Weight loss and other problems during third relapse and vancomycine treatment

[m16]

Hello,

I am writing on behalf of my mother who is 71. Suffers c. diff from the end of December 2019 (though we confirmed this later). In December she was prescribed Metronidazole, due to abdomen pain and diarhorrea, though without formal diagnosis. Took it badly due to its toxicity, despite the fact that the dosage was lower than recommended for c.diff. Later the diarhorrea returned this time stronger. Advised by our GP we ordered a stool test which was positive for both toxins and antigen. Mother went to hospital for the vancomycine course which lasted ca 10 days. A week after completion the was a relapse, which sent her one more time to hospital this time with pulsating vancomycine treatment which continued after discharge, in home. Another week after completion there was a third relapse and mother was once again prescribed oral vancomycin in "pulse mode". Now it takes it 125mg in 7,5 ml solution once a day. (after taking it four times a day through first two weeks and two times a day in subsequent week).

My questions concerns her current state and future course of treatment. On the surface she appears active. Between previous relapses her blood count was ok, tumor markers appeared to be of extremely low values and CRP which was first marer of infection was slashed to 1.5. So the treatment worked albeit temporarily. Now due to covid she can not be properly diagnosed but she is active, no fever or tachycardia which was present before.

But the issue is her weight. Mother is very slim person. Before the contraction she weighed 43 kilograms (93 pounds). During first relapse she was weighed by nurse as being of 40 kilos (87 pounds). Nut even then it was "generous" as she was not asked to undress. Now in the morning she gets reading from our home scales as low as 37.8 kilograms( ca 82 pounds). This may be due to error of the device or maybe she lost that weight before but it is still unsettling, because her weight is so low. Additionally she suffers from cramps or pains in abdomen and loss of appetite that hampers any attempts of gaining weight and may even decrease it. And all of this in fourth week od vanco treatment of third relapse.


My questions are:

1 Are my mother's symptoms "within range" of proper response to treatment? Or should I be alarmed?
2. Is the weight loss to be expected at this moment? Or eating problems and cramps?
3.Should my mother try fecal microbiota transplant instead of typical vancomycine therapy? Should it be done earlier?

We try to keep contact with doctors but this is difficult due to COVID . The same reason may delay the FMT. Mother is set to consult doctor via telephone soon, but I'would like to ask you ehether I should do something more. Basically I need to know how serious are her current symptoms and whether they can possibly lead to deterioration, and, if so, how to prevent it.

Thanks in advance for the response.

[beth22]

Hello m16 and welcome to the site. You can find more information for new posters in the first forum.

I am so sorry to hear about your mother. 82 lbs is very thin, even for someone who is petite. It sounds as if you are in the UK? Dificid (fidaxomicin) would probably be the course of treatment that I would speak to your doctor about. It has worked for people who have failed vancomycin. FMT would be a last resort. I had one, but now with the COVID-19 to worry about, I doubt that hospitals and clinics are even doing them. It is an option, but I would ask about the Dificid first.

As far as weight goes, I had trouble gaining for quite some time. I developed food intolerances that made things even more difficult. See what foods your mother tolerates and try to have her ear larger portions. A doctor told me that in order to gain one pound a week, you have to increase calories by 500 a day. Some people tolerate those nutritional drinks like Ensure. I did not. Ask your doctor what he or she would recommend for weight gain. My mother was given some kind of appetite stimulant, but perhaps increasing the caloric intake would be enough to start her going in the upward direction.

[roy]

Posters IP indicates they are in Poland Beth.

[m16]

@beth
Thank you for advice. I have two more questions. What is the best treatment algorithm in cases of multiple relapse?
Because I am reading contradictory acounts. I believe somewhere on this forum there was a suggestion that two failed vancomycine courses should be followed by fecal transplant - fidaxomycin as an alternative. Is the fidaxomycin a choice a primary choice now because of COVID?

Also what is prognosis with multiple relapses. Are you cured eventually? How many courses you need to endure?

[georgina]

I would discuss about Dificid (Dificlir in Europe) with the doctor . Although some people found it harsh and did not feel very well while on it , it has been their magic bullet. Don't know what to say about the FMT ,it can be done as a third line of treatment but during the SARS-Cov outbreak i doubt any doctor would do the FMT with all the restrictions in the hospitals. I think that Dificid is the best option you have right now.

[m16]

All right , thank you all for advice. I have one last question?

Is it possible for clostridium strain to develop immunity against vancomycine, making subsequent courses les and less effective?

Or are those failed courses just a fluke, a bad luck, a series of unfortunate events?

[roy]

Theres a long version of the answer to that question but the short one is that each course of medication has a higher chance of it returning,
The meds still resolve the symptoms but it comes back once they are finished.
After course 3 the chances of it returning are around 60%

My thought are that the initial episode might not have been c.diff and being treated with low dose metro might have actualy CAUSED c.diff.
Just because she now has c.diff does not mean there is nothing else wrong.

[m16]

@roy
Thank you. but just one last thing: what do you mean by " (not being)nothing else wrong" ? Do you think, her symptoms suggest some other underlying condition which is present right now?

Indeed I forgot to mention that In December, before clostridium onset, she went to hospital with arthritis-like symptoms. Treated with xifaxan (rifaximinum) the symptoms ultimately resolved. Abdomen pains appeared however, prompting first metronidazole course which failed her badly. Now however there does not seem to be any evidence of comorbidity...I hope....Blood count was ok before last relapse....Serum electrophoresis was somewhat messy but not suggestive of gammopathy or blood cancer. In autumn she underwent gastroscopy, abdomen usg, chest RTG. She could not complete colonoscopy but very low CA-125, CEA, CA-19 markers seem to make cancer , at least in advanced stage, not likely. That is how i understand it at least.

[roy]

C.diff is most likely the result of all the other treatment, not the cause of the earlier symptoms.
That's a LOT of investigations and the reason they were done might still be adding to her current problems.
Drs look at the current diagnosis and often ignore the previous symptoms that instigated such a large amount of tests.

[m16]

All right , thank you all for your kindness and advice. I will try to make the best of them, especially paying attention to any possible strange symptoms unexplained by c. diff. I will bother you no further, at least until there is some major, important development. Best wishes for all of you.

[roy]

Posts about your mothers situation is why I am still here.
Ask anything you like, you will always get support here.

[beth22]

If your mother does need FMT, I would suggest that a family member that has been tested, be the donor. Now with the COVID-19, I'm not sure I would want a donor I did not know. But, whoever is the donor, would still have to have stool tests to make sure there are no pathogens, c diff, parasites, etc. My daughter was my donor.

[m16]

@beth22

Additional thanks for this last advice. May be very important. I will look into this issue.

@roy

Also thank you for continous support.

[m16]

not sure what to think or do...


Mother was well during last week and was steadily gaining weight (measured everyday in the morning , before breakfast, undressed). She went from 37.8 kilos to about 38. But yesterday suffered another series of cramps and multiple "evacuations" (though stool was "well formed") . Today she seems OK (except for discomfort in abdomen), but her morning reading from scales is 37.7 kilos. Not sure what to think, I know 100 grams less is little I can not stop thinking about direction it is going.

Thought about some coexistent condition, but i can not come up with anything conclusive. Pains and evacuations seem to be periodic, this may be IBS, we both suffer. It is weight loss that is so unsettling. But apart clostridium and those IBS-like symptoms AND apparent weight-loss mother is relatively well. Cancer? But she was tested as much as we could -no indication. All that testing before was done as a routine check to exclude this possibility.

Dunno what to think...Suggestions? Anyone?

[phir91]

Hello,

Gosh that’s really upsetting to hear. I hope it does not continue to go in the other direction. I myself am in the very early recovery days from cdiff (could very easily go either way). I’m a very petite person anyway and have lots a lot of weight from cdiff! I’m 5ft 1.. cdiff got me down to 6st 9lbs.. my mum came to drop off meds and was shocked when she saw me.. I have been gradually putting on weight but it’s hard. What has helped was meal supplement shakes... I don’t know what brands are where you live.. I’m from the UK.. but I started the day with a supplement shake that’s about 400 calories and I really believe it has helped!

I’m sorry if this post hasn’t helped at all... it may have been something you have already tried or maybe there is something underlying (I certainly hope not).. just thought I would share what’s helped for me.

Very scary during this time with COVID-19 around, look after yourself and my thoughts are with your mum.