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Ulcerative Colitis
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Posted 7/24/2022 1:21 PM (GMT 0)
So I’m back in a flare. Had a consult with my GI last week. I told him how my symptoms have been up and down. It’s like entyvio is working intermittently. My calprotectin results confirmed this. Results being 1000, 28, 580. My GI agreed to write a script for the sodium butyrate enemas I wanted to try. He also wrote a script for budesenide 3mg tablets. The next day he rang me back which I thought unusual. He said he had good and bad news. The good news was he was increasing my entyvio injections to every two weeks. The bad news was he couldn’t find a compounding chemist for my enemas. More worried about the increase in the injections I messaged a friend who is also on entyvio (I met on here) she told me the dosage he has prescribed is the actual recommended dose and not an increase at all. My Dr has obviously thought about my calprotectin results and looked at my medication, noticing I was only having injections every 8 weeks. The recommended dose is every two weeks after the initial 2-3 infusions. When I first went to injections my pharmacist and nurse queried the dosage because it wasn’t stated so they rang him to confirm one pen every 8 weeks. He has basically under prescribed entyvio. My symptoms have gotten worst within the last 3 days. A lot more abdominal pain and more blood. I went to fill my script for budesenide and no pharmacy had it available. I was able to get compassionate medication off the hospital until my pharmacy can get the medication. Again no directions on the script so I’m currently taking 2 tablets one morning and one night. So far they’re not helping. My question Is has he jeopardised the chances of entyvio working again? It was obviously starting to work when I was receiving the correct dose. This year has been difficult enough without more incompetence. I feel like I’ll never get better. People question my anxiety when all I’ve dealt with is incompetent Drs

Post Edited (Theanxiousaries) : 7/24/2022 6:25:31 AM (GMT-7)

Posted 7/24/2022 1:48 PM (GMT 0)
I'm sorry you are flaring.....tell us more about the 3 calproctein results as they seem so odd....over what period were they done?....did the high results correspond to bad symptoms and did the 28 correspond to a period when things were good for you?....maybe then we can have a better idea of whether Entyvio was working for you

what doze of Entyvio were you on every 8 weeks?
Posted 7/24/2022 1:59 PM (GMT 0)
Yes the high results did have worsening symptoms. I was getting formed stools, no blood, no pain. Still having urgency. The calprotectin were done 2-3 weeks apart. My symptoms have progressively gotten worse over the last 4 weeks. The infusion dose is 300mg. The pen is 108mg. I had one pen over the last eight weeks

Post Edited (Theanxiousaries) : 7/24/2022 7:22:18 AM (GMT-7)

Posted 7/24/2022 2:30 PM (GMT 0)
I posted on entyvio warriors and most said around 5 months seems to be when you start to see results but not to give up for atleast a year. I felt I was getting results. Slowly but Ive been off prednisone for roughly 3 months so far so entyvio had been my only medication. Should I give the budesenide longer or should I go straight to pred? I’m scared of being in a flare. With the pancreatitis and PE last time. I don’t want to be on prednisone either. I’m just so worried. It’s so frustrating, especially when you’re treated like a difficult patient if you ever question a Dr. I will be changing my Dr. I don’t think it’s an exceptable mistake. My pharmacist who is amazing is constantly contacting him in relation to my medication Because he puts nothing on the script except the medication

Post Edited (Theanxiousaries) : 7/24/2022 7:38:37 AM (GMT-7)

Posted 7/24/2022 3:48 PM (GMT 0)
TAA, your doctor did not under-treat you with the Entyvio, he went by the standard protocol after the loading doses, 1 injection every 8 weeks. You can verify what I am saying by going to Entyvio's website. I checked other websites & found the same thing.

If you have added any new supplements, perhaps take another look at them too.

If you are concerned about antibodies, do a test before your next injection is due that way you will know for sure.

TAA, I had a thought & checked Australia's website, I stand corrected, they advise 108mg injection every 2 weeks after the loading doses. I am thinking you live in Australia?
Posted 7/24/2022 3:51 PM (GMT 0)
Every 8 weeks is for the Entyvio infusions after the loading doses. You are the first person I have seen here who is getting the injections. You might want to call the Entyvio patient line, explain to them the prescribing error and ask them if you need to go through the loading doses again. How long has it been since the last loading infusion of 300 mg?

Budenoside is usually 9 mg/day -- verify with the doc.

These are major problems with the doc and definitely merit a change. With this disease you need to find a doc you can trust and who welcomes questions.
Posted 7/24/2022 3:57 PM (GMT 0)
I don't know a lot about the injections -- not sure it's available in the U.S. yet, but you should probably get a blood test to make sure you didn't develope antibodies. That would be done right before you next injection.

So sorry this happened to you.

Susie -- TAA is not in the U.S. and I did read that Entyvio is coming out with a pen for injections instead of infusions. If the dosage is different that would explain why the pens are supposed to be every 2 weeks
Posted 7/24/2022 5:45 PM (GMT 0)
I know nothing about the pens either. But I do know that entyvio dosage is 300 mg every 8 weeks. So if you’re only getting 108 mg every 8 weeks then you are definitely undertreated. Contact your dr immediately!

That is so frustrating that your dr is not prescribing your medication right. Cc had a good idea to contact entyvio and ask about loading doses. Although in the US that would be a major problem With insurance coverage I’m sure.

I hope you get it straightened out soon. I would give the budenoside at 9 mg a longer chance to kick in. You could also add in the budenoside foam which I found helpful for pain and urgency.
Posted 7/24/2022 5:52 PM (GMT 0)
@ CCinPA, I am thinking TAA may live in Australia, not positive. However, I looked on the Australia website & they recommend 108mg injections every 2 weeks & I added this to my original post.
Posted 7/24/2022 11:21 PM (GMT 0)

FlowersGal said...
I know nothing about the pens either. But I do know that entyvio dosage is 300 mg every 8 weeks. So if you’re only getting 108 mg every 8 weeks then you are definitely undertreated. Contact your dr immediately!

That is so frustrating that your dr is not prescribing your medication right. Cc had a good idea to contact entyvio and ask about loading doses. Although in the US that would be a major problem With insurance coverage I’m sure.

I hope you get it straightened out soon. I would give the budenoside at 9 mg a longer chance to kick in. You could also add in the budenoside foam which I found helpful for pain and urgency.


Exactly. I did check the entyvio website and it’s one pen every two weeks at 108mg
Posted 7/24/2022 11:47 PM (GMT 0)

CCinPA said...
Every 8 weeks is for the Entyvio infusions after the loading doses. You are the first person I have seen here who is getting the injections. You might want to call the Entyvio patient line, explain to them the prescribing error and ask them if you need to go through the loading doses again. How long has it been since the last loading infusion of 300 mg?

Budenoside is usually 9 mg/day -- verify with the doc.

These are major problems with the doc and definitely merit a change. With this disease you need to find a doc you can trust and who welcomes questions.


Thanks I thought it was 9mg but didn’t want to go against what the pharmacist had put in the bottle in case.
Posted 7/24/2022 11:48 PM (GMT 0)

straydog said...
TAA, your doctor did not under-treat you with the Entyvio, he went by the standard protocol after the loading doses, 1 injection every 8 weeks. You can verify what I am saying by going to Entyvio's website. I checked other websites & found the same thing.

If you have added any new supplements, perhaps take another look at them too.

If you are concerned about antibodies, do a test before your next injection is due that way you will know for sure.

TAA, I had a thought & checked Australia's website, I stand corrected, they advise 108mg injection every 2 weeks after the loading doses. I am thinking you live in Australia?


Yes I’m in Australia
Posted 7/27/2022 4:41 PM (GMT 0)
TAA,

Checking in on you. I hope things are going better and you have gotten some answers.

Please let us know how it goes.

Clo
Posted 7/31/2022 6:05 AM (GMT 0)
I could have written your sentences about doctors' incompetence and resulting a xiety myself. I completely feel the same way! Budesonide is usually taken as 9 mg all in the morning, just FYI since your doctor was too incompetent to give you directions.
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