Increasing Inflectra dose

Flowers: Are the copays for something like Xeljanz on Medicare the same as any other copay then? Like, I pay $35 or something for my Imitrex. Is that how it would be on medicare? Or are people here really correct that they'd have to dish out tons of money?

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.

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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 prescription 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.

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Post Edited (Rusty Barr) : 12/1/2022 4:21:39 PM (GMT-8)

Not a shock to report. I get the Inflectra 10 mg 8 week dose Monday morning the 5th. And I see immediate improvement. 4 times a day and once in the night. I’ll take it.

I’ll stay on the 9 mg of budesonide and the 4 tablets of welchol each day until I see my GI on the 19th.

I’ll still beg for a new biologic in that appointment. I have to switch because I believe even going to 10 mg of Inflectra every 4 weeks won’t work for me. Why do I believe this? Because last prior infusion, about a week after, I was doing ok, and I tried dropping budesonide to 6 mg a day …and within several days I saw immediate impact of increased urgency and increased frequency. That tells me the budesonide is doing much of the lifting today. And I need a new biologic so I can get off the budesonide.

I’m going to ask for Stelara.

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Inflectra is obviously working for you. It just wears off before your next infusion. If you went to every 4 weeks you might have a higher level that doesn't drop below the threshhold of what works for your body between infusions. Might be worth a try for 2 infusions at 4 weeks before switching since there is no way to know for sure if a new drug is going to work at all.

I remember when my doc wanted to try 4 weeks before switching, I got him to promise that if it didn't work we could change quickly. I wasn't bad with symptoms at that point, but I had been in that flare for 2 years and was beyond tired of it. I was pleasantly surprised at how well and fast it worked.

Keep us posted.

I think it's worth giving it a try, you have nothing to lose. Wouldn't it be great if some fiber is all you need. Let us know if you decide to give it a go.

Well, I’m in a real quandary. I’m doing really well the past two or three days. Remission like. 1 or 2 movements each day plus one in the night. Great looking stools. Or chunky.

No urgency at all.

The medicine mix I am currently on is definitely working at the moment. The 10 mg infusion I had on the 5th. The 9 mg each day or budesonide. The 2 tablets twice a day of welchol.

I have my appointment coming up with the GI on the 19th. My plan was to ask for a switch to Stelara. Switch to that. Stay on the welchol which you can take long term and get off the budesonide.

I’m thinking I try and maybe wean off the budesonide once again later this week, drop down to 6 mg and see what happens. But the last two times I have tried that, I started to have problems. Frequency and urgency shot up.

It’s probably best I just stay here with the medicine mix that’s working. Let my body heal a bit. Then see the GI on Monday the 19th and run all this by him.

Your thoughts?

It also may be the that it’s taking a while for the inflectra to build up in your system. You may be like CC in that it works for you, but only at a higher dosage/frequency than is the norm. Since you’ve been on both the budenoside and welchol for awhile now but only saw a change with your latest infusion, I would attribute your improvement to the inflectra.

I know it’s so frustrating!

I am doing really well. 3 or 4 movements each day. Usually chunky or stools.
Plus one more movement in the night. Usually stools or chicken McNuggets.

I was planning on seeing my GI today and discuss switching to Stelara. Because… I’ve been taking Inflectra and things are now going great…. Last infusion Dec 5th 10 mg…But, twice before, soon after I got an infusion, and things were great…I tried dropping down off 9 mg of budesonide to 6mg…and things got lousy after 3 days. Forcing me to bump my dose back up to 9 mg. Lousy… being, urgency increased as well as frequency.

Well, I get to my “appointment” today and I was told the appointment was cancelled and the nurse was supposed to call me to give me that news. Well, I didn’t get a call. Sheesh.

So. Now. Next step is a colonoscopy on January 6th and an appointment on January 9th.

Of course, that’s the soonest he can see me. He is “booked solid”.

It might be a good thing that the appt was cancelled today. The scope (and biopsies) will show what things look like. Then you and your doc will have more information to decide what to do with your meds.

While your symptoms don't sound horrible right now, you had been back sliding the further you get from your infusion. You are only 2 weeks from your last infusion. Don't change any of your meds and just keep taking everything the same way. Then if you start to back slide this time, that would definitely point to the inflectra losing effect too soon.

D -- can you ask your doc for pred to help get you through the holidays and give inflectra more time to work if your symptoms are severely affecting your daily life? Budenoside/Uceris is also an option but can take longer to work and may not touch a really bad flare.

Hope the infusion on the 23rd helps!

Well FMT didnt heal me P) i did my infusion today, have an appt with Dr on 27th
Question: the fact that for the past 2-3 weeks when i go to bathroom what comes out first is a decent amount of just cloudy liquid with specs of poo, barely any smell to it: does this means that my rectum and possibly sigmoid colon is pretty shot? Not absorbing water? What is The cloudy liquid, is that just mucus or possibly puss? It does not smell. At times there’s light blood to it.

Nah I wish it was the enemas.
Well i did infusion #3 yesterday (love it how they call it infusion 😅), had a super rough night last night waking up every 1-2 hours, gass and D and pain, but the bleeding stopped. Today i have frequent watery diarrhea.