Faith,
NY eh???? My Dad and his family were from The Midtown area. My Mom was from down south. We split our time between the two as children. Gosh I miss the street vendor hot dogs!! Nothing like them here. And the bagels.... Oh gosh.... And the cheesecake and Reubens... And the windows and the toy store .... And the leaves in fall and the crisp feel of the air.... Central Park.... the countryside outside the city. Such a special lovely area up there!
Holy Toledo. I jynxed myself. I went in today and my GI decided that he was going to try the infusion at 5 hours with no liter bag of saline. I was like a long tailed cat in a room full of rocking chairs. Very 🥵 uncomfortable.
They did give me premeds. They do not wait 15 or 30 minutes...more like 10. My last numbers showed a trough level above 30 and 0 antibodies. He said it was time to stop the saline. We are keeping the premeds. I refused to even go to a half dose. If my labs stay steady we will try to extend my infusions back out to 7 weeks... And then 8 weeks. He projects about
3 to 6 months per time period extension and that's if it all goes well. Then if my numbers remain high we will try to lower back down gradually to 7.5, then 5. But if I go into a flare we will change it back. He's been able to get me back to the 5/8wks three different times....with no premeds. The no premeds took a looong time to get back to....I am unsure if I can do that but I am hopeful. I will continue with the methotrexate.
I'm in an individual room usually so I don't get to see the people or if they are getting premeds. I can hear them though. Most of the people are in and out. Mary--works for the infusion place--gets her Remicade infusion in like 30 to 45 minutes no premeds and she's been doing it for 12 years like that. She's fearless.... That or crazy... Lol... Then there's the other lady that asks them to push the benadryl thru fast so she can get her monthly "high". LOL. I don't get high... It knocks me out completely for 2 to 4 hours. I have just enough time for it to be mostly out of my system so that I can drive home and then take a Benadryl pill if I am struggling.
It went well... No puking on the way home...as they ran it the same strength. I was concerned that the Remicade would not be viable after the 4 hour window - but he said not so... it was fine with a 5 hour run time but he doesn't want to extend it longer than that for now. He said he did have a lady that does 6 hour infusions. She is there all day. I got there at 745. They started it at 8 and I was done around 100.. but then they disconnected everything and watched me for another 30 minutes... I didn't think I'd ever get done.
With no saline...I didn't have to drag two poles around to go pee 12 times during my infusions. No nausea yet... But I do have a really bad headache.... I broke down and took my extra strength excedrine.... And even that hasnt helped. I'll look into what you recommended. Thanks!
I think he's trying to work with my PCP so that I can take Wegovy and lower all my supplements and other meds. I've gained so much weight on Remicade and methotrexate, my OA, psoriasis, hormones and blood sugar levels are going in the wrong directions. Apparently there are studies being performed on IBD and some of our patients lower GP1 secretion -- which they think controls hunger and helps regulate hormones, sugar levels, plus possible gut issues and flares, psoriasis, and maybe OA, ..Wegovy supposedly helps to supplement and lower or resolve issues. ..or that's what's been or is being studied.
I was in pretty bad shape when I was first diagnosed. The doctors got in touch with Dallas Baylor and I have a team of doctors there that are working to keep me healthy and try to improve my quality of life. I still struggle some... And we go searching for answers all over the place... (Houston, Mayo Clinic, Colorado... Sometimes Chicago or NY) But they have been able to keep me going so I'm pretty much game for trying things that they think won't harm me and may help me.... Sometimes I suggest them myself. LOL. (Oh Boy the stories I could tell there....) But the Wegovy was my PCP, GI, Colorectal Surgeon, Infectious Disease and dermatologist doctors idea. They think that it's more likely to help me than hurt me.. and we will start low and keep it low until my labs are stable. They are hoping it helps with a host of issues and lowers all the meds I currently use. Say a prayer and cross your fingers.
Now I'm on the Remicade high and won't sleep tonight unless I take another benadryl.... Do you have that issue? I swear after my infusions -- with or without the steroids-- (or Prednisone) I am a cleaning and work maniac.
BTW... A friend called me today. She went off Remicade. Her joints are much better.... But she now has to watch what she eats very closely. No other symptoms yet. It's been 3 months so far and she hasn't started another new med yet. I'm not sure what to make of that. My GI overheard us talking and told me that it's playing with fire... We should stay on some type of med. I told him she's still on her MX, he rolled his eyes and told me that usually not enough. Sigh...
Hope you continue to improve!
Clo
Post Edited (clo2014) : 6/15/2023 9:03:12 PM (GMT-8)