Entyvio and fatigue

[Snitzer1]

I had my first Entyvio infusion one week ago and the fatigue caught me off guard.

Does it go away in time and do any of you use natural treatments to regain your energy?

 

[JackG]

Snitzer1, I hope you've seen other threads with this same subject discussed. There is also an Entyvio Support group listed on the front page where its been discussed too.

I'm about to switch from Humira to Entyvio so I'm interested in your post and others about it.

 

[Snitzer1]

Snitzer1, I hope you've seen other threads with this same subject discussed. There is also an Entyvio Support group listed on the front page where its been discussed too.

I'm about to switch from Humira to Entyvio so I'm interested in your post and others about it.

Following my Entyvio infusions, I have had severe fatigue, having to go #2 up to sixteen times a day, body temp fluctuations, cramps in the lower abdomen (just above the bladder area going across the waist which required Tylenol now and then) and despite the BS my GI doctor has given me, I KNOW that my vision was better before I began the Entyvio and several other people have stated similar problems.

If your GI doctor(s) refuse to acknowledge that diet plays a part in IBS and IBD, then find a new one. I sure as hell am going to.

I am not trying to dissuade you from getting your Entyvio therapy, but to consider that this has the potential to give people PML which can demylelinate the neurons in your brain: At first, Entyvio did not list this as a possible side-effect but I recently saw a commercial for it and it listed PML as a rare but possible side-effect.

By sheer luck, when I was on Remicade (over three-years ago), it began to help me within two weeks, but I was dumb enough to stop it because I thought that my vegan (FORMER) diet had "healed me" and I can not go back on the Remicade because I have supposedly built up antibodies to it.

 

[Snitzer1]

You can actually go back on remicade even if you had antibodies and their might be a good chance that it will work again.

Both my GI doctor and his nurse practicioneer (saw them on separate appointments) told me that I should not go back on Remicade because I might have an allergic reaction to it (antibodies built up to it).

If you have any links to how and why people can go back on Remicade, please leave it.

On Entyvio's website, I just read:

"Although no cases of PML have been observed in ENTYVIO clinical trials, JC virus infection resulting in progressive multifocal leukoencephalopathy (PML) and death has occurred in patients treated with another integrin receptor antagonist. A risk of PML cannot be ruled out. Monitor patients for any new or worsening neurological signs or symptoms. Typical signs and symptoms associated with PML are diverse, progress over days to weeks, and include progressive weakness on one side of the body or clumsiness of limbs, disturbance of vision, and changes in thinking, memory, and orientation leading to confusion and personality changes. If PML is suspected, withhold dosing with ENTYVIO and refer to a neurologist; if confirmed, discontinue ENTYVIO dosing permanently."

 

[JackG]

Snitzer1, I've heard nightmare stories about all the medicines. They hit each of us different; by and large I've been lucky with Humira.

Because the majority of reports say Entyvio is targeted with little systemic impact, I HAVE to try. I don't want psoriasis' spots, rashes and sores all over my arms and face too. I sing in public and I've gotten along so far, but its getting worse. More diarrhea too, even staying away from my triggers.

I had my first loading dose today and I'm hoping for the best.

Maybe get coffee back?