that where it’s irritation from medication, stopping the culprit is usually enough to bring levels back down without permanent injury. In my case, they think the issue was actually a combination of the lef and a statin, which is why stopping the lef didn’t solve the problem and they were more concerned. It was only after the statin (and any other liver heavy meds I take) was also stopped in May that we finally started to see my levels head back down, and it took until August to be back within normal.
As someone else has said, your husband has a lot going on. Whilst many of the biologics are ‘liver-light’, so to speak, it is worth bearing in mind that some have an increased incidence of malignancy so that may be a specific factor in this situation. I’m not remotely medically qualified, but my understanding is that JAK inhibitors are much better than anti-tnf drugs in that regard, although the issue is more with solid state tumours.
Thank you so much Charlie_G for replying in such detail. I am sorry that you too have had a tough time. It is reassurring to hear that your liver did settle down. The information is so helpful. It can be so hard finding out what the possibilities are. Whilst doctors are mainly good they don't understand what it is like for the patient on the receiving end left in limbo.
The Rheumatology nurse phoned back to say she had talked to the Doctor. He is to stay off the methotrexate, go back to the lower dose ciclosporin, and have a steroid injection. Followed up by further blood tests and an appointment with rheumatologist.
My husband has booked an appointment with the GP - yeah Face to Face! As he said to the receptionist, receiving an injection over the phone is difficult.
Glad they’ve got a plan for him, as that’s definitely half the battle in the short term. The worries about my liver and what might be going on were only compounded for me by not having any kind of plan, and my arthritis just being left to go mad for months on end without anything at all to help. From what I now know, abnormal enzyme results are actually really commonplace, and in many cases very quickly go back to normal when you stop what’s causing the issue. They also aren’t generally concerned by ‘mild’ elevations, which is deemed to be up to 3 times the upper limit of normal, and take a watch and wait approach with anything below that whilst often continuing treatment. I had fortnightly blood tests for about 6 weeks after the first abnormal result; had my ALT fallen to below 3 times the upper limit of normal within the first couple of weeks, they would have been happy to put me back on low dose lef, and with weekly blood monitoring resume the original plan to try sulfa. Unfortunately, because it wasn’t just the lef causing the problem, my levels were actually even higher at 6 weeks, which was when they started taking me off everything else non-rheum they possibly could, as well as doing all the autoimmune tests and arranging an ultrasound.
Anyway. Fingers crossed that repeat bloods show things coming down. Your comment about the face to face made me laugh; be a bloomin’ big needle otherwise! 🤦♂️😂
The liver is a remarkable organ as it has a huge capacity for self-repair. And things like being a touch dehydrated can mess with results of kidney tests - why they often need to be repeated to check there is actually an issue.
So try to be patient and just know that there are now a lot of different drug possibilities. Hopefully one will be just right for him.
Sorry I am unable to give you any further info, I had to stop MTX due to very bad side effects. My Rheumy didn't suggest injections instead of tablet form probably due to the side effects were so severe. Good luck I hope your Rheumy sort out your meds. Take care, Sue
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