crohns-methotrexate

[jasbola]

Anyone had methotrexate to treat their crohns?  My sister has had crohns 20 plus years-2 bowel resection, multiple relapses and failed infliximab treatment her docs are now discussing methotrexate any experience/information with this treatment welcome.

[lizziecee]

Hi, yes,yes,yes!!! Methotrexate has been my saviour.  I was dx at 24 yrs in 1970 - it was such an unkown disease then.  I figure I have had every med for Crohn's except infliximab, which my very bright gastro will not prescribe as I also have psoriasis and breast cancer.

I started mtx some 6-7 yrs ago after I read about it on the internet. It is still not licensed for Crohn's in England,where I live,  as there are not sufficient patients to warrant the drug company paying for the licence but it can be prescribed off licence by a consultant gastro.  I am one tenacious gal!

I have done exceedingly well on mtx , although it can be very toxic to the liver and bone marrow. At the start, I had to have blood tests each week for about 3 months I think, then every 2 weeks, and now monthly. I used to have severe rectal haemorrhages that put me in the ER many times, but since taking mtx I haven't had a single bleed.

I am doing so well on it - but have had to change from oral tablets to self injected, as my diarrhea came back. My gastro said he didn't know how much of the mtx I was absorbing with the tablets, and although I was rather frightened about doing the injections myself at first, it is duck soup. Takes me less time than driving to the local GP's office or even making a cup of tea.

One thing you must do when taking mtx, is have daily folic acid - I didn't have this at the start and got macrobiotic red cells - easily sorted out with folic acid. I still have slightly enlarged MCH and MCV red cells, but my gastro is not worried.

This has truly been my life saver - my weight is back on track after losing 28 lbs when on FEC chemo for breast cancer, and I only have probems in the early morning. No pain, no blood in the stool etc.

Please tell your sister my experience and come back if you want any more information. I am happy to share my experiences - and some of them are horrendous! Mtx has sorted them all out.

Liz.

[RAWINA]

It didn't work for me. I did vomit in less than 15 minutes after the shot. good luck

[RK24]

Hi,

Thanks for replying to the request  my sister had made.

It was nice to hear how you have been getting on with Methotrexate tablets and the success you have had.

I  had an operation over 20yrs ago and had over 10 yrs of good health which you can say is quite good for a Crohn's patient. However for the last 7yrs my health has been hit and miss. I have tried various medication and the last one was inflaimab in 2006 which did not work for me. I had no option  but to  have further surgery which did not help either. I am now back to square one again and  the doctors are now trying me on Methotrexate tablets.

I started the tablets 2weeks ago but just after taking them a couple of days after I had a relaps and was taken into hospital not sure if it was the new medication or my body was already at its lowest before I started the medication.

Doctors have suggested that I carry on with the tablets and I am also taking folic acid tablets and many more hope this will work. The other option is if the tablets do not work then they will try me on the injections and I would not really like to go down this route. Not sure if I can inject myself if I had too.

With the Methotrexate tablets how long did it take before you started to feel the effects and the injects is that something you will be taking for rest of your life.

My biggest hurdle seems to be at the present time trying  to find a way that I can control Crohn's wether that be through diet or medication. Knowing exactly what I can and can not eat is a struggle my diet seems to be very restricted and I tend to be eating the same things and I am struggling to introduce different ways of cooking. I did try to see if I could find anything on crohn's web site put failed. Can you let me know if your diet contributes to Crohn's and how you have best tackled this.

I would be really gratefull if you are able to share anything that with me that may help.

Thanks for your reply .

Raj

[lizziecee]

Hi Raj,
so sorry you are having to cope with this almost unmentionable disease. I have found breast cancer so much easier to handle, as there are so many women/men with it, and many new meds. Crohn's is still classed as an orphan disease!

Wow, where to start? Hard to remember now, as it was some 7 yrs ago when I found methotrexate on the internet (some 30+ yrs on steroids have significantly depleted my bones, coupled with Arimidex for bc). I seem to remember that I got well quite quickly on the tablets, had no more ectal haemorrhages, but then 2 yrs later I got breast cancer and had to stop methotraxte to have FEC chemo. Absolute disaster as I couldn't eat any solid food and the Oncologist prescribed Fortijuice for the 4 months - I lost some 28 lbs.I even had to wear incontinence pads.

After I finished FEC chemo I went into hospital as I had significant bleeding with burst ulcers and crypt abscesses and my gastro suggested I go on to the injections.At least with injections he and I know how much mtx I am getting. I have 12.5 mg injections, weekly, compared to 25 mg tablets.  He gave me a choice: have them at the hospital, a one and a half journey by car and ferry, at the local GP's surgery, or do them myself. I had the first 2 at my GP's surgery and the nurse showed me how to do them. I was terrified at first and my lovely husband helped me sort out the needle etc. It is so easy now that I just don't even think about doing it. After all, I figured diabetics have to inject themselves twice a day, so why couldn't I do it once a week? I know I will be on methotrexate for life, but I am now 63 yrs old, so not a problem. I am not going to live forever.

I have had no problems since being on the injections, but have recently had an endoscopy and MRI which shows strictures in my small intestines, so am looking at resection.Nothing at all to do with methotrexate, just a consequence of many years of inflammation and adhesions.  But hey, after 38 yrs of Crohn's don't think I have done too badly.

Diet - oh, a minefield. I have seen numerous hospital dieticians over the years, been on a dairy free diet, tartrazine free diet, wheat free diet, etc. etc. None of them made any difference. All of the gastros I have seen (moved a lot between England and Spain) say that diet does not cause the disease, just eliminate high fibre foods.  I tend to eat a high protein diet, fish,chicken, eggs etc, with little red meat. No cereals whatsoever, and cut out all the stalks from veggies like cauliflower, broccoli, even spinach.  And, absolutely no peas or beans or sweetcorn as they are so difficult to digest. Some days I try to give my intestines a rest and just have home made veggie soup with the solids strained out. I don't eat any junk food whatsoever - chance would the thing, as we live in an isolated Fort miles from a fast food outlet. Try and keep fat content down too, as this makes your stools float.

Don't know really what else I can say except that methotrexate is highly toxic to the liver and not everyone can tolerate it. My gastro is amazed I have been on it for 7 yrs now with no adverse effects to my liver (I have monthly blood tests), and I probably drink too much white wine!

Hope this post has been helpful. If you want to contact me privately, I can be reached at: ***@****  I will be more than happy to help with any further queries you have.

Good luck and take care.
Liz.

[lizziecee]

See that my email address hasn't got through ...try this
tedarkat.aol.com - put the ampersand where the at is.
Liz.