I was sent home after my two nights in the hospital on two antibiotics. It turned out that these made me very nauseated.
I called my doctor’s office the following Monday to see if I could stop them. That was also the day of my weekly blood test to monitor my Imuran levels.
The doctor called later and asked me to stop everything because my blood test showed abnormally high liver enzymes. She said it could be a drug reaction and I was certainly hoping it was since I have enough wrong with me already :). She asked about me taking Tylenol – I now realize that even amounts that don’t exceed the recommended maximum dose can have that effect on liver enzymes, but I didn’t know that then.
She had me have daily blood tests that week and stay off medication. My liver enzymes happily dropped and by the next Monday when I had an appointment with her they were back to normal.
I had been scheduled for the next Remicade treatment that Monday (15 days ago) but the doctor suggested I try Humira instead to see if it might be more effective. The two act similarly but Humira is taken by self-injection every other week. I chose Remicade first because I didn’t like the sound of that. Anyway I was ready to try something else and live with the self-injection.
On day 1 it’s four injections, then two on day 15, then 1 every 2 weeks after that. The nurse did the first two and I did the second two. I’m using the “pens” (that’s a euphemism – since when did pens have needles in??) which you press the end of, they go “click” and it does the rest for you.
Day 15 was yesterday and I did the two pens myself at home. It hurts somewhat for a few seconds while the medicine goes in but goes away very soon after that and I haven’t had any pain afterwards.
I’m cautiously optimistic that it’s helping more than the Remicade was. The last 2 weeks my symptoms have been in the ‘better rather than worse’ range. Even if it is helping I think it will take a while for my system to quiet down and start to heal.
My doctor said I could go back on an Imuran-like medication also once blood tests established it wasn’t responsible for the abnormal liver results. I had said I didn’t want to go back on Imuran because that was making me nauseous; she said another similar medication might be better in that regard. But I declined because I don’t want to be on two medications that suppress my immune system and end up in the hospital again.
One thing I’m very interested to try is Low Dose Naltrexone (LDN). I’ve been reading about it the last couple of weeks and it sounds very promising as a treatment for Crohn’s. It’s much cheaper than Humira and seems less risky. It’s in stage 2 clinical trials so it’s still off-label, but can be prescribed.
I’m going to ask my doctor about it at my next appointment, which is on Monday. It seems like I would need to stop Humira in order to try it because they seem to act oppositely. Which I don’t expect my doctor will want me to do if Humira is working, or at least not until it’s been given a fair trial. But maybe she will think it’s ok to take both together. I’ll find out next week.
Any chance you might go the worm route? That sure seemed like it was effective.
Pretty low chance, I’d say …
I did ask my doctor about it. She said some people have got serious infections from the worms – so it’s not without risk. She said I could try worms if I want but LDN sounds like a better option in lots of ways.