Welp. I am Scheduled to get an infusion on Monday Dec 5. Thank God.
My 10 mg of Inflectra at 8 weeks.
I’ve also got a GI appointment coming up on Dec 19th. On that day, I’m going to beg for a new drug. Stelara is the one I want to switch to. Will be interesting to see what he says. My guess is he will say ok.
Last time I saw the GI we went over blood test results. And Inflectra 10 mg at 6 weeks was showing 14 trough on the morning of week 6 infusion, with no antibodies. He knows Inflectra hasn’t been working that great for me but wanted to keep me on it a bit longer before throwing in the towel on it. He was hoping it would kick in.
He also said he was actually hoping for 5 or better on the trough test, And the 14 result was plenty. If fact, he thought it was maybe too much. He said it’s really not a good idea to over medicine. With this being a “high risk drug”. He recommended going to Inflectra 10 mg every 8 weeks, not 6 weeks. He’s the doc. I trust him and I said ok. He also gave me welchol 2 tablets twice a day, which definitely has helped me. And he knew I was also taking 9 mg a day of budesonide. He wished I could start to wean myself off that. But he said don’t do that until things are going really well.
Early on after my last infusion, I thought things were ok. I think I was going 4 times a day spread out throughout the day, for quite a while. Some days were 5 times. Almost always Stools or mush. And also once in the middle of the night I would have to get up to go.
I gave it a go trying to drop down the budesonide not long after that last GI appointment. But. After 3 days of 6 mg I had to go back up on it. I felt myself slipping. Urgency increasing when I had to go. That was the main thing. I felt myself having to run to the bathroom occasionally. And I hate that. So I upped myself back up to the 9 mg. And within a day or so I was back to where I was.
Things stayed pretty steady with this pattern of going, here up until a few days ago. Last infusion was at the 6 week interval.
Well. I think that the “Inflectra juice” is running out in my system, or it is all but gone. Because now I’m going 5 to 7 times a day and 2 or 3 times or so in the night. And a lot of these movements are loose and watery. This started a couple of days ago.
Urgency is minimal, but obviously, the watery is not acceptable, nor is the frequency of toilet trips. Sigh.
I’m not seeing any blood or mucus. I’m drinking a ton of electrolyte water to stay hydrated.
It seems the decision to go to 8 weeks. I’m paying for that now. Several of you here told me that you thought that that, it wasn’t a good idea, and you are being proven to be right.
Oh well. I’ve got to just hang on until Monday I guess. Then get to that next GI appointment and get a new biologic set up. I would try and see him sooner but his appointment book is slammed and I don’t want to cry for an emergency appointment unless things get super bad.
I also have a colonoscopy set up with this new GI on January 6. Last one was late March of 2021. I got a good report after the last one.
I noticed about
two years ago, every time my blood pressure was checked it was about
140/90. Sox months ago, visiting my GP, I told him this. He gave me a prescript
ion for valsartan 80 mg once a day. I bought a cuff so I could keep an eye on it at home. Ever since the medicine, I’m almost always around 115/75 now.
Take a pill. It works. No more high blood pressure readings. Why can’t they find a drug like that for UC? Sigh.
UC is rotten in case I haven’t said that in a while. This UC journey is just flat out depressing at times.
Post Edited (Rusty Barr) : 12/1/2022 4:21:39 PM (GMT-8)