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methotrexate experiences please...

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Crohn's Disease
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Posted 4/14/2015 12:58 AM (GMT 0)
Hi all. It has been quite a while since I last posted. I am currently week 14 on Entyvio. Initially it really helped me as I was in a horrific flare that started this past August. I saw a great improvement in some of my symptoms and was so positive and optimistic that Entyvio could put me in remission. At some point my Dr. added 6mp to the mix, but after about 1 month I had to stop it due to extreme nausea, loss of appetite & elevated liver enzymes.

Which leads to my current status. It seems that I might have reached a plateau & Entyvio is not getting me to where I need to be.
My Dr. wants to add Methotrexate injections to the mix.

I would truly appreciate your experiences in this matter.
Thanks!!!
Posted 4/14/2015 1:13 AM (GMT 0)
I've been on the pill form for a few months. I started off on a really low dose (5mg) once a week. Now I'm at 10 mg once a week. I'm tolerating it very well actually. At first I had a little nausea the next day and some tiredness. I really don't notice anything now. I also reacted badly to Imuran, pancreatitis, inflamed liver etc.. My blood work has looked good on Methotrexate so far. I'm also taking Folic Acid every day, I think it really helps with any side effects too.
Posted 4/14/2015 2:09 AM (GMT 0)
Sounds like I'm in the same boat. I just finished up my 5th infusion of Entyvio and have been on 10mg oral methotrexate the whole time. I had an MR Enterography last week that showed slight improvement ( shorter segment affected) from 6 months ago but still significant inflammation in the jejunum. My dr now wants me to increase methotrexate to 25 mg infusions weekly. I'm not sure I like this plan. I feel like we should give the Entyvio another 6 months. The oral methotrexate has given me the same side effects. A headache and fatigue the next dat, but tolerable. I too am on Folic Acid. I am nervous about another higher dose of meth. I wish I knew how successful Entyvio is for crohns of jejunum. I had my terminal ileum resection 4 yrs ago and no disease there now.
Posted 4/14/2015 3:08 AM (GMT 0)
Thanks so much for your replies!! My Dr. will also be putting me on folic acid.

I wonder why my Dr. spoke only about injecting this med. He didn't even mention the oral form of it. Jen are you still increasing the weekly dose as time goes on? With the injections, he wants me to start with .4cc then each week go up an additional .2 cc...so eventually I will be injecting 1.0 cc which I believe is equivalent to a 25 mg dose.

CMom, yes just like you I completed the #5 infusion. I will be having a sigmoid this week to see exactly how much of an impact Entyvio had on my colon. I feel extreme trepidation going on this drug...but then I guess I don't have many more options left.

Besides the side effects, could any one tell me if it actually helped their symptoms of Crohns disease itself??
Posted 4/14/2015 3:56 AM (GMT 0)
I don't think he plans on raising it beyond the 10mg. Although he might just be waiting to see how I'm responding to the medications. So far I'm doing really well. I'm not sure though if it's the Remicade or the Methotrexate or both. I'm actually have regular normal bowel movements, which is new for me. lol Still having some joint pain and would like to see my energy return a bit more. But I'll take any improvement I can get. The real test of course will be seeing how I feel after I wean off steroids completely. But this has been the best I've done in a long time, steroids included.

The other thing my doctor said he only wanted me on the methotrexate for about 6 months. Like he's just trying to induce remission then hold it with only Remicade. Not sure how I feel about that yet. If it does end up all working, I may not want to mess with it. But I have read it's not a good thing to be on long term.

As far as oral/shot. I have heard that some people do better with the shot (so it's not hitting the stomach which wouldn't help for nausea). I was kind of bummed that it was oral when he first gave it to me, as I hate nausea! But so far so good *knock on wood*.
Posted 4/14/2015 12:50 PM (GMT 0)
I feel like the pain has gotten better with Entyvio, but that at about 6 weeks in I have more symptoms. Like I don't make it the full 8 weeks. My problem was not diarrhea going into this treatment. It was more lack of appetite, weight loss, nausea and pain. I tend to lean more on the constipated side. Honestly, I felt like I could deal with my symptoms and was resistant to Entyvio, but sort of got the ultimatum from several Drs that we need to treat aggressively. Seems Crohns of the jejunum is not as common and the inflammation was severe and lengthy. Weird that I don't/didn't feel worse, but I think I've always been pretty pain tolerant. I also had severe anemia and received iron infusions that I haven't had to have in 6-8 months so I think it's working. Which brings me back to the point of why do we need to increase the methotrexate if things
Are a bit better?
My dr says beyond 10 mg he always prescribes injectable meth because of the side effects (nausea, low appetite) that oral gives.
Posted 4/14/2015 1:13 PM (GMT 0)
I was on methotrexate injections about a year and a half ago. I could only tolerate it for about 5 weeks. While I was on folic acid and given Zofran for nausea, the side effects were pretty intolerable - nausea, loss of appetite, extreme fatigue. It didn't help with any Crohn's symptoms either. I didn't do well with 6-MP or Imuran either. I believe injections are usually given for Crohn's patients instead of pills for two reasons. First, the side effects are supposedly worse with the pills. Second, Crohn's patients could have absorption issues with the pills. The one thing I will say is it was the most painless injection ever - way better than Humira or Cimzia. I barely felt it.
Posted 4/14/2015 4:50 PM (GMT 0)
I'm afraid to say that I was not successful in my experience w MTX, too. I took it for 19 weeks 4 years ago. I started off w tablets but couldn't tolerate them coz of nausea and vomiting. So, my GI switched me to the 25mg injection. Despite Zofran injections pre and post the MTX injection, I couldn't tolerate the nausea. This is maybe coz I have long-standing GERD and gastritis. The injections didn't put my Crohn's at bay, so I was taken off them then.
Posted 4/15/2015 3:23 AM (GMT 0)
Thanks again so much for all your replies. My Dr. did write me a script for Zofran. Still so not sure about this next step.....

It seems that the consensus is that it does cause extreme nausea, loss of appetite & extreme fatigue...

If I do end up injecting, thanks Bania for the info on the injections. I do know that the needles are extremely thin. I too found the Humira injections quite painful but I tolerated it & it helped me for 7 years.

Will see what my sig scope says & then have a further discussion with my Dr.
Posted 4/15/2015 5:07 AM (GMT 0)
I think I need to talk to my doctor about the injection form. I am worried about the absorption issue. When he first talked about putting me on it I asked if it was an injection, he seemed surprised by my question. Like of course it would be oral. Hmm Although I am also worried about going up to 25 mg. I do pretty well at 10mg, but that seems rather low next to what a lot of you have taken. I tend to think that probably has a lot do with the side effects. I think I freaked him out when I asked about pancreatitis an methotrexate. After my Imuran experience it's one of the first things I tend to ask about now. lol That's probably why he started me so on such a low dose. Not that it would cause pancreatitis, but because I'm freaked about bad reactions now!

Nausea has always been one of my big Crohn's symptoms too. It's hard to tell what causes it for me. If it's the medications, because I know when I'm tapering steroids I get nauseated a lot too. Then once I'm off I know it's the Crohn's, no appetite and nauseous. All just so much fun!
Posted 4/15/2015 6:21 PM (GMT 0)
I've read that nausea is worse with oral methotrexate than with the injectable form. I was on 25mg injectable methotrexate for a few months. The side effects weren't bad: I would feel a bit rough the day after the injection, but that was about it. However, it didn't work. To be fair, by that point I'd already been on Remicade and had that fail on me. If I'd taken it a few years earlier, it might have been a different story, but I got on the strong stuff way too late in my disease course for it to make any difference: my colon was beyond saving.
Posted 4/16/2015 2:02 AM (GMT 0)
I am on Entyvio. after the third inf. it was nt doing much so we added the MTX 25mg/1ml inj. Slowly but steadily things have improved
Had some side effects on he 25 mg dose.
Doc said split it into 2bi weekly doses I also changed inj site ti thighs vs abdomen.after that minimal side effects mostly fatigue but after a few mos I could tell it was affecting my liver. That's when we reduced it to 15 mg. been smooth since and still improving.
Watch for signs of liver problems - hepatitis like symptoms, fatigue that gets worse, dry scaly skin, jaundice, brown pee, high bilirubin ct.
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