Entyvio has stopped working for me. :(

fractal44 said...
My FECAL CALPROTECTIN value was 2,077.2mg/kg collected on 4-28-22. I'll see what the doc says at this point. Don't know about you folks, but it's ridiculous getting an appointment with my GI doc with how far backed up he is with appointments. Because of it, last time I had to see their Nurse Practitioner for my April appointment. My doc is still backed up with appointments and even the Nurse Practitioner is 5 weeks out for an appointment from this past Friday.

Do they have virtual appointments? They're not the best if you are flaring but it's better than nothing.

I also ask to be put on their waiting list if there are cancellations.

CCinPA: Thanks for the portal suggestion. I tried it and 2 days later got a response from the Nurse Practitioner at the practice. She says to stay on Budesonide (9Mg) per day until our appointment on Aug 9th. Thinks it too soon to switch biologics since this was my first 6 week interval with Stelara. Wants to do another injection at 6 weeks and then document the therapeutic drug levels and see if I'm still symptomatic at that time. If still low then we can consider changing to every 4 weeks.

This NP seems to be the same as your description of the one you had. Called the head nurse today and she is going to try and make arrangements for the doc to fit me into his busy schedule since I told her I wasn't pleased with the NP. Here's hoping! All have told me to continue on the Budesonide (9Mg) daily. After 5 days on it I am already beginning to feel the Budesonoide working

Post Edited (fractal44) : 6/30/2022 3:13:32 PM (GMT-6)

So sorry your biologics are not working well for you. There are a couple of new medication out now. I think rinvoq is one? But I know nothing about it.

Keep us posted. It will be interesting to see what your GI says.

Thank you both for responding. I will mention both Rinvoq and Xeljanz to my GI doc. As I mentioned, I'm a heart patient and I know there is a warning out by I believe the FDA on Xeljanz with it seeming to cause heart complications, and Rinvoq might be the same? I'm not sure what the final verdict is on either but I will research and ask. I hope I don't have to go back on Budesonide since I was on it a little over 4 months and gained almost 20lbs of weight on it that I don't need! My cravings for sugar on Budesonide are amazingly elevated. I also experienced quite an energy reduction after coming off it. I will post an update on Weds after seeing the doc.

Post Edited (fractal44) : 9/26/2022 6:20:27 PM (GMT-7)

Sara14, thanks for your reply! I think I'll have to go back on Budesonide to get me through this stage until we do our next med. I'm starting to find urgency is coming back etc... Sure looks like Stelara is a no go for me! Yeah, talked this over with a different GI doc I had previously when Entyvio stopped working for me. He first suggested Remicade but when I told him about my experience with Humira and that I had researched their similarities he agreed we should stay clear of it! He then suggested Stelara and hence we are here.

Thanks, I was thinking the same thing regarding my cardiologist.

Hi Sara14,
Sorry, I'm late with the update. If it's not one thing its another here. I hurt my back recently and have sciatica of the right side. Pretty painful and have been dealing with that also. It will get better just takes a little time. Anyway, yes I saw my GI doc this past Wednesday. He doesn't want to abandon Stelara yet since so far we only did one dose at the 4 week schedule. He wants me back on Budesonide in the interim. I told him I really don't want to continue taking Budesonide because of weight gain so he then said he wants me to also start taking Azathioprine 50Mg tab 2 1/2 tabs a day. He said it takes 4 to 6 weeks to kick in and hopefully at that point it will be helping enough that I can stop taking Budesonide. However, my pharmacy called me later that day and asked if I was still taking Allopurinol (for gout) which I am and they warned me it can intensify the Azathioprine and I should contact my GI doctor to see if he wants to change the dosage or the med. They also told me what the possible side effects could be, and that was pretty scary! I left a message for the doc on their online portal and then left the same for his nurse but have yet to hear anything back from him. Well I'm very glad the pharmacy caught that drug interaction! I held off on having it filled until I hear back from the doc. With those kind of side effects I'm wondering if it will just be better to stay on Budesonide. I have a follow up appt with the doc in 6 weeks.

Post Edited (fractal44) : 10/1/2022 4:14:18 PM (GMT-7)

Funny, because even the pharmacist when they called me about the interaction of Imuran with Allopurinol also asked if the doctor told me about the possible side effects of this drug. Of course, he didn't and it amazes me how easily they prescribe this stuff because it sure doesn't sound like something I want to try and take a chance on! Pharmacist said to monitor and watch for pain in your right side of the abdomen and it's possible for your skin to start turning yellow (kidney issues), possible fainting, dizzyness etc... I'll pass, because at least I know what to expect with Budesonide. Furthermore, how is taking either going to tell me if Stelara is working? The only way to tell is when he decides to have me do the next blood work to see if the Serum Ustekinumab value comes up to where it should be. He just doesn't want me to be miserable in the meantime. I just looked up Imuran and see some people reporting no issues with being on it for 2 years while others mention panic attacks and anxiety while taking it. Honestly, all these drugs we are put on are a crap shoot.

Post Edited (fractal44) : 10/2/2022 1:02:07 AM (GMT-7)

I was on Imuran while on Remicade & Humira, I had no problems with it. My dr ordered regular labs to make sure I never got out of range. Some drs prescribe it alone, but again it's all about having regular labs.

What dr is taking care of your gout & what is the length of time you are suppose to be on Allopurinol? Drs only spend so much time in school on drugs, their knowledge of drugs depends on what field they will be working in. I've only had one experience with a dr writing a script that would interfere with medications I was on at the time, it was caught by the pharmacist.

Hopefully you will start to improve soon.

fractal44 said...
Funny, because even the pharmacist when they called me about the interaction of Imuran with Allopurinol also asked if the doctor told me about the possible side effects of this drug. Of course, he didn't and it amazes me how easily they prescribe this stuff because it sure doesn't sound like something I want to try and take a chance on! Pharmacist said to monitor and watch for pain in your right side of the abdomen and it's possible for your skin to start turning yellow (kidney issues), possible fainting, dizzyness etc... I'll pass, because at least I know what to expect with Budesonide. Furthermore, how is taking either going to tell me if Stelara is working? The only way to tell is when he decides to have me do the next blood work to see if the Serum Ustekinumab value comes up to where it should be. He just doesn't want me to be miserable in the meantime. I just looked up Imuran and see some people reporting no issues with being on it for 2 years while others mention panic attacks and anxiety while taking it. Honestly, all these drugs we are put on are a crap shoot.

Wow, that's pretty irresponsible your doctor didn't tell you the possible side effects of imuran. You have to do all sorts of labwork while on it to monitor your blood counts--it was weekly for the first month and then I think monthly for the next several months (I only lasted a month on it and then said I'm not doing this to myself anymore). And I agree with you--how will you know which is working if you're on both? I don't mean to scare you away from it though. A lot of people seem to do well on it for years. And for some people, if they do get nausea, it goes away after a month or two. I just couldn't tolerate it at all and I usually do pretty well on most GI meds I've taken. Good luck with whatever you decide to try!

Yeah, you need the blood test Flowers mentioned before starting it, but that doesn't show if you'll respond to it or not have any side effects. That's to make sure you don't have a potentially deadly side effect from it--bone marrow suppression.

Thank you both for your responses. I'm a little pissed at my new GI doc for not telling me all that was envolved with taking Imuran. We are all human, so I can let the drug interaction issue slide but not to tell me all the requirements regarding constant blood monitoring etc... there's no excuse for that! He never said anything about even requiring a test before I started it. Honestly, he is one of the top doctor's in the group and it's difficult to get an appointment with him because of that. So I'm very disappointed with this situation and like I mentioned previously, this is only my second appt with him! I think quantity for profit is once again winning over quality with their practice. I also know they have him wearing many different hats in their organization. sad

I would be frustrated as well. I'm sorry. Methotrexate has similar potential side effects and monitoring requirements as far as I am aware.