who has used methotrexate for crohns?

My son was 7 when he was diagnosed with Crohns. Since then he has been under constant treatment. We were given steroid courses, infliximab, adalimumab injections, and now he is on methotrexate every week since 2 weeks. My concern is that this injection is a chemo treatment, which can have many side effects as well as good effects. My son is now nearly 11 years old. His health is deteriorating by the day. He feels weak and dizzy, cannot do activity like playing outside with other children because he feels tired and worn out. I would like somebody with the same situation to share their experience with me, especially if anybody has used methotrexate on their child.
Thank you . please post comments and any suggestions. I will be more than happy to share my son's medical history and effects of treatment. We all want to do the best for our children.
(Mrs jafferi ) Hertfordshire

[lizziecee]

I am sorry to hear that your son is having severe fatigue problems as a result of his Crohn's disease.

You asked about methotrexate - I have had Crohn's for 40 yrs, diagnosed at 25 rs old in 1970 when the only drug to really treat this incurable disease was steroids. Some 9 years ago I found methotrexate on the internet and cajoled my then gastro to prescribe it, which he was not happy to do, as at that time it was "off label".  I did go into remission for quite a while, but after 2 years, I was diagnosed with breast cancer and the Oncologist made me discontinue the mtx, as he said I would die of septicaemia if I continued with mtx and the FEC chemotherapy. Interestingly, methotrexate had been used to treat breast cancer, but it obviously didn't stop me getting it! For the four and a half months I was on FEC chemo, I did not eat any solid food because of the chemo side effects and was kept alive by Fortijuice drinks - 3 bottles a day which gave me 900 calories.I also was prescribed 2.5 mg of dexamethasone daily.

I continued on methotrexate after bc treatment, orally at first, but my Crohn's symptoms came back with a vengeance and my new gastro changed the mtx to self injected weekly injections of 25 mg.  However, some 18 months ago my flare was severe with a C-reaction protein level of 270, when the norm is 5 or less, and I was hospitalised for 2 weeks. My gastro had hitherto refused me infliximab, because of the risk of lymphoma (my breast cancer had already spread to the lymph nodes in my axilla). However, at this flare he said we really had no option but to prescribe Infliximab, along with methotrexate.  I did get a lot better, but then had to have a right hemi-colectomy for multiple ulcers/crypt abscesses in my small bowel and colon and strictures in the small intestine. We continued with both medications for some months, but I then had a severe allergic reaction to the methotrexate and we discontinued it.

For the past 18 months I have only been on Infliximab - I have it 8 weekly as a day patient in hospital.

Unfortunately fatigue seems to go along with Crohn's, even when the disease is in remission, and I still suffer extreme fatigue so I try and pace my household chores, although I do have help for the heavy cleaning each week.  The Crohn's and Colitis Assocn in England have been given a grant by the Lottery Commission for research into fatigue and I believe the study has started. You can get more information on this study from the Crohn's Assocn website.

I am not sure how I can help you further, but am willing to answer any questions you have.

Liz in Cornwall, England.

[crohnsmom46]

my son was diagnosed at 10 he is now seventeen.he has been on humira and metho combo 1 time a week for 4 years.He has been written up in medical journals and we found awonderful team of ped G. I.in LA.Cedars sinai.   He struggles and has had 2 temporary illeostomies one he has now is now being disscussed for a resectional.we are hopeful.But even then He has never been out of the hospitol for more than 8 months at a time.