Dificid taper

Treatments, possible treatments, unsubstantiated/unproven treatments. Consult your doctor first.
PattieF
Regular User
Posts: 53
Joined: Thu Sep 01, 2016 3:12 pm

Re: Dificid taper

Postby PattieF » Fri Dec 09, 2016 5:03 pm

Nanci T - thanks for the input. Yes, this drug may be expensive, but after 7 months and 3 rounds of meds not to mention the expensive probiotics, germicidal bleach and bleach wipes... it may have been cheaper in the long run to start with this drug. I do have insurance but the co-pay was still pretty high. Worth it if it works. I hope this course works and there are no more relapses!

Musings/Lauren: good luck with your treatment plan. I hope it works for you. Keep me posted. I'm right behind you now. Just took my first dose. Sounds like you have a reasonable doctor who is willing to listen and work with you.

Amg: you are so right! Rant away! I guess if this standard 10 day course doesn't work for me I will have to try to send that information to my doctor. I shouldn't have to do that since in my humble opinion he should be up to speed on the various treatments of an illness he is seeing patients for but... I really do appreciate the information!

I was doing really pretty good on the Vanco taper so I booked the trip to see my son over the holidays. I really think my few days of depression set this off again. Or maybe it was the illness coming on again that set off the depression? Naturally the place we booked wouldn't refund my payment. I did purchase cancellation insurance but it sounds like they require a lot of jumping through hoops in order to get a refund. After my battle with the doctor's office yesterday I am not in the mood to jump through hoops so we are going to try to make the trip. It's a 10 hour drive.

Thanks again for listening and helping. Don't know what I'd do without this help. Here's wishing good health, happiness and vitality to all of us for the new year.

NanciT
Long Time Contributor
Posts: 3035
Joined: Thu Sep 18, 2014 12:01 pm

Re: Dificid taper

Postby NanciT » Sat Dec 10, 2016 12:08 am

Pattie

The standard treatment is generally to start with Flagyl, then onto Vanco, then Dificid. This has been discussed many times on this board. I think we all agree Flagyl does work for some but for many like myself it is a very harsh drug. It made me so very sick. The Vanco is the next step because it has also worked for so well for so many. Dificid being the most costly drug is often refused by the insurance companies unless the others have been tried. This is just cases I have seen and also myself.
I was on medication for 10 months because I could not get in with a GI who did FMT's. I finally got in and he is very well known in our area (For FMT's) it took 4 months to get the appt so there was no option for me and he agreed that is why my insurance probably approved the refills. He told me at the time (2014) he had never seen anyone on a long Dificid taper.
Most can usually get the initial 10 days, it's the taper doses that can become the problem.

I agree with you, if the insurance companies took into account their cost of taking care of CDIFF patients and ALL the cost, they may reconsider and there would be alot less suffering. I was in the ER more times than I can count until a smart ER MD found the Vanco was lowering my potassium to dangerous levels.
There is a great deal of education needed for medical professionals, they do not understand this illness unless they have had it.
Wishing you the BEST with the Dificid, hopefully this will be the end of CDIFF for you
NanciT

Bobbie
Administrator
Posts: 12688
Joined: Sat Aug 06, 2005 8:00 pm

Re: Dificid taper

Postby Bobbie » Sat Dec 10, 2016 2:08 am

Pattie,
Agree with NanciT. Many docs do not know how to treat relapsing c diff. If yours does not, find one who does.

PattieF
Regular User
Posts: 53
Joined: Thu Sep 01, 2016 3:12 pm

Re: Dificid taper

Postby PattieF » Fri Dec 16, 2016 7:11 pm

amyg:

Thanks for that info... I will share with my GI doc if the 10 course of Difficid doesn't work. I guess we all have to advocate for what will work for us best.

I'm concerned that the Difficid is not working or that I just need more than the standard 10 day dose. The first few days I was good, having only one BM a day. I was almost constipated - but then started eating an apple a day and that made me feel like I was almost normal. I saw a naturopath who upped my Florastor and also put me on VSL#3. Then, I tried a bread alternative and some cheese (very small amount) the other day, and that seemed to set off something. No watery D but multiple trips all times of the day. And gut aches again. Yet the first BM of the day seems more normal than it has been in 7 months!

I'm hoping that maybe my body is just expelling all the bad bacteria? I pray this is true! Anyone else had similar experiences with Difficid? I haven't seen any comments about this in my search.

Couldn't cancel my trip without it costing a ton of money so I am concerned about the 10 hour road trip each way. We will probably break it down to 2 days to make it easier. I'm praying there is no relapse or bad symptoms while I am out of town... UGH.

Anyway, thanks for listening and being the voices of hope and reason for me. Pattie

NanciT
Long Time Contributor
Posts: 3035
Joined: Thu Sep 18, 2014 12:01 pm

Re: Dificid taper

Postby NanciT » Sat Dec 17, 2016 11:27 am

Pattie
During any of these treatments, BM's can be all over the place. The fact you had a "normal" one is wonderful! It took me months to get there. I had no issues with Dificid the first 10 days, only after I relapsed and went on it 3 months. That is when it was very difficult for me to tolerate.
Give your self time, finish the 10 days and hopefully that will be it for you!
NanciT

amyc
Long Time Contributor
Posts: 2084
Joined: Thu Nov 10, 2011 8:15 am

Re: Dificid taper

Postby amyc » Sat Dec 17, 2016 3:44 pm

Since you were doing fine until you changed your diet and probiotic regimen, I'd recommend just returning to what you were doing before. Some people don't do well with probiotics. it's also possible the bread replacement bothered your gut.

georgina
Long Time Contributor
Posts: 2635
Joined: Sat Sep 12, 2015 10:07 am

Re: Dificid taper

Postby georgina » Sun Dec 18, 2016 1:44 am

You may be lactose intolerant since that small ammount of cheese flared up your IBS, or maybe one of those probitoics does not agree with you.
Agree with Amy , stick to the diet you had before , and when you are adding foods back into your diet do it slowly , one new food per day.

PattieF
Regular User
Posts: 53
Joined: Thu Sep 01, 2016 3:12 pm

Re: Dificid taper

Postby PattieF » Mon Dec 19, 2016 12:50 pm

Took my last Difficid yesterday... fingers crossed everyone (pray, positive thoughts, whatever you got I'll take)! We start our road trip on Thursday - trying not to worry about that.

I had a really bad morning the other day... 6 or 7 trips to the bathroom and oh the pain. I was in panic mode until I looked at the responses here. Especially Nanci saying BM's all over the place on the meds. I was so tired of bland food that I made some lemon thyme chicken the night before. Well, that was a bad idea. I would not have thought this would disagree with me so violently! Anyone else have reactions to simple spices like thyme? I do put some in the soups I eat but maybe it's the fact that they are more diluted. I had been eating an apple every day. But maybe that is too much too... maybe every other day is best.

I so want to add stuff back to my diet, or try different ways of removing things that may still have a negative effect on my gut. But I am done trying at this point! And pretty tired of the 'what could I have done wrong' issues. The diet the naturopath wants me to try eliminates the main things I've been eating: oatmeal, white bread, rice and potatoes. I told him those are what keep me from starving! but I thought it worth a try to get healthy again... thus I tried making a bread alternative with coconut flour. I drink coconut water every day mixed with apple juice and Benefibre without problems. Like I said... I'm done. Have to stick with what works and pray that this is the last relapse! I am fairly confident that it is not the increased probiotics causing issues. I do try to add one thing at a time in order to get an idea what I can tolerate - but there's always second guessing: is it the meds, the chicken, the apple, the probiotics?

The medical profession needs to get up to speed on this illness! The pharmacist had not even heard of Difficid before! I feel bad for those who had this illness before - when there was even less knowledge about c-diff. I scheduled with the naturopath before the onset of the 4th relapse hoping to get answers about possible allergies, vitamin deficiencies and ways to normalize my gut. I know all these meds are having a detrimental effect.

The saga continues.
Happy Holidays and good health to everyone.


Return to “Treatments”



Who is online

Users browsing this forum: No registered users and 11 guests