Took myself off all meds...

Elaine -

It is very rewarding when you can make decisions about your treatment and find out that you are correct about a side-effect. Also a little frustrating as you whittle away the number of meds available, but hopefully you'll find something that gets you going again. So sorry to hear that you've been putting off the knee surgery(s) for so long. What exactly about your UC is preventing the surgery? The risk of infection? I wasn't aware that was a concern for us.

Anyway, ever since I started the Asacol I had a rash on my legs, was very fatigued, felt run down, and just generally felt like crap. This started a while after I was on the Asacol, and kept getting worse, to the point that I was concerned about it. It is one thing for the UC to make me feel lousy, but how I was feeling, and my GI symptoms were not consistent with others on the forum, so I began thinking it wasn't the UC. Right after I was originally dxed, I was put on the Asacol, and the whole time I was taking it, I had those sypmtoms.

When I moved to CO, and began seeing a new doc, he did some blood work, and saw that I had elevated allergen antibodies. Coupled with my other sypmtoms, we agreed that is was probably the Asacol. So we got me off the Asacol. I felt better for a week or so, but then BOOM!, my very first full blown flare. This was back in June. So the rash went away, and I felt physically better, but now I had the ****s, so while I no longer had to sleep 15 hours a day, now I spent those 15 hours a day in the bathroom! Doc and I spent the summer putzing around with blood tests, seeing how my symptoms were sans presciption meds, different probiotics, some diet regulation.

After being off the Asacol for a month, another blood test revealed that I still had the elevated antibodies. But since I was feeling better, doc and I thought maybe it was carrier molecule of the Asacol and not necessarily the mesalamine, so we are trying Lialda. I believe it is helping to get my flare under control, but after we increased my dose to 2 tabs twice a day, the rash on legs came back, as well as my neck and stomache. We decreased the dosage yesterday.

The part that annoys me the most is that aside from the no energy thing, Asacol really had my UC under control. My doc is sending my info to some researchers in the area, to see if I might qualify for new experimental treatments. In the meantime, I'm taking pred, lialda, VSL#3, and doing the colocort enemas nightly.

Sorry about the long winded post. I guess I needed to vent a little. This disease is so frustrating to me, as it is for just about everyone else. My goal right now is to get healthy enough to start exercising again, and then seeing if I could get a life to actively participate in. I'm really sick of being focussed on my bms, and not the other crap that should be going on in my life.

I am a transplant patient so I am on higher doses of immunosuppressants (well I was) Prograf (not usually a Uc drug) and I work in a pharmacy with germs flying all over the place and I dont wash my hands as much as I should. And, somehow, touch wood, I am less sick than my boyfriend that I live with because he has poorer sleeping and eating habits, etc. And, he got the flu shot, and I did not because it doesnt really work when you have immunosuppressants