Bad Reaction to Urommune

[Pumpkinlately]

Hi, I've been taking Urommune for 7 weeks and it's been such a rollercoaster that I thought I had Covid. I'm worried about continuing. Has anybody else had a really bad reaction to it? There seems no info online to suggest awful side effects. Thanks!

[Jess-UKMasto Partner]

I've only recently heard about Urommune as a treatment for bladder infections, but I don't yet know of others with mast cell diseases who have taken it. I did just see this discussion of it on HealthUnlocked in a bladder health group. You may find more people who have taken it there who might share your experience. It would be really unfortunate if it isn't something tolerated as I can see it could be such a help! healthunlocked.com/bladderh...

I'd be very curious to learn what you find out since you may be one of the early people trying it but other would want to know about your experience!

I'm so sorry you're feeling so unwell : (.

[Pumpkinlately in reply to Jess-UKMasto]

Hi Jess, thanks so much for replying. I'm one of those who have MCAD connected with EDS, and we often get chronic cystitis as part of the package. Although Urommune is primarily prescribed for bladder issues, one of the EDS docs uses it in conjunction with MCAD treatments as he's found that persistent infections keep triggering the mast cell over-response. I thought I might be having a bad reaction to it due to MCAD, as I've responded badly to other vaccines, so I posted here and on the EDS group rather than on a bladder-related group, but it might be worth trying on one of those, too! Thanks again.

[Jess-UKMasto Partner in reply to Pumpkinlately]

Regarding the bladder it is also sometimes the case that folks with mast cell diseases have an increase in mast cell number in the bladder and have symptoms of interstitial cystitis where there isn't infection found--- but also those with the deep-seated infections in the bladder wall, I have heard from patients. I wonder if the well-known urogynaecologist in London who sees many people with the triad MCAS/EDS/POTS has seen this kind of reaction with Urromune.

[Pumpkinlately in reply to Jess-UKMasto]

Hi Jess, Yes, he's my doctor, and is fantastic! The official, usual side effects are minimal, but I've often found that feedback about unexpected symptoms reaches the forums before the doctors, so thought it was worth asking. Thanks for your thoughts!