Thanks all for your responses.
I had a virtual meeting with my CRS. He sorta knew what was going on. He has not been kept in the loop as I was trying to work with my PCP, GI, Nephrologist and Infectious Disease/Infusion specialist. (It's been like herding cats!)
I advised my CRS that nephrologist really thinks my body may need a break from Remicade and methotrexate. He advised me that he would agree to not taking methotrexate but that I absolutely had to be an an anti tnf from now on. He has had me in 3 surgeries and, after pulling a code on one and renal failure in the other 2, he is very doubtful if I could survive another surgery. He stated that people with multiple extra intestinal symptoms do not fair well if they go off an anti tnf. He was so concerned he called the nephrologist after our meeting.
The nephrologist is now saying that although my Egfr is dropping after every infusion my body is recovering up to an acceptable level of Egfr of 73 with other aspects of my labs just alittle off. Since the CRS shared his information she wants me to continue with Remicade. She would like to see the infusions of 7.5 every six weeks to be changed to 8 weeks and if I stay stable to drop the Remicade amount...and if I still stay stable to try infusions at 9 then 10 weeks. No methotrexate. She would continue to order labs 2 weeks after my infusion and one right before the infusion starts. (I would like it to be done a few days before so if my egfr is too low I would know and not have the infusion...but I have to battle that one out later.) But she then stated I would have to address this with my GI and see what he thinks.
My GI....he used to be fantastic. Now getting a response from him is challenging. I am unsure if it is him, his physician assistant or his other employees.....or maybe it is the Covid surge. I just know that things have changed and I am so frustrated. With no antibodies from the vaccine, kidney issues and Covid running rampant....I am hesitant to go into his office, he only does virtual appointments one day a month, his PA does not like me (feelings mutual) and I do not trust her for timely responses. It took him 9 days to get back to me when I sent a message thru our patient portal (it was
opened first thing the next morning) that I was in acute renal failure after my infusion. I asked him for a name of a nephrologist he was willing to work with. No response in the patient portal. He called waaaaay late...over a week later. He said he had just received the information. Hmmm. So either he didn't get it or he sat on it...so who do you trust? I am not willing to shop for another doctor at this time. Plus he's supposed to be one of the best. And so.....I am stuck once again waiting for yet another response from his office. I am trying to get my next infusion moved out 2 more weeks to 8 weeks. What a mess!!
So currently I am stuck between a rock and a hard place.
I also called my rheumatologist. She stated that sometimes Remicade will cause joint pain. She wonders if-although I am bone on bone in both knees because of Prednisone-its not making my pain slightly worse. I just know my knees have almost always hurt worse after my infusion but this last time or two it's been really challenging. So she just prescribed some pain cream for now. If we move the infusions further out I might get a clearer picture on if my knees improve right before Remicade....
Tonight...I loathe Crohn's disease and the way it has ravaged my body. It's like I am 85 instead of 60. I used to read the forum and think...oh Thank God that's not me.....and now I am that person having all those difficulties. I am so sad. It seems like the medical field looks for things to relieve our symptoms and not a cure. In the meantime I am getting my bottom kicked on a daily basis.
So folks...I would appreciate it if you would say a prayer, cross your fingers and send all the positive energy you can spare. To any newbies reading this...My case is one of those exceptionally rare cases that you should not base your decisions on...your journey will probably be much easier and better than mine has been.
P.S. The CRS, PCP, Infusion docs all talking to one another. The GI has been out of pocket when my nephrologist called him...and she has missed 2 of his calls. I just have to keep them trying... But really...Should the patient be the one driving their physicians contact attempts?
Post Edited (clo2014) : 8/12/2021 9:30:23 PM (GMT-6)