Allergic symptoms after VOWST FMT - could they be related? Outcomes

[modean]

I don’t even know where to begin. I’ve had recurrent CDiff for over a year, and was finally approved to receive VOWST in July of this year. I completed the final day of capsules on August 3. All seemed well, until two weeks post-transplant when my body just randomly erupted in hives + angioedema. My joints swelled up, my eyes swelled, my joints felt like they were on fire and I had giant, painful lumps all throughout my body. I went to the ER a few times, and the only thing we can think is that it is due to my FMT. I have been on Zyrtec now to help control it, and tried to taper off, but the hives came back.

I feel like I’ve tried pretty much everything I can think of. I did the standard Benadryl/Pepside/Prednisone and had two courses of that with a taper. Zyrtec finally seemed to work, but I had some less than enjoyable side-effects so I tried to taper off that as well, which is when the hives came back. I went back on Zyrtec and now the hives/angioedema seemingly aren’t going away.

Prior to the FMT, I was on Vancomycin for over a month. I’m feeling so discouraged and have no idea where to go from here.

 

[Michael Harrop]

Was there a process to report these adverse events? I've read accounts of many patients having adverse side effects from FMT and no one cared to track or report them.

You're messing with the balance of an extremely complex ecosystem that regulates the entire body. So yes, it's absolutely possible and likely for it to be related to the FMT. But VOWST is more like a human-sourced probiotic than FMT.

I think the only solution is FMT from a high-quality donor. But that's currently unavailable thanks to the FDA.

 

[modean]

Is there anywhere you’d recommend I can find people talking about adverse effects? I can only find positive results and typically studies about how FMT has helped allergies, not made them worse.

I wasn’t told about any reporting process, but if I was I would definitely have some things to say and valuable experience to share. The GI nurse of my local doctor followed up one-week post-transplant, but that was it. I didn’t hear anything from the VOWST folks aside from my case coordinator walking through the process with me.

 

[Michael Harrop]

Unfortunately, they sporadically post them in many different places, often private ones. I recently asked two of them to share their detailed experiences here on the forum but they haven't yet.

I can only find positive results and typically studies about how FMT has helped allergies, not made them worse.

Click to shrink...

You can look through the wiki to see that FMT can both transfer and cure many disease conditions; all depending on the donor.

I wasn’t told about any reporting process

Click to shrink...

That seems to be the norm, which is why this forum is important and people should be encouraged to post their experiences here. You can use the FMT Clinics section.