Increasing Inflectra dose

Going 4-7 times/day with that kind of urgency is not good at all especially given the medication you are on. I agree with Clo -- be sure to tell your doc when you have told us. I know I have been preaching patience, but I think you have been patient long enough. See what the test and your doc says, but it may be time to start researching what might be your next choice for a med.

Also, based on your symptoms you might want to stay on the full dose of budenoside because I suspect you are going to back slide immediately if you stop.

Rusty,

I too have been advising patience.... But I think that boat has sailed.

Call your doctor and tell him the meds are not working without using both of them. Ask for an earlier appointment. Make sure you are following calls up with messages in his portal. You need that paper trail to get insurance to approve changes. (It also makes you the squeaky wheel. An uncomfortable but necessary position you will have to be in until you get something that helps you.) In your messages tell them about being forced to sprint for bushes or bathrooms. Ask them to imagine being forced to do that because their meds were not meeting their medical needs.... (Do it nicely cause you want to work with them.... But honestly....we, as IBD warriors, usually have to lead our GIs down the pathway we want them to look at, evaluate and tell us of hidden dangers.)

Research secondary meds he can add to your current meds that might put you in remission. You want to have an informed opinion so you can ask the right questions.

Get your trough levels as quickly as possible.(usually it takes LabCorp about 5 to 7 days then my GI takes another 1 or 2 to post it. If you have a LabCorp account you can see it when they send it to your doctor ... If your GI even uses Labcorp.... Sometimes my GI gets creative and tries out a new lab and I don't get the info unless I check in with him) If it shows low levels of Inflectra and low antibodies you'll want to shorten it to every 4 weeks. Personally I would also add a secondary medicine until I was in remission and then I could try to lower that later on..then if the levels didn't rise, symptoms didn't improve - I'd switch meds. And I wouldn't wait 6 months on a new try with inflectra. I'd give it 2 or 3 infusions and then move on. But remember... I am different from you and you may need to try a new med right away. If your trough levels are low and your antibodies are high you will have to make a decision... Try a new med or add something like methotrexate to your meds. (There are others out there. I just have experience with MX--it helps some people not develop antibodies.) If you think you want a new biologic med research a bunch and discuss this with your doctor, your insurance..... And figure out the actual costs and if there's an assistance plan available thru the manufacturer to lower your costs.

I had 2 friends that added in MX to Remicade.... On one she stayed with it for years. The other added it just until she could research and get everything set up to change to another biologic. She said that adding a secondary didn't completely help her...it helped her "make do" until she could research and find out what was best for her. I think she said it was only for 8 or 12 weeks. Her GI complained that she didn't give the methotrexate enough time to kick in...he wanted her to wait for 6 months but she switched. She said parking her car on the side of the road and sprinting to the bushes was not cutting it. She even had a port a Pottie in her back seat at one point. She went on Entyvio and thinks it was the right thing for her. So you never really know.....

Please let us know how the labs look.

Hang in there,
Clo

Insurance changes at work will be coming and you will need to take this into consideration. Get a list of all meds covered under each plan and make the best decision for you.

I had to look up the medication, it's Welchol which is a good medication for IBS. Since you have a history of IBS, you have nothing to lose giving it a go. I know you are disappointed, however, before going GF try this medication first so you will know if it's going to help or not.

Sounds like a good plan on getting the scope done in January.

Don't you get worse when you taper off the budesonide though? That would indicate inflammation (UC), not IBS. Did you tell him that? Has he had you do a calprotectin stool test to check inflammation levels that way? If not, I'd ask about that.

I forgot.... that scope is important. He does need to see if you have inflammation.

What's your labs look like? CRP? AST? ALT?

And in the budnison... It does help with inflammation so I would think there may be ongoing issues. Did he indicate if he wanted to add meds to... or change up your meds?

Clo

I agree with poopydoop's comments and have had similar experiences both re: IBS and also having high levels of many meds but they did not work for me.

Again, my thought is how can it be IBS if you worsen when you get off the budesonide? Budesonide helps with inflammation.

Rusty, back when the crohns forum was really active, quite a few of the members did well with Welchol. I was initially put on cholestermyine, I spelled it wrong, anyway, it didn't work very well for me. I asked my dr to switch me to Welchol & it worked a lot better.

Did your dr tell you to only take one pill a day, I was on more than that. Also, this needs to be taken with a meal. If your instructions aren't clear on how much to take per day, email your dr on the patient portal.

Good luck with it.

I'm glad it's helping.

Hi Clo. Doing slightly better since I upped to 1 pill at lunch and 1 pill at dinner. A little less urgency during the days and slightly less frequency. I’m probably going one time less in the night (now averaging once or twice, and have had a couple of nights of zero wake ups)…and 1 less time each day. So, that’s positive. I started the 2 pill total of welchol routine this Monday. 10/31.

I HAVE noticed some minor to medium lower abdominal cramping in the early evenings the past couple of days. Im home at that time so it’s not like being in the car doing my job as a salesman which is much worse of course. Then when I go to the toilet, I don’t want to push, it feels like I am kind of constipated and nothing comes out.
This is a known side effect I have read about online.

The bottle says 2 at lunch and 2 at dinner. But I’m going slowly up.

I think today 11/3 I’m going to jump up to 2 Welchol at lunch and 1 at dinner. And I’ll see what happens.

If this goes well, I’m going to try dropping down to 6 mg on the budesonide this coming Monday. I know my new GI wants me to try and wean off that or at least go down.

This whole Welchol thing has me scratching my head. Are my frequency issues …inflammation ….or are they “no gallbladder related IBS-D”?

The recent 14 trough and no antibodies blood test result (Inflectra 10 mg/at 6 weeks), and the fact that the Welchol is helping me, has me thinking all the frequency issues of late, it’s more IBS-D.

But, long before the welchol, I dropped down off the budesonide from 9 mg a morning to 6 mg a morning and frequency increased. So I went back up after several days to the 9 mg.

Would budesonide have any effect on “no gallbladder IBS-D”?

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Post Edited (Rusty Barr) : 11/3/2022 6:59:17 AM (GMT-7)

Starting today I have switched around how and when I am taking the Welchol. 11/5/22.

I’m now taking 2 tablets at 6:15 am and 2 tablets at noon. Starting this morning.

The past weeks I’ve been taking it at lunch and dinner.

The way the prescription on the bottle says, it’s 2 - 625 mg tablets twice a day. Doing google search, most people take it lunch and dinner, so that’s how I’ve been doing it.

Mornings have been my main issue in terms of Frequency. Not afternoons or evenings. And waking up in the night 1 to 3 times is annoying, but, I can get to the toilet and quickly go back to sleep. The late mornings especially are rough. Because I’m a salesman and I’m often in the car at that time, and so, when the urge comes, especially if I’m on a highway, I’m scrambling to find a gas station or having to go into the woods off an exit. I’m hoping this new way of taking the welchol gives me “morning constipation”.

The welchol has definitely helped me with frequency. Prior to the welchol I was probably averaging 6 or 7 movements in a 24 hour period. With the welchol that been down to 4 or 5. That might not sound like much, but that’s a big improvement to me.

If this new pattern helps me, I’m planning on trying to drop down off the budesonide one day this week from 9 mg to 6mg and see what happens. Last time I tried that, prior to being on the welchol, that did not work. Frequency increased. I’m curious as to what will happen now that the welchol is involved. I feel like I’m my own Guinea pig. Sigh.

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Post Edited (Rusty Barr) : 11/5/2022 10:05:32 AM (GMT-7)

Rusty,

Had dinner with pharmacist who's a inlaw of an in-law. Lol.... I asked about budnisone slowing down transit time. She said one if it's side effects is constipation. Based on that information... And what clients have told her.... Yes it can slow you down. It will also relieve the inflammation and that can make you feel better-regardless if it is IBD or IBS.

She also said she has several clients that take your gallbladder med when they have their gallbladder out. It helps them tremendously. They do not revert back to pre gallbladder bowel movements (in timing, number or the consistency) even with the med. She said what she has heard from clients is 4 times a day on an average, and usually there is some sense of urgency and the consistency is much looser or mushy.

So it could be either one. I guess you'll know if you can decrease your budnisone and you stay steady.

Crossing my fingers that it gets better.

Clo