Dificid side effects

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Bel61
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Dificid side effects

Postby Bel61 » Wed Apr 18, 2018 5:26 pm

I know I am not supposed to be on posting more than one time a day but since I am still fairly new I will take a chance.
This is my second full day of dificid and the side effects have hit me hard. Stomach and esophagus have severe burning sensation. Also nausea and intestinal pain is bad. I can barely eat. I am so shaky I am sitting and laying down. I know some of this is anxiety but most of it is the difficid. I felt fair yesterday but within an hour and a half after my morning dose this morning the intestinal pains started with the nausea and stomach burning, It reallyis quite bad. I didn't feel this bad on vanco although it wasn't pretty either. I am out of options and have to be on something until my fmt on the 4th.Has anyone had the side effects get better during dificid treatment or is there something I can do to help lessen these severe effects? It is even burning in my chest.
I have taken nausea pills earlier and am taking a bit of liquid Maalox but nothing seems to help. Any advice would be so welcome. Thank you in advance

Bel61
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Re: Dificid side effects

Postby Bel61 » Thu Apr 19, 2018 1:50 am

Well I took my night dose of dificid and within 20 minutes the burning stomach pain started and spread throughout my chest. My right side is hurting so bad I can barely think straight. It has been an hour and a half and the pain is still very severe and am feeling quite ill. I will be calling the doc tomorrow but would like some advice. Has anyone on the board ever had to stop taking dificid and go back on Vanco with success? I do not think I can take this any longer. This is almost as bad as the c-diff without the D. I feel so ill. As stated above in original post has anyone had severe side effects from dificid but pushed through and the side effects gotten better? I called the pharmacist earlier today and asked if the side effects would lessen and of course she said she doubted it but was not sure as she doesn't recall anyone else from this area being on dificid so that was no help.
My FMT is in two weeks and I don't want to jeopardize the outcome. Please help!

roy
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Re: Dificid side effects

Postby roy » Thu Apr 19, 2018 3:45 am

Anything is possible but I have not seen anyone here say Dificid caused that sort of instant severe reaction.

MKW
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Re: Dificid side effects

Postby MKW » Thu Apr 19, 2018 6:04 pm

Hi, if you are having an FMT does it really matter what drug you are on beforehand? How did you respond to Vanco or have you taken it? You just need to kill the CDiff as much as possible before the procedure.

Bel61
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Re: Dificid side effects

Postby Bel61 » Sun Apr 22, 2018 11:49 am

In answer to your question, yes I have been on Vanco for almost 2 months with 2 attempts at tapering. Both times when I got to 2 pills a day for a week, the diarrhea and intestinal pain would escalate. The last taper is when the vanco started making me feel nauseated with intestinal pain. I waited for 7 days to see if my body would adjust but ended up with Bristol 6 stools 8-10 times a day. That is when they put me on dificid. I did ok for 3 days but had such severe stomach and intestinal pain I did not sleep for 24 hours. I ended up at the er and the doc there called my gi doc and they decided to put me back on the vanco 125x4 per day. I have been on the vanco for 4 days but am now experiencing the severe burning stomach and intestinal pain, along with the nausea. This pain is just like when the c-diff hit. It appears to be getting worse as the days go by although I have not had as many movements, 3-4 per day usually in the morning. It is still Bristol 6 but the pain is bad.
I am freaking out because I am scared that hopping from one med to another has made the c-diff stronger. I am praying I can get through the next 10 days until my fmt. I am so discouraged right now although I know I need to be strong.
I had to get anti-anxiety meds as I was totally freaking out with all the pain. I was thinking it might be ibs but it is constant since yesterday. I thought it was gas but cannot pass gas or even burp although I hear and feel the rumbling and liquid sounds.
I don't know if the c-diff is breaking through the vanco or if it is the Vanco itself causing this. The burning intestines is severe and doesn't let up along with the pain. I am desperate for the fmt to work as the med side effects are almost as bad as the disease. I know I have to take them as the alternative is bleak.
I so desperately need encouragement and prayers as does everyone that is fighting this horrible illness. This board is my lifeline and I thank each and every one who is kind enough to answer.

MKW
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Re: Dificid side effects

Postby MKW » Sun Apr 22, 2018 2:40 pm

Hi, I am so sorry you are going through this. I will pray for you, and I can tell you I don’t think I’d make it without praying since this ordeal happened to me. I relapsed three times and was cured by an FMT in March 2017, but have suffered with ibs and SIBo since.
I am 5’4” and got down to 102 after my second round of Flagyl. I am actually down to 105 again with my current problems and it’s scary to be so underweight.
I am not the best at medical treatment suggestions, but am going to mention two things I have seen in this board over time.
First of all I’ve seen many posters who have had to take the higher dosage of Vanco, 250 mg to keep their symptoms under control.
Second, many doctors use some type of toxin binder in addition to the antibiotic to minimize mucosal tissue damage during treatment. Try to look that up. Also, drugs like bentyl can help with pain.
When this happened to me and I ended up with meds failing and had to schedule an fmt, I felt doomed like I was going to be a hopeless case. I had to go out of town for my FMT, no one in my city even does it.
But, I can tell you since I’ve been on this board since August of 2016, I have seen many posters who had very unsuccessful medication treatment be cured by FMT. Sometimes it takes two btw.
Try to be hopeful. FMT has an 85-90% cure rate.
You may have some crazy stuff go on after!!! It’s not perfect. But it stops the c Diff recurrence cycle.
-melanie

Bel61
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Re: Dificid side effects

Postby Bel61 » Sun Apr 22, 2018 3:16 pm

Thank you Melanie for the encouragement. I might have to call my dr and ask about increasing the dosage. I do get concerned about high dosages as I now only weigh 93 lbs. I am 5' 2" and look pretty bad. Although if the higher dosage would help that would be good. I just get so confused about all this. I also have heart arrhythmias that seem to get worse when I take the vanco. Of course the anxiety isn't helping either. One of the side effects of vanco is heart palpitations but they got better on my first round of Vanco so I don't know. As you can see I am apparently quite anxious about everything.
I thought I was a pretty strong person emotionally but this has been such a challenge. I became somewhat OCD when my husband was on chemo and had to disinfect everything so he would not get sick and now I am back to being somewhat of a germophobe, afraid I will get something else on top of this.
I also have to travel a long way for the fmt as we live in a very rural area on a small ranch in the middle of nowhere.
I will look up the toxin binders as I have seen them mentioned on several posts and will certainly check them out. In your opinion which one is the one that is used most often? Also I have read on here that a few people have had a hard time with Vanco causing the pain and nausea. Another lady said she had diarrhea the whole time she was on Vanco, so I am trying to suck it up and keep plugging away at this. I pray for all of you as well in hopes that you will continue with strength, and good health, and keep this board going for many years to come.

MKW
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Joined: Mon Sep 26, 2016 9:49 am

Re: Dificid side effects

Postby MKW » Sun Apr 22, 2018 3:58 pm

I am uncertain about which toxin binder is most used or most effective. I do know there is one (maybe questran?) that can bind to the Vanco and make it less effective, so it has to be taken between doses.
Hopefully someone more knowledgeable than me about it will comment! My current new pcp says he gives people activated charcoal with initial Flagyl treatment, but he isn’t experienced with recurrent sufferers.
And, I am on Klonopin since all this happened to me so totally understand about the anxiety. I have experienced heart palpitations and that sensation is so scary.

NanciT
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Re: Dificid side effects

Postby NanciT » Sun Apr 22, 2018 5:31 pm

There is a gut/emotional relationship that nearly all of us have gone through with this, it causes terrible anxiety. Especially of you are one of us who relapsed several times. It's a constant worry but once you get through the FMT things will improve. It all takes time and when you are feeling terrible...its hard to deal with.
I was on Vanco first for 14 days, then a 3 months taper. I had nausea and was helped a great deal using "Sea Bands", they worked well for me and I still wear them on and off. I also wore them the months I was on Dificid. You can get them at any drug store.
Hoping the Vanco starts to help and you can get that FMT. Wishing you the best
NanciT


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