Did Methotrexate work for you?

[gillmc]

Hello all

Just back from seeing my GI, he said my platelets are high from the blood test I had 3 weeks ago. I have been having flares since May this year with no meds (Entocort course finished and Mercaptopurine was stopped through choice by me as had no effect) . He said my Crohns is 'grumbling' just now

My GI handed me a leaflet on Methotrexate and asked me to consider it, and if I decide to go ahead with it I need to speak to my GP. If I want to wait and find out the results of the x-ray he has booked then that's fine too.

What I want to know is has anyone had any experience with this medication and did it work?

Thanks

 

[KWalker]

I did methotrexate in both oral and injection form. I would personally opt for the injections because my doctor told me that the pills would give side effects during digestion (flu-like symptoms) and I did get them. Actually, I personally got them so bad that I had to take the pill on Saturday morning and my weekends were useless because of it because I had to spend the weekends feeling like crap in bed.

After awhile I switched to injections and I did them myself in the top of my leg. The needle you use is pretty small and painless for the most part. For me, the injections were more effective, because I think I was on a higher dose but it also by-passed the symptoms that come with digesting the oral pills.

The most common side effect I had was headaches, but even those were nothing to cause much harm. A few issues I had while on Methotrexate however were night sweats occasionally as well as mouth ulcers. There's no 100% distinction as to what caused them or if it was just a coincidence, but the problems did go away after I stopped.

Personal opinion, I would take Methotrexate again over going back on Humira, Remicade, Imuran, etc.

 

[Misty-Eyed]

Yes, I started it as the injection and moved on to the tablets. It worked wonderfully for me for quite a long time. But then it started damaging my liver so came off it They do regular blood tests to look for this though and if it does effect your liver, it goes back to normal after being off it for a while.

 

[SarahBear]

It worked well for me. I did the injections, and like KWalker said, it's pretty easy and painless. The needles they gave me were actually the smallest needles available. When doing it myself, I injected into my thigh, but it's supposed to hurt even less if you inject into the stomach.

I didn't seem to have any side effects, but as I started it when I was on Prednisone, it's possible that I had some mild ones that just went unnoticed.

As Misty-Eyed said, it can cause liver damage but it's really nothing to worry about as long as your doctor is monitoring it. I had blood tests done weekly for the first month, then every other week, and then once a month.

Personally, I'd really like to get back on methotrexate but my current GI won't prescribe it because he says there's no need for that strong of a medication right now.

 

[KWalker]

you know, I actually didn't have any blood tests with mine. They only did blood for the first two times when I had to go to a clinic to do it and they showed me that. I went atleast a year with no bloods at all. Not saying to ever do this, but makes me safe to know my doctor didn't keep monitoring...

 

[Misty-Eyed]

Wow REALLY??? I had to have a methotrexate card with my blood test results on it and had to show it to the pharmacist every time I got my prescription!! I think I was supposed to have one a month. Good job I did really...

Also I never did my injections myself. I had them done at the hospital once a week by the IBD nurses. Not forgetting the folic acid the next day to minimise the side effects.

 

[SarahBear]

Oh, yeah, make sure they give you folic acid! Methotrexate depletes folate.

Misty-Eyed, did you take it only the day after? I had little tiny folic acid pills that I was supposed to take daily.

 

[KWalker]

yeah I never got any of that! Definitely get bloodwork and the folic acid

 

[Clash]

Methotrexate seems to be working well for my son, 16. We just added it recently as Remicade was doing the job, he also has blood work, but now every six weeks. He takes folic acid every day and 10 methotrexate pills on Friday. He has experienced no side effects as of yet and he has been on it over 2 months. Since starting MTX he has had no CD symptoms at all(touch wood) so hoping it continues.

 

[Misty-Eyed]

Oh, yeah, make sure they give you folic acid! Methotrexate depletes folate.

Misty-Eyed, did you take it only the day after? I had little tiny folic acid pills that I was supposed to take daily.

Even the day that you had the methotrexate? I got told it worked best the day after and not to have it on the same day. It wasn't what I'd call a small dose though. Definitely more than say is recommended for a pregnant lady.

 

[SarahBear]

Every day! Small doses, though. I can't remember how much, exactly.

 

[Misty-Eyed]

I thought it was dangerous to take on the same day so just looked it up and found this;
http://www.bsg.org.uk/pdf_word_docs/meth_ibd_dr.doc

Weird how different doctors prescribe things!

 

[SarahBear]

Hmmm, maybe my doctor wasn't too concerned about me, either.

On a lighter note, that document downloaded as "meth_ibd_dr-1." My boss is going to look at the downloads on my computer and think I'm making meth or something, haha.

 

[Jmrogers4]

The short while my son was on methotrexate it did wonders controlling the crohn's unfortunately he developed a horrible bronchial cough and they were worried about lung scarring. He did have regular bloodwork on it to check liver function. We did not do folic while on it. He took pills and usually on Friday night as we were worried about side effects but nothing other then the cough. Best of luck to you and hope they get you to feeling better.

 

[Misty-Eyed]

Hmmm, maybe my doctor wasn't too concerned about me, either.

On a lighter note, that document downloaded as "meth_ibd_dr-1." My boss is going to look at the downloads on my computer and think I'm making meth or something, haha.

Hahaha I thought that when I saw the name of the doc!! Not the best abbreviation!

 

[ron50]

Hi,
I have had ibs most of my life(62 now). It went mostly untreated,most of my doctors considered it like chronic fatigue,all in my mind. It ceased to be all in my mind at age 48 when it had turned to bowel ca. I had most of my transverse and descending colon removed.It was into six lymph nodes and things looked grim for a while. I had a year of chemo including levamisole which was banned in 2000 for fatal side effects ,. Since then I have had pancreatitis and lost my gall bladder ,auto immune psoriatic arthritis and some crap auto immune disease of the kidneys that makes me lose over 3 gramms of protein a day thru my kidneys. I put in a horror 18 mos on 75mg a day of prednisone,the 18 mos included weaning off it. I don't know how I didn't kill myself,I had the moon face ,hump back watery eyes ,bleeding patches on the skin and constant ulcers in the stomach and duodeum. I tried sulfasalazine and arava which nearly totaled my liver and was eventually put on methotrexate. Iwas on it for nearly two years off and on. I injected once a week. it was easy I used small insulin syringes in my stomach. I took megafol for two days and my doc even gave me a preasciption for leucovorin(he was an ex oncologist). My problem was consant diarrheah ,6-10 times a day and i went off meth. After a year on nothing ,I refused to go on cyclophospormide, My kidneys are close to 4 gr a day and I have been dxed with pulmonary oedeema and congestive heart failure. I have found that my diarrheah is not medication caused,it exagerates it but the main cause was the loss of my gall bladder. At least ten percent of people who lose their gall suffer chronic D. I am treating it with Questran lite and now i go once or twice a day. I am going to ask to go back on methotrexate. When I was on it my protein loss was down to .075 of a gram per day plus it helped with the psoriatic arthritis. the only side effects were some nausea ,it made my neuropathy worse,I was extremely sun sensitive and developed some nasty skin ca. I worry about all of the immuno-suppressants because I have had cancer but there is nothing worse than waking at night totally unable to get oxygen and the nightmares that wake you. I am on lasik to try to get rid of the fluid round my heart and lungs but It is not helping very much. the sooner I am back on methotrexate the better. Ps It never effected my liver... Ron.

 

[Scaryman]

I'm having so many complications with MTX and Humira so I'm not sure if I can answer that. I do know that things are coming too ahead because I'm prednisone dependent.

 

[Spooky1]

Didn't work for me unfortunately.

 

[ron50]

I have been off all immuno -suppressants for over a year. The past two weeks I have seen my nephrologist and my rheumatologist(today). I am losing way to much protein thru my urine,now over 4grams a day,in the nephrotic range. My psoriatic arthritis is getting unbearable. I had a good talk with the rheumy today. If it was just the arthritis and in particular ,psoriatic, he would go for humira but humira has a poor track record with inflammatory kidney disease. So it is back on a 20mg weekly dose of methotrexate .8 ml via injection. I will start on10mg// .4ml for 4 weeks then onto the main dose. One of my main side effects before was diahorreah. The questran now has that well under control so it may make taking the mtx a lot easier.. Ron.

 

[Scaryman]

I have been off all immuno -suppressants for over a year. The past two weeks I have seen my nephrologist and my rheumatologist(today). I am losing way to much protein thru my urine,now over 4grams a day,in the nephrotic range. My psoriatic arthritis is getting unbearable. I had a good talk with the rheumy today. If it was just the arthritis and in particular ,psoriatic, he would go for humira but humira has a poor track record with inflammatory kidney disease. So it is back on a 20mg weekly dose of methotrexate .8 ml via injection. I will start on10mg// .4ml for 4 weeks then onto the main dose. One of my main side effects before was diahorreah. The questran now has that well under control so it may make taking the mtx a lot easier.. Ron.

In my case, I was advised to take MTX with Humira. I started off with oral pills to see if I can tolerate it. After 3 weeks I started out with 12.5 injections, then tried that for a week, then I was bumped up to 25mg once a week. After 1 month of MTX in my system to prepare for Humira I started my loading doses.

The reason that one of the best teams put me on MTX to begin with is I am a former Remicadee patient/reject- .

So the Explanation for me being on MTX is two fold; Patients who have had reactions to Infliximab (Remicadee) may not have a reaction to Humira, given the latter anti-TNF agent is fully humanized. The reaction is thought to be due to antibody response to the the anti-biologic agent being used. In this case the addition of methotrexate is being used more so for the curtailing of the antibody response in conjunction with its anti-inflammatory effects. Thus it increases Humira effectiveness by 30% based on clinical trials/studies. So in a sense its more bang for the buck.:biggrin:

I really hope it works for you, if you have had issues with it in the past try going slower and lower doses at first? As always let me know if this helps.

 

[ron50]

Update,this time the methotrexate is doing nothing good. I have had a major flare in the severity of my neuropathy. My feet and legs have been burning of a night and disrupting my sleep. My left hand has become virtually useless. I believe my neuropathy was originally caused by chemo therapy. mtx is another chemo agent and it seems to be the cause of the flare. I have changed no other meds. The first time I tried mtx I had problems with neuropathy but I did not link it to the drug. It is having some serious effects on my life. I am having trouble working with no feeling in my left hand and two nights ago I had a serious fall because of my feet lacking feeling. It jarred my whole body and it quite upset me. It becomes a bit scary when you can't trust your body.Ron.

 

[Spooky1]

I had issues with mtx. No point in taking something that gives side effects and isn't helping the crohns.

 

[ron50]

My rheumatologist agrees ,no more mtx. He went back thru records , seems he has a note from my first time on mtx that I suffered a flare in neuropathy. He has given me a referral to a neurologist. He has decided not to try any more drugs until they get an answer on the neuropathy. More money down the drain. Ron.