Just Got Approved for VOWST

[alex77]

Hi everyone -

Sorry it's been a while since I've posted any kind of update, been a very interesting past few months.

So I relapsed this past February for the 4th time, & my doctor put me on a Dificid taper. I've been on this taper sinceeee the beginning of March & am still on it today. He gave me a full 10 day course & then I have been on 1 DIficid every other day since. Probably on my 4th or 5th bottle at this point.

Today I was officially approved for the VOWST treatment & somehow someway I don't think I'm going to have to pay a penny for it. My insurance approved it but I am also apparently getting the copay covered by VOWST's patient assistance program. If anything I'll have to pay a couple hundred or even a thousand dollars for the copay if that doesn't work out, but at this point I could care less.

Since being on the taper I would say about 80% of my symptoms have disappeared & have not returned. If I eat something stupid like a super greasy pepperoni pizza or too many fries it'll flare up for a day or two but then it goes right back to 'normal'. Which is incredible for me because I can eat more random foods now than I have been able to during this entire nightmare & not have pretty much any symptoms.

This gives me hope that VOWST is going to rid me of this for good & leave me in good standing PI-IBS wise because the Dificid seems to have taken care of a LOT of my IBS symptoms somehow, but I'm not questioning it.

I also take 1 S.Boulardii Pure Encapsulation (these are on Amazon) a day, & I also attribute a lot of my IBS symptoms disappearing to taking this pill as well. I prefer this over Florastor because those made me SICK & I will never touch them ever again, these did not do anything like that & 1 a day seems to be the perfect dose for me.

Anyway, I will update you all after I finish my VOWST treatment & let you all know how it works!

Wish me luck <3.

[alex77]

Update:

Just got a call from 'Amber Pharmacy' - the pharmacy they're using to get me the pills, they're only going to cost me $250.

This is without VOWST's patient assistance program, & I will gladly be paying that copay without using the program.

I don't know if you all know, but the cost for VOWST without insurance is somewhere between $17,000-20,000. ]

I'm pretty positive my insurance is covering all of it & that's why I only have to pay the $250 copay, either way I feel oddly blessed.

Will keep you all updated as I go along.

[beth22]

I'm glad you were approved and do let us know about the coverage. Since this is new, we have not had feedback on it.

[NanciT]

Please DO come back and let us know how it goes. It took me a long time to feel better after my Dificid taper, I had IBS for a long time. I am very curious about this new medication which is suppose to bring you back to normal flora after you complete the Dificid or which ever antibiotic you are given. I do wonder once you take them if you notice a big difference in how your gut feels. I also wonder if this would reduce chances of getting CDIFF if you have to take regular antibiotics for an infection.

Very excited to hear about it and wishing you the BEST!!

NanciT

[roy]

Good news that it's being prescribed and it's the first step of the end of all the problems of getting FMT approved as a medical procedure.
Yes, they are selling very expensive concentrated poop pills and calling it a drug!

[alex77]

beth22 wrote:
> I'm glad you were approved and do let us know about the coverage. Since
> this is new, we have not had feedback on it.

Thank you I will!

I am getting it for $0, which is absolutely incredible & I do not know how that even happened, but I'm not questioning it.

Once I finish the treatment I will let everyone know how I'm doing & side effects (if there are any) & all that :).

[alex77]

NanciT wrote:
> Please DO come back and let us know how it goes. It took me a long time to
> feel better after my Dificid taper, I had IBS for a long time. I am very
> curious about this new medication which is suppose to bring you back to
> normal flora after you complete the Dificid or which ever antibiotic you
> are given. I do wonder once you take them if you notice a big difference
> in how your gut feels. I also wonder if this would reduce chances of
> getting CDIFF if you have to take regular antibiotics for an infection.
>
> Very excited to hear about it and wishing you the BEST!!
>
> NanciT

I absolutely will thank you! My doctor & I are in the mentality that due to the fact I've been on 2-3 full doses of Dificid & it's come back every single time, it's most likely going to return after the taper at some point as well.

I've been on the taper for 4 months now, but we still don't trust it. & since I got vowst for free, why not at this point.

Thank you so much for your kind words though & I will make sure to let you & everyone else know how I'm doing after the treatment!!

Very excited for this nightmare to be over. Not how I expected to go into my 30's lmao.

<3

[alex77]

roy wrote:
> Good news that it's being prescribed and it's the first step of the end of
> all the problems of getting FMT approved as a medical procedure.
> Yes, they are selling very expensive concentrated poop pills and calling it
> a drug!

Thank you! I got prescribed Reyboyta at first, but no one would help me cover it, & I wasn't thrilled with the poor outcome %, so I asked for VOWST instead.

Somehow someway, I got what I wanted & got it for free as well. Still can't wrap my head around that but I'm not complaining lol.

I would do/take anything at this point to get rid of this infection so my brain is completely numb to the fact that it is poop in a pill I truly could care less, as long as it makes it go away & never come back :').

[NanciT]

Please let us know how you do with the pills! It appears simple enough.
I don't imagine it actually states CDIFF will never come back?? That is not something I have read when you mentioned this new product. Antibiotics can cause CDIFF to return....

Report back how it goes...wishing you the best with it


NanciT

[GtrGrl]

Amazing! I had to have an up-the-nose FMT the first time and the doc said to me as it went down the tube, ‘think of it like a healing milkshake’. So I did. We’ll do these things if it means we get better. Wishing you all the best!

[alex77]

Hi everyone!

Just wanted to give an update.

Today was my last day taking VOWST. So far so good! No real side effects / symptoms except for some random cramps here & there. I've been able to just continue eating what I've been eating prior to doing this with no real issues so far which is awesome.

The worst part was the prep, but even then that wasn't that bad.. not like I'm not used to going to the bathroom 900 times a day anyway at this point hahaha.

My doctor has had me stop taking my S.Boulardii & half an Imodium a day pretty much permanently. They don't want any stomach related medication to interfere with VOWST. Which I totally get, hopefully one day I can go back to taking them if need be because they both pretty much fixed my stomach during my Dificid taper & I had barely any symptoms at all.

Or maybe I just wont ever need them again anyway, that would be ideal! Anyway, I'll keep everyone posted if I have any weird side effects or just on how I'm doing as this process goes along the next few weeks/months. Praying I just bounce back & never have to deal with this ever ever EVER again.

Feel free to ask any questions you may have, I'll try my best to answer them! :)

[beth22]

Thanks for the update and I hope your next post will tell us that you are symptom free and don't need any other meds!

[GtrGrl]

Glad to hear you are doing well. This must give hope to others. I wish this this treatment option was available in the UK, maybe in time . . .