Cyclophosphamide (Endoxan) for Crohn's

[hopeful]

Has anyone been treated with Endoxan (cyclophosphamide) for Crohn's?

There are 4 published papers on the topic, 3 trials, 2 in Germany and one in Hungary. Uncontrolled trials. The dose used was about 800mg once monthly.

The results are nothing less than spectacular - I don't know of any other drug as effective in getting Crohn's into quick remission as this one - if one trusts the initial studies. So why has no one followed up on this with a controlled trial? Obviously funding is an issue.

I spoke to a friend hematologist, he said that the dose is very safe, a joke in his words, compared to the doses he uses in cancer therapy. He told me that the risk of hurting the bladder (the main risk mentioned with it) is just about non-existent at this dose.

There is a stem cell trial ongoing in U.K. and since they want to work out which is having the beneficial effect, the stem cell treatment, or the cyclophosphamide that always precedes it, so they are testing two groups. One only with cyclophosphamide and one with that followed by stem cell transplant.

I asked the researcher in Hungary why they didn't test the oral route (daily, low dose, like its used in lupus or other autoimmune disorders) and she wrote that it was for cost reasons. She said the low dose route may also work differently - so there is no knowledge about it yet.

If anyone cannot access the studies on Google Scholar and wants to read them, send me a private message and I will send to you.

 

[PsychoJane]

Cyclophosphamide could be very promising. I have been treated with it when I was younger. At the time, it was not for my crohn, it was for a vasculitis (probably drug induced) by the meds they were trying to treat my crohn (refractory case, they tried cyclosporine+mp6 and one week later they chose to remove the colon instead because of the vasculite). That said, I received that treatment for 6 or maybe it was 8 months. It was tolerable even if it required hospitalisation every month for the injection to prevent the nephrotoxicity. This is actually one of the reason why they don't do the oral route, they keep you in condition where they flush your kidney by keeping you on IV during that time. It is safer. It all seem wonderful, but the cyclophosphamide is carcinogenic, therefore, it needs to be taken in consideration. It may also cause infertility in both men and women. I was warn of that aspect when I was a teenager. Now, I think they freeze eggs and sperms to give a chance to the patient. Anyway, all that being said, I was lucky enough to be in remission for 10 years after that. Nothing will ever say if it was the colectomy, the cyclophosphamide (that they didn't use for the crohn's ar that time) or the effect of both that allowed it.

 

[effdee]

I received just under 3,000mg per day of Cyclophosphamide for four days as part of a stem cell transplant. That wasn't the only chemo/immunosuppressive agent used, though, so I can't say with certainty what benefit I received from it. I did notice an improvement from it, or the combination of all of them, though, before the stem cells took effect. Different usage/goals in my case, but I wouldn't be surprised if Cyclophosphamide is an effective treatment. It follows the same premise as other treatment options. It has serious side effects like other things used, but if it works well enough they may be justifiable.