Possibly starting Entyvio and low blood count

I’ve been happily in remission on entyvio now for over 6 years (actual dates are in my signature). I have no side effects. Since entyvio is supposed to target the gut it’s supposed to be less systemic and therefore more “safe” than the other biologics. I wouldn’t recommend reading all the “possible” side effects — just because they’re listed doesn’t mean there’s a very high chance that any will ever happen to you.

I remember I was very upset and worried about going on a biologic and did NOT want to do it. But I’m so happy I did. I have no dietary restrictions anymore although like you I never found a “safe” food.

Infusions are very easy. Entyvio is not weight based so everyone gets the same amount and it’s not a slow drip. So the infusion itself is only 30 minutes. I’m in and out of the infusion center in an hour or a little less.

It is slow acting. By 4 months I was in symptomatic remission but there were big improvements along the way. Some blips along the way but rectals helped tide over on those days.

Keep us updated and let me know if you have more questions.

I don’t recall about hepatitis vaccines. I looked in my chart and I don’t see that I’ve had a hepatitis vaccine. I know I had a TB test first.

My hemoglobin tends to run on the low side but it’s never been low enough that they were super worried. It’s just under the recommendations usually but that’s typical for me.

I forgot to mention that they did test me for TB..it was negative.
I was skeptical about getting any vaccines but I have since decided I would.
The amount of blood I'm loosing is so overwhelming and draining....I have no energy for anything. I've been taking iron hoping that will help.

I had the Hep A & B vaccines long before the UC diagnosis. It's just a routine recommendation in many situations such as work conditions and travel. Not sure of all the details but I didn't worry about it and am happy to be protected.
How low is your hemoglobin? Blood is one of the most disturbing symptoms. Hope you see improvement soon!
Any help from steroids (prednisone?)

It's not just the live vaccines; once you start on a biologic (or any other immunosuppressant) you may have a weaker immune response to any vaccine. Therefore the logic is to get vaccinated before starting the drug so that you can maximise your immune response. The hepatitis A/B vaccine (twinrix?) is not live as far as I can remember, but there are 3 doses administered over several months. Generally UC patients do not have the luxury of waiting 3-6 months before starting a treatment. That being said if there are any urgent live vaccines you have missed (e.g. measles?) now would be the time to do it as once on a biologic i don't think any healthcare provider will approve it. The one live vaccine which I regret not having is yellow fever because it limits where I can travel, but again it's one that needs administering 3 months before starting an immunosuppressant and I was flaring so badly it wasn't an option. I wish I had known when i was still on the gentler mesalazine drugs that I ought to prepare for this scenario in the future.

Thanks for all the replies.
Someone asked what my hemoglobin was..it was 8.2, normal is 11.1 - 15.9
Hemotocrit was 25.9 normal is 34 - 46.6
and RBC was 2.72 normal is 3.77 - 5.28
I go tomorrow to talk over a few things. I have decided to start the Entyvio when I can.
I will probably take the Hep vaccines.
I'll keep you all posted.
Thankful I found this group because no one else around me understands what I'm going through.

Midge22 said...
Last fall I had low hemoglobin (which the doc described as anemia due to blood loss) after a similar path to yours, Frustrated - flare with bleeding and similar meds ramp up. I received iron infusions (3 in total over a several months) which is a much quicker way than pills to get the iron related numbers back up. (Iron Infusion is much less of a deal than iron transfusion, just to be clear). At the same time (December) I started Entyvio, which as Flowers said, was also very easy and much less scary than I thought it would be. Unfortunately it ultimately didn’t work for me and I’ve since been switched to Remicade - jury’s still out on that. On both Entyvio and Remicade I still have blood most days. Not sure if that’s at all typical but, it’s how it is for me. Meanwhile, my hemoglobin levels remain good after my final iron infusion in May. Good luck, I hope the Entyvio works for you! Lots of people have great success with it.

Hey Midge -- what is the difference between iron infusion vs iron transfusion? When I was in the hospital they did a slow IV push of iron, but then later I had to get a 4 hour "transfusion" of iron at an infusion center.

That's interesting, Midge. I don't remember the names of what they gave me. It was 5 years when that happened. Also had 2 bags of blood when I was in the hospital.