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.

[modean]

Just reading your remarks, Liz is somewhat comforting, yet daunting, at the same time. Our 8 y.o. son has been hospitalized at Maine Medical Center, Portland, ME. for the second time in 10 weeks, having had symptoms of what his MD termed 'indeterminate colitis' for over a year. Having had his third colonscopy and a second upper GI, it has finally been determined he has Crohn's. He has been treated unsuccessfully with various meds over the past year--first Asacol, then Prednisone with Asacol, then Flagyl, then Mercaptopurine (6-MP). When he developed an increase in symptoms and had to be hospitalized for pancreatitis in March, we started Infliximab (Remicaid). He has had three infusions already, is due for the fourth the first week of July, but he had the worst bout ever this past week--fever and sodium depleting, secretory diarrhea, which brought him dangerously near having to go to the ICU. At this point, he is turning the corner, but still an inpatient, on Prednisone again (20mg BID), but no long range plan in place. With the immunosuppressive drugs leaving him open to any infectious process going, and not an impressive response to Remicaid, we're really wondering where to turn next. My husband and I would so much rather take a natural approach, using "The Maker's Diet," probiotics, etc., if such were enough, but it may take a long time for that to accomplish the healing that needs to done. At his age, being nearly 5' tall and not even 70 lbs., we're concerned about the long term effects of such potent drugs. Any moms and dads out there with experience? We're probably going to seek a second opinion from Boston as soon as we can.   Beth

[lizziecee]

Hi Beth, so very sorry to hear of your son's illness - it is bad enough having Crohn's as an adult, but devastating in a young child. My heartfelt sympathies go out to you, your husband and son.

I had already replied to your other post today but not sure if it is of any help.

I do understand your desire to try a "natural approach", but the advice my doctors have always given me (and at one time I was being treated by the European specialist in Crohn's - since decamped to New Zealand, but I have an exceptional one now -youngish, early 40's who is passionate about IBD and does his research) - is that diet alone, no matter how healthy, (probiotic, macrobiotic etc.) will not keep the disease in remission, if indeed your son has the intractable kind I have.  I have seen many hospital dieticians over the years, and without exception they have said I must take immuno-suppressants, and to control the diarrhea and abdominal pain, eat a high protein (fish,eggs,cheese), low fat and low fibre diet. Protein is the most import ingredient in my diet, and when not feeling too good,I  just have home made soup, either pureed or the vegetables strained out, some creamed potatoes and poached eggs and stay clear of fats.

I did once discuss taking a probiotic drink, like Actonel, Yakult etc. with my gastro but he said: "By all means, if it makes you feel better, but you are probably wasting your money." I do eat fruit yoghurts most mornings, but otherwise good, home prepared foods, no junk.

I sincerely hope some Mums/Dads come along with their experiences to give you the information you so desperately need, and support.
Take care,

Liz.

[rocksgirl]

I'm 32 and have had crohn's disease for 11 years.
This year, my infected bowel has spread and although I've avoided operations in the past, surgery is no longer an option.  I cannot go back to steroids as I've spent 7 out of 11 years on steroids and my bones can't take it anymore.  I've been getting progressively worse and have tried everything but Methotrexate and Remicade.  My doctor says Remicade is a last resort and wants to put me on Methotrexate, but I'm scared.  I could really use some advice...
Also, for those on Methotrexate, did you need to take time off work?  

[lizziecee]

Hi - welcome to our Crohn's community.

As you can see from my above post, I have been on methotrexate for 7 yrs now (steroids 30 yrs, which have also played havoc with my bones, so on a weekly bisphosphonate, alendronate, and Calcichew/Vit.D3 twice daily). I was on 25 mg tablets of mtx once weekly for 5 yrs, but my symptoms got gradually worse so my gastro changed me to 12.5 mg injections weekly the last 2 years. I am doing fine now, but you must have regular monthly blood tests as it is a cytotoxic (chemo) drug and can have serious side effects.  I have not had Remicade as I also have psoriasis and my gastro is concerned about the infusion site causing it to get worse.

I am retired, so work is thankfully not an issue.  I self inject the mtx injections, takes all of 2 minutes, so you shouldn't need time off work. The used needle and capsule have to be disposed of very carefully  - my GP gave me a special container to put them in, and a guy from the local council comes to pick it up when full. Works like clockwork.

Methotrexate has made a huge difference to my quality of life......suggest you try it and see how you get on. As with all potent drugs, some people are intolerant or allergic to different ones - I couldn't take Azathioprine, but no problem with mtx.

Take care,
Liz.

[rocksgirl]

Thank you for the warm welcome and the advice.
I've spoken to a few people about MTX and so far, no one taking is employed.  This scares me.  I'm only 32 years old and I don't want my career to end so early in life.  I know my health is more important, but I had to quit work once before due to my meds and I felt depressed and worthless.  I always feel guilty when I get sick and have to miss work or can't clean the house or take care of myself; I'm not sure why I feel this way.  My husband is wonderful and very supportive.  My step-son is amazing and my extended family are great.
I'm also worried about kids.  We're not planning to have kids right now, but we're going to talk about it again in a couple years, if my health has improved.  
I tried imuran and had a horrible reaction to it - it actually caused a flare up and new symptoms that I didn't have previously.  Since then, my diseased bowel has spread.
The doctor doesn't feel the capsules will work for me and wants me to take injections.  I can't handle giving taking them, but not so sure I can handle the symptoms.

[lizziecee]

I do understand and empathsise with your problems.  I was fortunate in my 30's to work alongside my husband in our own company, so taking time off for hospital visits was not a problem, but could have been if I was employed otherwise.

I have found, being on methotrexate injections, that the disease is kept in remission and I have only had one flare in the past 7 yrs which was due to having to stop mtx in order to have FEC chemo for breast cancer.  Once the inflammation is under control, you will start absorbing your food properly which in turn will give you more energy....well, that has been my experience. I don't know anyone on mtx to compare myself to. I have no side effects such as I had on steroids. My gastro will not prescribe prednisone for me now as I had steroid induced psychosis when dx with breast cancer. I was on prednisone for some 30 yrs and it has significantly affected my bone density so I have to take a bisphosphonate weekly, and daily calcium tablets.

You perhaps should take your gastro's advice and see if you can tolerate mtx, not everyone can, so guess I am lucky in that respect. You may be too.

Why is surgery now not an option? I have PanCrohn's Colitis, with ulcers and crypt abscesses in both the small intestine and colon, and although I now have two strictures in my small intestine, they are not causing problems at present. I have never had a resection since I have always responded to medication thankfully.

I do hope you get some relief from your symptoms and lack of energy soon.

Take care,
Liz.

[maxipaxi67]

My daughter Risa been on Metho for almost a year after trying remacaide, 6-MP , asacol, but now it's losing its effectiveness!! Unfortunately!!

Good luck to all on Methotrexate!! I am hoping Humira will work for her next!

Crohns is really an annoying illness for her though!! Wonder if exercise or lack of plays a part in managing the disease!

Thanks!

[lizziecee]

Guess I spoke too soon about methotrexate keeping my Crohn's in remission! About 6 weeks ago I got severe nausea, loss of weight, no appetite and pain in my oesophagus on eating or drinking. My gastro did a CT scan (showed evidence of inflammation in the terminal ileum), MRI showed two strictures in the small intestine, and a gastroscopy showed stage 1 oesophagitis.  I have been on an elemental liquide diet for the past 2 weeks, Fortijuice 3 times a day, plus omeprazole for the inflamed oesophagus and domperidone for the nausea. He has doubled my mtx injections to 25 mg weekly and the last 10 days I have also been taking Budesonide (entecort), 9 mg daily.  He said I may have become resistant to methotrexate, but he has never had an IBD patient on mtx for 7 yrs, so has no precedent.

He said he cannot be sure if the oesophagitis has been caused by alendronate acid, which I was taking weekly for bone density loss - due to 30 yrs of prednisone and 4 yrs of Arimidex, (breast cancer adjuvant hormone therapy to prevent a bc recurrence.) I have stopped both bc drugs.

All in all, a bit of a mess at the moment. I am concerned that the breast cancer may have metastasised to the GI tract, which although rare, does happen. I am seeing him on Friday 1st August for the histology results on the biopsies taken at the gastroscopy, and a treatment plan. He said he will not advise surgical intervention of the strictures until we get the inflammation under control and I put on some weight, currently at 112 lbs.  Additionally, he said he is not happy to prescribe one of the new anti-TNFa biologic therapies, such as Humira, Cimzia, Remicade etc.,  in light of my previous breast cancer and the fact that the strictures will become worse.

Since taking the budesonide and other drugs, I am feeling a little better, able to eat a low residue meal once a day for the past 5 days, so there is hope that we are getting the flare under control.

Maxipaxi - I don't know if any research has been done on whether exercise or lack of, plays any part in keeping Crohn's in remission. I played squash 3 times a week when I was in my thirties, and I still got regular flares.  

Take care all,
Liz (Crohn's Community Leader)

[rocco9]

Hi, I've just started methotrexate 3 doses so far which I think is to soon to tell.My cousin isa nurse at U-mass med. center. Her friend has been on this for awhile and its helped alot.I 've heard good things about this. It does make me tired I will say.Time will tell to see it effects.Which I hope is a + for myself and your sister.I know what she and the rest of us go through.I find helping with my stress does alot!.....Well good luck and be well!......Will get through this thing and that how we have to think......Rocco9

[rocco9]

I started Methotrexate 4 weeks ago and feel so much better.And yes working was no problem.Are you a stressed person if I may ask?For me that always make it flair. a lite workout helps me also.It makes you feel like you can get back into regular life,which you can.counceling is helping me also its amazing how some of this can be linked together.Getting back to a workout putting blood back in the colon helps it heal.When stressed the colon is the first thing to react.Anyway chin up will get through this stupid thing we have.,,,,,,,,Rocco from MA........

[ajmc]

Been on methotrexate for 5 week now. (after being on steriods for a year and now off them)  25mg injections weekly with a folic acid tablet to take 3 days after injection.. Not feeling great with it tbh, go to the toilet 10 times a day to pass a little blood every time, and maybe twice in that 10 actually make a bowel movement. Somethimes feel sick too. Always tired too. I want to try infliximab next as 6mp and azothirprine i had reactions to and it seems the only thing left. I still manage to go to work and i play football 4 times a week, but always need to rush to the loo whatever or wherever i am doing which is terribly annoying as i am a single 28 yr old male. I have lost a lot of confidence and dont really go out to socialise because of not feeling well and the toilet issues.

[jopm]

Hope you are feelin a bit better now. My 14year old son is waiting for the call to start weekly methtxte injections. He's on infliximab infusions 4weekly but doc says these should last 6-8weeks. will stop taking aziathorprine which he has been on for 3 years. He was diagnosed when he was 9- just gets on with it but now he is reaching puberty (or at least his mates are) and it is getting really annoying and making him feel different. How old were you when you were diagnoesd and do you have any advice?  Many  thanks

[ajmc]

Thanks, It was only late 2007 i was diagnosed. The methotrexate or azothirprine didnt work for me, but the infliximab alone seems to be doing the trick!.. As for advise, for the crohn's? I found that keeping hydrated helps a lot, and smoking is bad for it!.. As for going through puberty? Well, i was a pretty late developer, it aint easy when all your mates are developing quicker than you, but he wont be far behind them!..

[tammysnursey]

my daughter is 24.  She has had crohn's since the 10th grade.  we have tried everything.  The methtrexate is her last hope. Her colon has been removed and the crohn's is now in her small intestent.  As her mother I feel she does not take care of herself .  Her life is full of drama and stress which she tends to bring on herself.  She is very afraid of this drug. Any advise please.  She is tried of my voice I feel like I am just talking to a wall.  In fact I have stopped talking.  I am scared for her.  She has a hard time working and her confedence and selfesteem is so low.  What can I do to help

Tammy