Is there a light at the end of this tunnel for me?

[elroque]

I was diagnosed with Crohns back in June or July 2007. Prior to the diagnosis I was suffering from severe arthritis (to the point I could not move and was super swollen), mouth sores so severe I could barely speak, uncontrollable diarrhea and rectal/intestinal hemorraghing, CRAZY hemmorhoids, nausea, lethargy.....I think that covers it. Anyway I was first put on Plaquenil to help with the Crohns symptoms particularly the arthritis since it was so severe and then I got switched to Imuran which I have been on since November. I have also been on Prednisone FOREVER and even though they are trying to wean me off I have crazy flare ups every time they decrease the dose so they then have to up my dose AGAIN. At this point I am so scared that I am steroid dependent and I do not want that because those side effects are the worst ever. They are going to try and put me on Humira injections to see if that helps with the Crohns. I guess I just need some sort of outlet to vent about this becuase even though my family and loved ones are very supportive they really don't understand as to how this disease can just suck everything out of you and how depressing it is to never have any of the treatment regimes work. I guess I just want to know whether there is some light at the end of this loooooooooooong dark tunnel. I just really want to get back to a good quality of life-back where I was before all of this started. Is there some sort of consensus out there about what treatment has been the most effective?

[Michelle19]

Have you tried Remicade?  I have heard that it can be especially useful for steroid-dependant CD.  I personally received my first dose recently and except for some other complications have been doing much better.  My case was actually steroid-resistant, where Prednisone worked wonderfully for my last flare (even though I hated every bit of it), it just stopped working with my next flare up.  My GI said that once CD has progressed past the point of being quickly controlled by a steroid, then it is time to move on and try the injections which have a much higher success rate in types like you & I.  Ask your GI about it!  Most don't try to recommend it because it is so expensive, but your insurance may pay for it or you may be able to get assistance from the company that makes it.  Good luck!

[lizziecee]

Yes, there certainly is light at the tunnel! I have had pan rohn's colitis for 38 yrs, dx in 1970. I was on steroids for 30 yrs which have wreaked havoc with my bones, but there wasn't much else out there then.  I found methotrexate on the internet and badgered my gastro to prescribe it, as it is not licensed for Crohn's disease in England. I started on 25 mg orally, weekly, but this did not entirely ameliorate the symptoms, so about 6 yrs ago I was changed to 12.5 mg weekly injections, which I do at home. This has made a huge difference to my life and I no longer get flares.

As far as I understand Crohn's, it is a chronic, incurable disease and the best way to keep it in remission is by taking an immuno-suppressant, such as methotrexate. Steroids should only be used when having a flare to bring the disease under rapid control.They will not keep the disease in remission.

There are of course, other meds to treat Crohn's, many of which I have taken, but mtx is the only one that has given me years of good quality life.

Mtx is a cytotoxic drug (used primarily for cancer) and is not prescribed lightly. It can be very toxic to the liver, but as I have comprehensive monthly blood tests, with only 3 out of range parameters (high MCV and MCH, low haemoglobin) my gastro is quite happy for me to continue on it indefinitely, as am I.

Perhaps you can talk to your gastro about methotrexate and see if he has any patients doing well on this drug.

Take care.

Liz in Cornwall,England.