Long term Methotrexate use

[Radnor]

Has anyone else had there liver damaged by this drug? I was on it for 7 years, had regular tests and 2 fibro scans. I have severe psoriasis and psoriatic arthritis. I stoped treatment in January so I wondered if anyone has stopped and their liver improved? Told I had severe liver fibrosis, none drinker.

[Hidden]

Hi. My husband has been on it for a year for PMR and has fortnightly blood tests. Several months ago a blood test revealed it was affecting his liver function so was taken off it until blood tests showed it had recovered. He now injects the methotrexate rather than taking it orally and has had no problem since. May be worth you discussing this option with your specialist. All the best.

Laura

[Radnor in reply to Hidden]

I was on injections, it is still a very toxic drug and if someone has liver problems it is contra indicated. My cousin is on it for RA , I keep reminding her of whats happened to me. I realise Im one of the unlucky ones. It worked brilliantly well on my skin and my joints. I had regular bloods done under a Prof. My bloods look normal now so not a reliable way of indicating damage. I have received funding now for another medication, Aricept. I checked first it doesnt affect the liver, but it can affect kidneys. It may be prudent for your husband to ask for a fibro scan? A member on here had just a fatty liver, 4 weeks later he was admitted and diagnosed with Cirrhosis. Hope you dont think Im scaremongering, but blood tests don't give the whole picture. I was on tablets years ago but they didnt agree with me. The injections dont have any bad side effects, at the beginning I felt yuk the day after injection. Even this subsided, My first fibro scan showed I had a fatty liver. 2nd one showed I had reduced this by 25% due to losing weight. I was told in the January how my liver had deteriorated , I was clueless about fibrosis. I'm not now. If I had realised I would have asked for a liver specialist to be involved. from the beginning. Truly hope your husband is not affected lie me x

[Hidden in reply to Radnor]

I know it can have very severe side effects as it is a cancer drug after all. But as my husband says he is relatively pain free and can live a perfectly normal life, still able to do his very stressful job as a motorcycle instructor which he loves and long walks with our dog. Without it the PMR would cripple him and possible kill him. It's definately the lesser of the 2 evils for his condition. He has a healthy diet and no alcohol. His fibroscan showed no damage and regular scans are arranged. He is being very well monitored and treated at the Norfolk and Norwich hospital. No complaints about his care at all.

X

[Thistle09 in reply to Hidden]

Laura, your note and a slight reference to cirrhosis within a recent article about skin conditions rang a bell. I have been dealing with peeling skin on my face, for several months. Lovely. Have yet to get to a dermatologist, but I have managed to make the peeling disappear with liberal applications of aloe Vera gel several times per day, but it keeps coming back. Will let you know what happens at the dermatologist. Yikes. I'm not sure I can inject myself ...

[Bermuda1]

Yes I have come across a few people who have had significant problems due to taling this . Its a difficult one , as for some it seems to be a choice between the devil and the deep blue sea.

[Radnor in reply to Bermuda1]

Definitely, in spite of all the regular blood tests too, so bloods alone dont shw the state of the liver I suspect.

[Nannychoc]

Hi, I took methotrexate for a few years. First by tablets but they didn't agree with me, I kept developing sores in my mouth and I had stomach upsets. I was then put on the injections alongside Leflunamide tablets.

I had monthly blood tests. My liver function was shown to be decreased and I also developed problems with low platelets and I became increasingly unwell. I was sent to a haematologist who arranged tests including a bone marrow biopsy. My health continued to deteriorate, I lost a lot of weight because I was continuously nauseous and vomiting. Meanwhile, my liver continued to deteriorate and I was firstly told that I had nafld. This diagnosis changed to Nash and I was booked in for a fibroscan, I came away with a score of 25.

My bone marrow results came back and I was told that I had methotrexate induced bone marrow failure. I was taken off the methotrexate and Leflunamide and it was replaced with Etanacept.

Meanwhile, I had a liver biopsy which confirmed that I had liver cirrhosis. I had further scans and I was told that I have also got an enlarged spleen and portal hypertension.

I wouldn't recommend methotrexate to anyone, I think it is a nasty drug and you are given it at first because it is the cheapest option. I was prescribed it for psoriatic arthritis. I would strongly recommend that anyone currently on methotrexate should speak to their doctor and discuss alternative drugs.

[Radnor in reply to Nannychoc]

You sound in a worse state than me, I see my GP tomorrow and want to see a liver specialist. ! I totally agree with you too. It was dermatology that asked for me to be checked over.after 6 years of use. He did not see me afterwards and no one has explained very much about the true state of my liver. It was definitely not cost related at all. I volunteered for the trial because as you will already know we really need something to help with both psoriasis and the arthritis. I realised I was on the drug as because a} I could taste it after injecting and b} my skin was improving.it was Etanercept. I should then have been on it for 6 months open trial. However it seems my body was reacting, I developed a large blister on my throat and felt extremely weak. The Prof I was under said to test me for mono? Epstein Barr Virus common name Glandular Fever. . I even joked saying I had not been kissing teenagers, I was 49. The results were positive. I was drained of energy. I had to go off work and after a year I tried to return. I asked to do part time but even this was exhausting.I was diagnosed with ME and fibromyalgia. 3 years later and my skin was on overdrive. No one else was affected like me, over 800 people world wide. so it was put down to a coincidence. I got approval for funding and coudnt wait to get started. Injection 1, I felt off colour and even more exhausted . I took injection 2 four days later.I could not speak, had to wear earplugs and eye mask, I could not eat or drink and could just manage to crawl to the bathroom a couple of times! I was bedridden.It felt like my body was shutting down and was frightening too. After 6 weeks like this I found the strength to see my dermatolgy team. Cytokine release syndrome was the diagnosis and I felt lucky to be alive, as it can be fatal. I had to finish work totally , from a well paid career. I stopped the metho in January this year and have had no treatment for either my skin or joints. I was given the information on Ariscept and Im just awaiting delivery to start using it. I did ask first if it impacted on the liver. Both our auto immune systems are compromised so its going to be trial and error. The EBV did make me intolerant of alcohol, even the smell, so thank God it did. I wasnt a big drinker so know that the damage is from Metho. I will mention my bone marrow too when I see the specialist, you have been a great help Hazelx

[mncold]

Hi Radnor,

Our next door neighbor has been told she has liver problems after taking methotrexate for her RA.

Wishing you the best in the future.

Mary

[Radnor]

Thank you.I empathise with your neighbour. It is all the more shocking because I have no symptoms at all! I am beginingg to wonder if there is under reporting of this,

[Radnor]

It is less likely in RA patients from what I have discovered, but it says on all literature that 2 to 3 % will get liver disease and higher risk of liver cancer. I was on injections. In 3 years I have progressed from fatty liver to NASH. I came off it last January. My bloods were checked every 3 months and were normal. I had one incidence of abdominal upper right. This resolved its self I was dehydrated and constipated. Dermatologist asked Gastrologist to advice if it was safe to stay on it. Definite NO. In 3 fibroscans in 3 years I was told in December I had cirrhosis. My cousin is on it for RA and I have told her whats happened to me. I have severe reactions to some meds, particularly those connected to my immune system I wont be surprised if they say I have autoimmune hepatitis in the future. My psoriasis is on overdrive at present but I am putting my liver first. Psoriasis and psoriatic arthritis are both thought to be down to immune systems! You ned to discuss this with a liver specialist. Metho is cheap but there are new drugs available for psoriasis and I imagine its the same for RA? Its important that they liase re your treatment. I had no idea fibrosis was serious. found out when I tried to get holiday insurance!!! My immune system is very fussy, even the new meds cause a major revolt! Hope you manage to find a replacement drug as RA is evil. Low carbs is the diet I have been advised to follow. This burns fatand it reduces liver fat. I can see you dont have a weight prroblem but fatty liver can affect the slender as well as chubbies. I was told by a liver prof, if I follow a low carb way, he will expect me to still be around in 20 years. He also said that psoriasis alone can cause fibrosis. My middle name is not Lucky lol Hazelx

[Radnor]

The main thing to do is keep a positive attitude. That seems to be what the majority on here have in common apart from a wide range of liver problems. Take notes with you when you go . The liver is a complex organ, due to the massive amount of functions it provised us with. My daughter came with me, I am confident but it helps to have an extra pair of ears . Ask to be copied in to any letters he/she sends to your Dr and ensure you take the Rheumatologists info. I asked my GP to refer me to Liverpool Royal, they have a dedicated Liver Centre. No waiting for fibroscans, I had one before seeing consultant. All good wishes, you will be in the right hands now, thats the important bit. Hx

[FuzzyWasShe]

Wow! I am so sorry you've had to go through all that, Hazel! I didn't ever do long-term, low-dose methotrexate, but when I had osteosarcoma 12 years ago, high-dose methotrexate was one of the three chemo drugs I was given, over the course of nine months. (The other two were adriamycin, a.k.a. doxyrubicin, and cisplatin. So between the three chemo drugs, I'm at higher risk for heart damage, lung damage, kidney damage, liver damage, osteoporosis, and skin cancer. And I have hearing damage, thanks to the cisplatin. Oh joy!)

As far as I know, I don't have any permanent liver damage from the methotrexate, but with all that my mom has been going through, I do confess that my hypochondriac self is beginning to make an appearance again! Thankfully, it at least looks like the chances of my liver being damaged is lower with the shorter-term high doses than it would've been with long-term low doses. But methotrexate is horrid stuff, for sure!

[Radnor]

No way are you a hypochondriac Cancer causes some serious worries, even when its cleared there are still concerns in the back of your mind. One of my friends battled for 5 years. Got her 5 year survivir badge but I recognised she had PTSD. It can occur after such a fight, Any GP worth his salt should realise this. I think everyone on here is far more aware of their well being than people who feel ok for now. At least we know what we need to do to keep well. A number of cancer fighting drugs are also prescribed for psoriasis. Pity we cant get a new immune system - Maybe in the future eh? Re set it to work properly. So many of us on here dont just have liver problems, I am under 5 different specialists. All justified so anyone thinks Im a hypochondriac is welcome to accompany me lol. x

[Woodystar]

For all of you here that has worries over taking methotrexate please have a look at Low Dose Naltrexone. Me and my sister both have the same chronic and genetic health and issues and over active immune systems causing inflammation. My sister has been on methotrexate for a couple of years now and I instead opted for the LDN for the pain and inflammation. LDN is an immune modulater, my sisters health has now deteriorated much more than mine and my Liver health and enzymes is improving if anything.