this disease is starting to make me delusional

I think day-to-day sudden changes are not generally from infusions, medications, and treatments. More often recent meals, other health, and just the up and down of you metabolism.

I had a drastic change after my first infusion. It lasted til two weeks after my second infusion.

Then I began flaring again. My third infusion didn't do a thing. Fourth one is just under two weeks away.

Have been trying low residue diet and supplements now just trying anything to kick this flare. Hoping if I get it somewhat under control on my own before my next infusion then that will help me out greatly. If not, I see another prednisone taper coming so I can try to enjoy the holidays.

ElpisUnbreakable said...
miestomaga - I seem to have the same problem. I am always great for 2 weeks after my infusion and then the wheels come off the bus. I feel your frustration. And it seems like the holidays are always dicey. Stress? who knows.

My GI said it is normal to feel great for a few weeks right after an infusion but to expect to go back downhill in the weeks leading up to the next one. He said that is common up until about the 6th infusion or so and then it should stick for the whole time between infusions.

He said I would feel great again after my third. My third did absolutely nothing and has caused me a lot of concern. I just don't understand how the first two worked miracles and the third did nothing.

miestomaga - It was after my 3rd infusion that I ended up in the hospital with the surgeons ready to cut. So they gave me an extra dose in the hospital and I started to slowly improve. I think the 6th infusion seems to be my magic number and I hope you experience the same too.

Andrina - I am on double doses every 6 weeks now and my GI really wants to stay there because he said every 4 weeks is just too much. I actually passed a formed BM today! Yes, there was blood with it but....I will take it. Yes, lots of happy tears today. Praying this means I am coming out of this awful flare.

Elpisunbreakable if you get any worsening of symptoms before 6 weeks than I would get the next infusion early. Because clearly you respond to remicade but it looks like it is not staying in your system.
Or you are absorbing it to quickly etc.
are you still in iron infusions? Because I know that iron can bind up some medications. Maybe that is part of the problem and when you get off iron uou will retain it better. I'm also going to guess that as you improve and have less BM and bleeding uou will keep more of the medicine.

I think is the number is about 5 they do further testing and it will take a little longer. Mayo has some good info on the testing that I found very easy to understand.

Yes ask your hematologist about the iron. It's possible it does not bind to remicade but the pharmacist told me that it binds to a lot and not to take my imuran within a few hours of iron

Thanks for asking, I am doing ok I am having some mild rectal inflammation that is causing annoying symptoms but for the most part it's bearable. My fatigue is a little better although I am still kind of blah. I'm thinking it's partially due to my attitude and I'm trying to do some attitude adjustments. Hopefully they will help.

haha now that is entirely possible. :)

Dikid - thanks for the info about the iron. I am going to ask my GI next time I see him. Glad you are feeling a bit better. Sending positive delusional good vibes your way....