Possible Relapse Again

[Roberta]

Thanks Roy. I've been on the chemo (pill form) for 20 years so unfortunately cannot go off. I was able to have my Primary Care doctor call in a prescription for Dificid. I took my first pill an hour ago. It's 2 x 200 mg per day for 10 days. I have uncontrollable dirrarhea with this last relapse. Every time it relapses it is always worse. The GI Doctor relayed through his nurse that I should pursue this with someone that specializes in infectious diseases. Not sure why. I tried to get into a few GI doctors and none can see me any sooner than a month from now. Hopefully the Dificid will work better than the Vanco.

[Dobies#1]

Roberta for what it's worth, I had an infectious disease doctor who came up with a plan when I had C Diff the third time. I was actually taking chemo at the time for breast cancer and had to be hospitalized because of C Diff. The doctors decided to get the ID doc on the case. I've been C Diff free for over two and a half years. Knock on wood! He decided to try a Vanco taper and pulse method and it worked.

[getwellsoon]

I did not feel well taking Dificid but most people say it didn't bother them. I am usually the odd duck. Also I developed mucous colitis and would pass clear mucous numerous times. I had attacks of this for months and the Dr. told me to take Metamucil and it worked for me. I'm sorry you are going through so much and hope this time the Dificid cures the cdiff. You have so much on your plate and I pray you start to feel better soon. Let us know how you do.

[Roberta]

Thank you every one for all of your encouraging and informative words. So far I've tolerated the Dificid well (first pill). I wonder how long it takes to start to take effect.

Carol, mucus is certainly the culprit with me too but also extreme urgency to go. When I need to go if a bathroom is not handy I will have a problem. Which I learned sadly yesterday.

I will say that every time I relapse the c diff appears to be more aggressive. It's like it gets stronger.

Fingers crossed.

[roy]

All antibiotics take an average 3 to 7 days to kick in.
Some posters said they saw no improvement while taking dificid but slowly improved after it was finished and were still cured by it.

[Bobbie]

I have been on that large a dosage of vanco but I Was not on chemo.

Continue with the doc until you can find a new one if you continue to not have faith in him.

Several on the site have had cancer and c diff.They usually c diff is worse. Dobies is one. PM her.

So sorry for all you are going through and hope you find a doc you trust soon. See the Doctors forum.

My given name is Roberta. There are not many of us.

Keep us posted.

[Roberta]

I met with my GI doctor today. Will be my last visit to him. He was annoyed that I have chosen to take Dificid instead of returning to Vanco. Threw down in front of me 20 pages of the Guidelines for C diff diagnosis and treatment (dated 2013) and told me to do as I wish as I appear to be the expert. Deep breaths. So he stated there is no proven evidence that Dificid is better than Vanco and he said to stop the Dificid and start with 2000 mg of Vanco. I explained I'm not disputing the effectiveness of Vanco for some but it has not been effective for me and this is why I wanted to try the Dificid. I have taken only two doses (200 mg) of the Dificid and my symptoms are worsening. I am not expecting them to improve that quickly but I would not expect them to worsen. Today I have had 9 movements mostly M. Lots of it. Told the GI Doctor, he was not phased. Told me to drink liquids and eat lots of white rice.
I know this forum is not to diagnose but I am staring at a Dificid or a Vanco. Which one do I take? It is time for my dose so I have to decide something.
I am wondering if I can go back to Vanco but not start with 2000 mg and stay at 1000 mg and extend the duration of treatment. This will be my third attempt with Vanco. I asked the doctor and he told me to decide. Nice!
I asked the Pharmacist and she said 2000 mg is the highest approved dose by FDA but you cannot exceed this. She said it is not common to treat with this high amount but not impossible.
The Doctor is discouraged against FMT and said he has done one only and he said the FDA is re-evaluating the usage.
On a positive note, I also received a call today from a nurse from a GI Doctor who specializes in FMT (got the name from this forum). I told her about the 2000mg of Vanco and her reaction was "WHAT?!" Once my medical records are provided they will determine if I am a candidate. So hope. But in the meantime I don't know whether to go back to Vanco or stay with the Dificid in the hope it may be the cure.

I'm at a total loss! Apologies for the long post. Advice on past experiences welcomed.

[roy]

I would use dificid over vanco without question.

[Lisa33]

Oh Roberta - You have really been going through a lot! I agree with Roy, and given that the vanco has not worked, I would go with the Dificid as well. Dificid also doesn't destroy your good gut bacteria. If I were in your shoes, that's what I would choose. I would also ask about doing a taper of the Dificid as that has worked for several posters after vanco treatments have failed. I'm so sorry you have to deal with c-diff on top of chemo. Your strength is definitely being tested, but you will get through it all. I have never read of any poster taking 2000 mg of Vanco! Wow! Not sure if anybody else has heard of that.

I am praying that things start to turn around for you soon, and you start to feel better.
Lisa

[NanciT]

Roberta

I am so sorry for what you are going through!! You GI sounds just like the one I had previously! He would also make comments to me about" knowing all of this". It is so painful as a patient when you are trying to get well, I am so very sorry that happened to you. My thought is....it will catch them...one day. You cannot treat patients like that and not have it catch up to you...I have seen that in my career as a Healthcare provider.

Onto Dificid. I found it a much more difficult drug to take, I was on it for 10 days but then did have to do a long taper. At the time, I could not get in with the GI who did FMT's for 4 months so I had no other option. It did Cure me of CDIFF! DIficid does work well, it can be harsh to take but I would continue on the 10 day treatment if it were me. There are many on the board who have taken Dificid and done well. I have not heard of that dose of Vanco.
I do hope you get in with the new GI soon
Take care
NanciT

[Roberta]

Hi Nanci, thank you for sharing your thoughts. Would you mind sharing what type of side effects you had on Dificid? Did you take only the 2 x200 mg per day? I don't have major side effects other than a bit of plugged ears and a tiny bit fuzzy headed but honestly I'm so sick with c diff it could be c diff and not the meds.

Also when I took Vanco I felt uncomfortable bladder pressure and burning. When I stopped Vanco it went away.

I asked the GI Doctor (I use the word loosely) about VSL3. I read about it on this forum. He didn't know much about it but did call in a script. The pharmacy said it was not covered. Cost is close to $300 for 4 rounds. Curious if there is a cheaper way to obtain it.

Thanks again,
Roberta

[beth22]

You don't need the RX VSL#3. They sell it over the counter. I get it at the pharmacy at the market where I shop. I get the capsules, about $70 for a bottle of 60. They have to be refrigerated.

Some people have found it difficult to take Dificid, but kept it up and were helped. Maybe if you take a probiotic along with it, it would help. When I first took vanco, I got D and looser stools, but when I started a probiotic, it helped.

[ResearchGrandma]

I have purchased VSL from Costco pharmacy in the past (not recently). At that time I had checked prices and Costco had the best price. I think that I don't tolerate VSL that well. I take Florastor and also Primadophilus reuteri. But many people do very well with VSL-3.

[NanciT]

Hi Roberta

I also purchase VSL#3 at Costco, they keep it behind the counter but no RX is needed.

The first 10 days of Dificid I did not feel too bad, but I then went on a taper dose and felt terrible with Abdominal cramps, left side pain, nausea, and even ended up in the ER one day. The ER doc said" Its the Dificid" but I continued and it did get rid of CIDFF for me.

I never had problems with Vanco until I went on it for 3 months, towards the end, I had bladder pain and thought I had an infection all the time. I also ended up in the ER but it was from severe low potassium, and this happened several times. No one was looking at the Vanco at the time. Now, if you look the drug up, all of this is listed. Number one listing is Bladder pain. Its states in Rare cases it causes severe low potassium. Which can be a very serious side effect. I reported by case because I had so many issues.

[Roberta]

Hi Nancy,
Great info! How long did it take for the Dificid to start to clear your symptoms? I am having both a formed stool in the am, then urgency and several M movements a day. The pain and urgency before and after is the worst. Today I feel a little better but nowhere near ideal. I will check Costco for the VSL3. I priced it at Walgreens today and it was $43 for the pills. I found an infectious disease doctor to see me and specializes in c diff. March 4th appt. Hope the Dificid kicks in and maintains me til then.
The bladder pain and burning went away when I started to taper off Vanco and completely gone after I went off of it. I kept getting tested for a UTI as I was convinced I had one. The only result was crystals in my Urine. Had a CT scan for kidney stones and all clear. So I'm certain it was the Vanco. I read the side effects also. Aside from that I tolerated it well and it cleared my symptoms but could not fully clear the c diff.
How long were you on Dificid?
Thanks Roberta