3rd relapse, seeking advice

[GtrGrl]

Female, 40, UK.

I’ve relapsed for the third time in 6 months after 2 rounds of metronidazole, 2 rounds of fidaxomicin (Dificid), a round of vancomycin, an FMT, a month-long vanco taper and now I’m in hospital on yet another course of vanco.

They’re talking about what to do next; I was hoping for another FMT but they’ve said this can’t be funded (probably due to Covid) so looking at another 10 days of fidaxomicin. Since I’ve relapsed twice on this length of prescription, I’m not feeling hopeful.

I know most users here are US-based but wondered if anyone knows of any private specialists in the UK? If I’m going to get the extended course of fidaxomicin that others have had success with, I suspect my only option is going to be to pay for it.

I’m it very hard not to lose hope right now and thinking this is never ever going to end. I did all the ‘right’ things in terms of diet and probiotics and it still keeps coming back. My anxiety is through the roof which doesn’t help but finding it impossible to keep it at bay, especially when I feel I’m having to fight to be heard (I won’t recount the experiences I’ve had with various consultants but they have not been good).I’ve asked for anti-anxiety meds but they keep passing the buck between gastro, ID and mental health teams about which ones I can safely take.

Also, Florastor is unavailable in the UK; I’ve been taking Bio Kult but if anyone has found something more effective, please let me know.

Thank you for any help/support.

[beth22]

I'm so sorry that you are going through this. I had to have multiple rounds of vanco. Dificid was not out yet. The vanco did not stop the relapses so I had an FMT as well. The first FMT was done through a naso gastric tube and that did not work either, but I had another via colonoscopy and that did work, but I developed SIBO after all the rounds of meds, etc. I had to treat that with Xifaxan. I did wind up relapsing later on again and had another FMT that worked. I was tested for problems with my immune system, but nothing showed up. I assume that your doctors have looked into that.

I would try the Dificid taper. One of our moderators has had success with that when all else failed. You can always try for another FMT down the road, but I would probably opt for that. If you do have another FMT, perhaps you can use a family member that you know has not had Covid/ has been tested, etc. I used my husband for my first FMT and my daughter for my second one.

[roy]

Look for Saccharomyces Boulardii in your pharmacy, Holland and Barrets, Amazon etc.
It's the same as Florastor which is just a brand name.
By relapse do you mean full on return of symptoms?

Start your search for the best Drs in the UK here.

https://medicinehealth.leeds.ac.uk/medi ... ark-wilcox

[GtrGrl]

Thank you for your replies.

Yes Roy, full on relapse: all the symptoms + positive test. Thanks so much for that link, I will bookmark it. I have some S Boulardii but have been nervous about dosage in case I cause yeast issues. I was taking two a day but still the relapse happened and I haven’t touched it since in case there’s any internal damage which means I absorb it (I have seen your warnings about this.)

FMT may now be on the cards and I think I will take it if so but I wondering if I can get on the Dificid first to give it the best chance. At the moment they’re still insisting on vanco, probably for budgetary reasons.

My first FMT was naso gastric too, Beth. They had to put the tube down twice, second time it got caught at the back of my nose but the nurse kept on shoving, I kept gagging ... horrible! I have been referred for immunological tests but they haven’t happened yet.

Like most people at some point, probably, I’m having a hard time accepting this is happening in my life.

[roy]

For the preperation before FMT the aim is to clear as much c.diff as possible and also some of the natural flora so as to make space for the newly seeded FMT bacteria to grow.
Probably the best med for that job might be vanco not dificid.

[GtrGrl]

I see the logic there. I’m nervous though because first FMT preceded by vanco failed. I’d also had fidaxomicin shortly before that so this seems to be a stubborn case. I’m very worried.

I note that the National Institute for Health and Care Excellence are reviewing their guidelines at last and metronidazole no longer appears. I hope the draft gets approved, although still only says 10 days’ fidaxomicin so no room for flexible prescribing when needed:

https://www.nice.org.uk/guidance/GID-NG ... -guideline

[roy]

Ask your Dr to consult with Professor Wilcox.
I gave you the link.
If successful and they do manage to get his team involved he is a Dr that " thinks outside the box".
If his team says something is needed such as increased length of meds then your Drs wont argue.
He has plenty of experiance and has written many papers on various treatment regimes, including extended courses of Dificid

[NS789]

GtrGrl, I had a very stubborn case too. I relapsed 5 or 6 times and was running out of treatment options (FMT wasn't available at the time due to Covid). What finally cured me was an extremely long course of Dificid. About two months in total. I know the effects of using Dificid for that long haven't really been studied but it worked for me and I'm so glad I tried it. The standard 10 days just wasn't cutting it for me.

Praying that you find an option that works for you soon! It's very discouraging when you feel like you've tried everything and you just can't seem to beat it. But something *will* work eventually. Keep faith and take care.

[beth22]

I had to prep with vanco before the FMTs as well. With the colonoscopy I stopped the day before the procedure.

[GtrGrl]

Thanks all. Really despairing this morning. They want to send me home based on my blood tests but I still have strong symptoms. I finally looked at myself in the mirror and it was shocking, you can see my chest and hip bones and ribs; I’ve lost more than 2 stone (12kgs) since this started, more in the past week since I’ve been in hospital, and am struggling to get enough calories whilst also maintaining a bland diet. I feel like I’m having to fight to make my case and it’s so stressful.

NS789 I think when you’re at that point the potential long term effects can’t be a worry, you have to take what will work there and then. I’m glad it cleared it for you.

Because I don’t know how soon the FMT will be booked in (it’s at a different hospital) I don’t know how hard to fight for the Dificid here. I might not get another shot at the FMT if I don’t take it now but but if Dificid isn’t the right prep I don’t want to use up that option, if you see what I mean. I also don’t want to go home while I still have these symptoms and risk passing it to my family but the vancomycin just isn’t clearing it. Argh!

[GtrGrl]

roy wrote:
> Ask your Dr to consult with Professor Wilcox.
> I gave you the link.
> If successful and they do manage to get his team involved he is a Dr that
> " thinks outside the box".
> If his team says something is needed such as increased length of meds then
> your Drs wont argue.
> He has plenty of experiance and has written many papers on various
> treatment regimes, including extended courses of Dificid

I shall keep this in my ‘back pocket’. I think trying to get the consultant I’ve been given to confer with anyone is highly unlikely.

[Ali-Mar]

Hi GtrGrl,

I hope you are doing better now. Did you have the FTM?

[GtrGrl]

Thanks, Ali-Mar. I haven’t had it yet.

I hope you’re doing well.