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Hannah
11-06-2014, 11:22 PM
Hi,
This is my first post--I'll have to go back and do my introduction post! I was diagnosed with WG back in March, but had vasculitis issues in the past. I was on Methotrexate for the second time in my life from March-August. I was told to stop after my liver count was high, and referred to a GI doctor. I go to the GI doctor 3 weeks ago and they send me to the lab to be tested for several different types of hepatitis and to make sure my liver counts are still high. Yesterday, I got an overview of my results. My liver count is still high and I get to have a liver biopsy (2nd biopsy this year--had a kidney biopsy in July). My doctor also suspects Crohn's or Celiac because she says that liver problems come with years of Methotrexate use, not months. Now, there are three things about my diet: (1) I'm vegetarian, and I take iron supplements, (2) I love me some gluten, and (3) Spicy food is my favorite and doesn't cause me problems. Celiac and Crohn's? I don't know where this is coming from. She seems to think the Methotrexate didn't cause the liver problems, but liver problems is one of the issues that does not run in my family, and I have no known GI problems.

I was on 20 MG (8 pills 1/wk) of Methotrexate, which got bumped up to .6 injectible Mx, then bumped up to 1 ML Mx before I was cut off. I had been on Mx back in 2006 for about a year, taking the 20 MG dose with no found liver issues. I took folic acid both times and continue to take it in hopes that it will do something to help my liver.

Basically my question is, is she correct that Mx should not have caused my liver enzymes to be high? She doesn't seem to know what else could be causing it. I'm having a liver biopsy and an ultrasound next week to see what's going on with my liver.

Thanks for your help. I wish I could be more positive to make a better first impression, but I'm just really frustrated by this process. I've been lucky to have mild problems due to WG, but having to have two biopsies in one year in addition to all the other regular bloodwork and medication I take just wears me down. Thanks in advance for your help.

Alias
11-07-2014, 12:27 AM
Hi Hannah, I read this post as well as your introduction. Sorry you are having to deal with all this at such a young age, but it sounds like you are already a pro at dealing with the docs, the meds, and being a human pincushion. I have been on MTX injections for about nine months. I experienced a gradual increase in liver enzymes until they spiked to a bit over twice normal. My rheumatologist reduced my MTX dosage temporarily and added a drug called leucovorin, which is supposed to offset hepatotoxic effects of chemotherapy drugs. My enzymes promptly returned to just above the normal range, MTX was increased to just slightly less than the original dose, and my labs have been good since then. I had no liver issues prior to MTX and my docs seemed to have no doubt that this was the cause of the rise in enzymes. Perhaps it depends on how high your numbers are and what other tests they are relying on, but I can definitely say that short term use of injected MTX can send up some red flags in your lab work.

mishb
11-07-2014, 08:54 AM
Hi Hannah,

I replied on your other thread and below is part of the response.

I had liver issues for a couple of months a year or so back. I am also on MTX.
What we found (by powers of deduction) were that the multi vitamins that I had started taking, were affecting my liver.
I stopped the multi vitamins for a month, had another blood test, and the results were much better.
I have not taken multi vitamins again.

I'm not saying that it will be because of multi vitamins (or something, maybe one thing within the vitamins) that is affecting your liver, but just that it is not always because of MTX.
Just a thought.


I also agree with Tom, that MTX can definitely cause liver issues from the time you start taking it. This is one of the reasons that they check your blood so often

miracleshappen08
11-09-2014, 02:37 AM
MTX will cause liver problems!! I have been on 25mg a week for 3 years and now this year have started the injections. So far my liver has been ok. But it checked a lot!!! My numbers do go up and when they do, I'm put in the hospital and put on a 250mg of steroids every 12 hours for a long as my count is high. This is the same for kidneys. The doctors have been able to save both because of this. But it causes other problems.

I hope you can get it figured out!!


Miracles do happen!!

Wegetarian
11-10-2014, 09:40 AM
(1) I'm vegetarian, and I take iron supplements, (2) I love me some gluten, and (3) Spicy food is my favorite and doesn't cause me problems

I don't take iron, but otherwise I'm with you on 1-3. I think I like you already :D

I'm not too familiar with MTX and increased liver enzymes, but I've also been assuming that is why they require blood tests so often and why you shouldn't drink alcohol while on MTX. Was on MTX for almost a year (25mg / week) and had occasional drinks, but my liver was always fine.

keegan55
11-13-2014, 11:57 PM
Mtx can also cause kidney problems thats where I am at right now I hate all these drugs

Rose
11-14-2014, 03:22 AM
I do know that if you have existing liver problems or past liver problems, then you should not take MTX. Whilst I was receiving Cyclophosphamide IV around the time of my 4th infusion I developed drug induced hepatitis. It was caused by other drugs I was on at the time and when these were stopped my liver enzymes returned to normal though it took many months. When the time came to prescribe a drug to maintain me in remission MXT was ruled out for 2 reasons.....because I was in stage 3 CKD and because of the experience with drug induced hepatitis.

I have had some spikes in my liver enzymes a few times over the years. My rheumatoligist told me when it gets into the hundreds they worry but if it is still 2 figures not too much concern but will be monitored more closely. He advised me to take OTC Milk Thistle tabs to see if it would help, explaining to me that it seems to help in the case of raised enzymes caused by chemotherapy . I did take some and my levels came down from the 70's to just above normal in a few months. There is a lot on the net about Milk Thistle and the Liver for those on chemotherapy.

Rose

Hannah
11-14-2014, 05:45 AM
I had my biopsy yesterday. I got out of the hospital around 4:30, and went back because I was vomiting. Luckily, I didn't have to stay overnight. I had planned to go back to work today, but put in for a day off after I got sick last night. I'm supposed to call to get results in 3-5 days.

Hannah
02-06-2015, 11:45 PM
I'm bumping this up to update and ask more questions.

My liver was fine, and the GI doc approved me going back on Mtx. A few weeks of phone tag with my rheumatologist about labs and 2 Mtx treatments later, I'm told that my liver count is still high and that we need to look at other medications besides Methotrexate.

I've been trying to read old posts and research my options. My rheumy had dropped hints previously that my other options would be a super expensive drug. From what I've pieced together he may want me to go on Rituximab. I have an appointment with the nurse practitioner on Monday morning to find out for sure, but I'm trying to research before I go in.

Are there options besides Rtx? If I go on Rtx, how much work am I looking at missing? I've seen people post about weekly infusions at the beginning of treatment. I worry about missing too much work.

I realize there are lots of threads everywhere about alternatives to Mtx, but if someone could condense all this information in one place for me, that would be great!

Pete
02-07-2015, 03:47 AM
OK Hannah, here goes...

Yes rituximab is frightfully expensive at list price (US$15-$20K), but with preapproval from your insurance company, you may be able to get it for considerably less. Your doc can work on this for you. The infusions take most of a day. For most of us, the side effects were mild fatigue and maybe an allergic reaction that is quickly caught and treated during the infusion. You probably won't have any problems. Thus, you'll probably only miss work on the days of the infusions. If you can schedule them for the end of your work week, you should be good to go.

Other drugs are immuran (azathioprine) and cellcept (mofetil). You should have a TMPT test done before going on immuran to make sure your body will tolerate it. Cellcept is another maintenance drug. Both have their issues, and you can discuss these with your doc. Cytoxan (cyclophosphamide) is usually used as induction (initial) therapy to bring about a quick remission. You would then go on one of the aforementioned drugs for maintenance. Cytoxan is hard on the bladder. If you are put on this drug, make sure you take the drug with plenty of water, stay hydrated, and don't hold your urine in your bladder (go right away when you feel the need). One of cytoxan's side effects is bladder cancer. The quicker you get rid of the urine with the metabolates, the better.

You can also google these drugs to learn more about them. Hope this helps. Good luck and better health!!

miracleshappen08
02-07-2015, 04:23 AM
A year ago I got my RTX treatment. I would swear by it!!! It saved my life!!
The way they do it is every week at the same time for 4 weeks, you get a dose. It can take any where form 4-8 hours to infuse. I did not start to feel sick until my 3 treatment. At the point, I asked my doctor for meds to help with the puking.
It is very expensive, but the results and the side effects are much nicer then stronger chemo.
Hope this helps and hope you start feeling better soon.

JeanMarie
02-07-2015, 06:56 AM
I don't want to infer that this is your problem, but I can tell you for me elevated liver enzymes are a sign that a weg flare is on its way. I'm pretty sure this is a very uncommon symptom of wegs. Sonogram didn't find anything and the blood work always returned to normal shortly after treatment was started. I didn't start treatment just because of this--it was just one of the first signs & other symptoms developed quickly. Hope you find a solution soon.

im so blessed
02-07-2015, 09:22 AM
My sister was hospitalized with high liver enzymes due to tylenol.Im sure they looked into that. I hear alot of good about rituxan.

Hannah
02-10-2015, 05:34 AM
Thanks for all your input! I saw the doctor this morning, and several medications were talked about. What we ultimately decided on was one I hadn't heard of--hydroxychoroquine, or Plaquenil. It's a daily pill, so no infusions! I am going to see my eye doctor today and let him know I'm taking this medication, because one of the side effects is loss of vision. She said this medication is the safest route, and that my age was also a factor in making decisions about the medication.

mishb
02-10-2015, 08:41 AM
I have been taking plaquenil for the past 3 years, without any issues.
You do need to have your eyes checked every year.

It takes about 6 weeks to kick in, unfortunately.

Someone on here mentioned to me that sometimes it can make you feel ill but if you stick with it, this feeling will disappear within a few weeks.........if you can last that long.
If you can't last that long, then thankfully, this is one of the few drugs that you do not need to wean off - you can just stop taking them.

Best of luck Hannah - I hope they work for you