Bactrim and the runs

[natnnnat]

Gregory had a bad spell of runs and vomiting a few weeks back.  He went to the GP who thought it was probably gastroenteritis, but none of the tests showed anything and the vomiting stopped after awhile.  But the runs continued.  He has got down to 75kg, and Gregory is a tall character, so 75kg is just too thin.  We did a deal on visits to the GP:  I went and saw the GP again about my whooping cough and in exchange Gregory would see the doctor about his ongoing runs.  For we were both saying that it wasn't worth going to the doctor about.  (yes, in other news I have whooping cough and I hate it, I'm coughing my eyeballs out here but I've been to the doctor, had the medication, done the quarantine, and now I just have to do the months of coughing till it runs its course).  So I went to the doctor so that he could confirm that he coudn't do anything to help with the whooping cough and it was all normal, and in exchange Gregory agreed to go to the doc about his ongoing runs. 

Doc decided that it might be his ongoing prescription of bactrim, which Gregory has to take every day now, forever, because of the pneumonia last year.  I think that "they" put all the transplant patients here in Australia on Bactrim permanently, because when Gregory got pneumonia it was part of an outbreak (relatively speaking) among renal people over here.  Is anyone else out there on it?  I think RichardMel is..  Anyway.

The GP is going to call the renal doctors who put him on Bactrim and see if he can negotiate a smaller dose.  And I say, THANK GOD FOR THAT, I've heard from another friend of mine who has been HIV positive for about 20 years, that bactrim is really hard on the digestive system and can have bad side effects.

Anyway I'll let you know what develops with this one.

[billybags]

nat I hope you get sorted quick.

[rsudock]

Nat I was on and am still on Bactrim post transplant (10years) and now on dialysis. Hope this gets better!

xo,
R

[Jean]

nat, sorry to hear of the constant diarrhea and of course, whooping cough. When ever I get a UTI, the neph puts me on antibiotics. Then, of course, the runs. A friend advised me to eat one container of yogurt a day and that works for me. Worth a try I think, if all else fails.

[RightSide]

Yep, I've been on Bactrim since I got my kidney last January.

But it's not the only med I take that can cause diarrhea.  Prograf and CellCept, both of which I take, can cause diarrhea too.  Which other meds is he taking besides Bactrim?

To deal with the runs, I found that a combination of acidophilus supplements and a LOT of fiber in my diet worked best.  It's counter-intuitive, but the more fiber your gut has to deal with, the calmer it gets.

And of course, I try to minimize my consumption of those artificial sweeteners like sorbitol which are known laxatives.  (If I chew a lot of sticks of sugarless chewing gum throughout the day, I'll be sure to have the runs the next day--even without these meds.)

[natnnnat]

He says that's interesting, and is thinking about having yogurt for morning tea.  And I might try to get him interested in popcorn in the afternoon.  Popcorn popped in a brown paper bag in the microwave is high fibre and has no salt or butter.  I can't talk to him about diet coke, I've made enough jokes about that in the past.  He's sucking on one now.  I wonder if that's the thing.

Other medications, well you know, transplant patient:  cellcept, prednisalone (was 15mg a day, cut back to 12.5 last week)... sodibic.  And he has one last shot of aranesp which I need to give him, better get on to that before we both forget.

He saw his renal doctor this week, which was when the preddies were reduced.  In June we hope he will be back to 10mg.  He was on 10mg a day for years, but it was raised when he had pneumonia last November.  He was on 100mg a day for awhile, that was nuts.  Doctor said, "the bactrim doesn't have any side effects"  Gregory said, well what about the diahorrea, and the doctor said, "That won't be it."      (what I would really like is a blank, straight face.  A neutral faced smiley)  :-|

Doctor said, there's more blood tests, he thinks its a "bug", Gregory can't quite remember what it was, DMV, CMV... that he wants to check for.  It requires another stool sample.  So we'll know... next month.  Gregory is happy with that.  He says its eased off quite a bit, used to be 5 or 6 times a day but in the last few days its down to only a couple of days.  He says he feels normal again.  Which says a lot about what he thinks normal is, really.

So I googled CMV and found something so horrible I can't believe its the right one, why would the doctor leave it a month if that's what thinks it is? And another thing, its just not likely that one person will keep having all these bizarre and unusual forms of illness, right? Or should I panic, and go over there, turn the telly off and start shaking Gregory vigorously by the shoulders, while screaming incoherently at him about being proactive?

Hmm...  So I read out just a tiny bit of the description of CMV to Gregory to convince him to get the stool sample done soon, and he's grumpy now.  He says I'm worse than any doctor and the way he gets by is to not worry about all this ** that's gonna kill him and just live his life.  But he has agreed to do the stool sample on Monday, so that we can rule out this business of CMV.   

I have to admit when it comes to my own health I'm not interested in checking things out, I just ignore stuff too.  But when its Gregory, I care a lot.  I've been really.... emotional about him lately, because of how his mother died, which brings stuff to the surface doesn't it.  And he had the thyroid stuff, and now this.  He's been sick for so long now.  I realised in a "real" way in stead of a "theoretical" sort of way that one day, most likely, he will die before I do.  It's dumb, I know, very kind of ... morbid.  But its hard sometimes to giggle at his stupid jokes and then think, shit, I don't want you to die.  How could I possibly go on then?  

He's watching telly.  And he spoke up and said, "I know you are just trying to help."  That's nice.  Hopefully he'll get that poo sample done, and we can rule out this new bug that destroys your organs and your intestines and gives you peritonitis, or whatever the hell it was I read.... and this will just be a story about yogurt and fibre and lowered doses of prednisalone.

[Jie]

...  Doctor said, "the bactrim doesn't have any side effects"  Gregory said, well what about the diahorrea, and the doctor said, "That won't be it."      (what I would really like is a blank, straight face.  A neutral faced smiley)  :-|

My local neph said Bactrim hurts kidney function. He tries to stop Bactrim earlier to increase my kidney function. There are a long list of side effects from Bactrim. It seems that no any western medicines have no side effects.   

[natnnnat]

Gregory had his prednisalone reduced from 15mg to 12.5mg.  He's sleeping, he's chatting, he's happy, he's not getting the shi*z, he's telling jokes, he's motivated at work, he's the gregory of old. 
So I'm happy about that.
Can't wait to see him back to 10mg.  That's the goal for his next appointment, June 20.
And tonight he said to me:  (ahem) he's done a solid poo.  That's the first time in ... months.

[bette1]

They don't have me on Bactrim here in the US.   Sounds like an awful illness.  Hope he feels better soon.

[texasstyle]

I'm not very informed on all these meds and it could very well be the problem with gregory, but I am just wondering if the Dr. is also looking for other things it might be like IBS( Irritable Bowel Syndrome).   I know of 2 people on dialysis and they have both been diagnosed with this. They had continual diarreha. They are now taking medication for it. I have to wonder.. if that is something that comes along in time when on dialysis, IBS. I hope he feels better soon.

[greg10]

I'm not very informed on all these meds and it could very well be the problem with gregory, but I am just wondering if the Dr. is also looking for other things it might be like IBS( Irritable Bowel Syndrome).   I know of 2 people on dialysis and they have both been diagnosed with this. They had continual diarreha. They are now taking medication for it. I have to wonder.. if that is something that comes along in time when on dialysis, IBS. I hope he feels better soon.

Hi TS.  I think the patient here, Gregory, has a transplant and his symptoms are probably not associated with IBS as you described.  In any case it seems like reducing Gregory's Prednisone from 15 mg to 12.5mg helped him overcome the diarrhea.  I think we can start a new thread on IBS here:  http://ihatedialysis.com/forum/index.php?topic=23232.msg378103#msg378103
as the other IBS thread is over 5 years old and has no real answers.

[texasstyle]

thanks greg10. "Is" IBS assciated with renal failure though that you are aware of?

[natnnnat]

Thanks Bette1.
TStyle, its a good call, and Gregory's neph is checking for another thing, called "CMV" which sounds like a really nasty viral thing.  Gregory wasn't in a hurry to do the stool samples, (as they are logistical) but I googled CMV and got on the nag.

Hopefully he'll get that poo sample done, and we can rule out this new bug that destroys your organs and your intestines and gives you peritonitis, or whatever the hell it was I read.... and this will just be a story about yogurt and fibre and lowered doses of prednisalone.

Gregory got his samples into the labs last thursday and he hasn't had a panicked call from the neph yet.  He wants to leave the issue till his next appointment on the 20th.  He figures if there's a problem, they'll call.  He's back with the runs again unfortunately.  When you mention IBS, it did get me thinking... I had the runs for about two years before and after my mum died.  I think it was because I was miserable and going through a lot of worries.  When I met Gregory, it cleared up.  Sweet romance, ay?  Fixed my mad poo disease.  Anyway I do know Gregory has really started his grieving for his own mother now, so in the back of my mind, I hope its that.

Greg10, I'm strangely proud you've started a new thread coming from this one and based on TS's thought.  You do a lot of interesting thinking and I've found it helpful at times.

[natnnnat]

Just a quick update on the situation with Gregory.  You may recall he had ongoing runs (for weeks) and we thought it might have been the bactrim?  The doc said, "it wont be Bactrim, as that has no side effects".  Which was odd. But he then said he thought it could be CMV virus, and sent Gregory for stool sample tests.  I googled CMV, it sounds terrible!  So terrible I decided it was probably not going to be that.  A month later, they come back positive.  The neph Gregory saw said, "its quite common with renal people" and wasn't worried.  He said, "are you still getting diarrea?" Gregory, said "not for a fortnight" (harumph, I'd have said a week but anyway) and the neph thinks it must therefore "not be active".  I am grumpy because I wasn't there and don't have Gregory's calm acceptance of these things, I want like, detail and stuff.  I said to Gregory, did the doctor tell you anything about what CMV virus is?  He seemed not to have said anything, but perhaps Gregory is just remembering the parts that interest him.  Meanwhile I have googled CMV virus again to double check, and phrases like the following still come to my screen:

...CMV can infect virtually any organ of the human body. The most common organs include the blood, brain, colon, eye, heart, kidney, liver, lung and stomach. 
...CMV infection in an immunocompromised person can be life threatening.
...The drugs that suppress transplant rejection also reduce the ability of the immune system to fight viruses, so a CMV infection can be much more serious. For example, infection of the brain, called CMV encephalitis, may lead to convulsions and coma.
...Once a person has contracted CMV, they will carry it for life. This is because the virus lies dormant inside the body and may or may not reactivate itself at any time.

So, if its so common,... has anyone out there got it?  Got any tips?  (apart from "make sure I go along with Gregory to his next appointment next week")
gah!

Oh but wait, there was good news:  his creatnine is back down to 265, it was 295 last time, and the normal range for him is around that region.  I am happy with 265.

Nat - trying to hide her current, permanant look of outrage.

[Ang]

natnnat

my transplant was sept last year , south of the border from where you are situated.

 i was given bactrim (half tablet ) 3 times  a week for 6 months and then it was withdrawn

RM had the bactrim withdrawn after 6 months also.

no runs or anything thus far
sounds like a bug to me

[paris]

I,too, was given Bactrim for six months post transplant.   No problem with it.   On the other hand, my magnesium is very low, so they put me on supplements----and immediately was like Nat's husband.  They lowered the dose (800mg 3xday to 500mg 3xday).   Didn't make much difference. I was miserable plus worried about the amount of fluid I was losing all day.

I guess my point is it is hard to figure out what the cause is sometimes.  We take too many pills!  There are several members that have had CMV --- Chris comes to mind.  I hope they can help you with answers.    I do know that my donor and I are both CMV negative. 

Hope things smooth out.

[natnnnat]

I am really glad that you are tested for CMV and negative, Paris.  It seems from my reading about the topic that it is very common in all people, and only a problem for the immunosuppressed, ... another of "those" ones. 

I'm going to make a new thread, as this turns out not to be about Bactrim anymore.  Well, I was going to make a new thread, but first, because of what you say about others having it, I searched IHD for CMV and well what about that!  There's lots of discussion here already.  (Why didn't I think of that before?)  Thanks for the tip Paris.  So I'm moving my discussion of Gregory and his poo to this thread here:  http://ihatedialysis.com/forum/index.php?topic=22417.msg367097#msg367097

Hey Ang!  Greetings across the border.  I hear Melbourne is much groovier than Sydney.   Gregory said the team at his hospital considered stopping the Bactrim, but they haven't yet.  I think I might have missed your transplant, so here's a big congratulatory hug to make up for it:    . Wishing you a long happy time with your new kidney.  Very pleased for you. 

[Jie]

BKV, CMV, and EBV are three Vs that affect some transplant patients mostly starting during the first year. Many transplant patients take an expensive drug to prevent CMV during the first 6 months or one year. CMV may cause more problems for patients who had not had it before. Anyway, if I have to choose between BKV and CMV, and I would pick CMV.   

[natnnnat]

Its about time I reported back that Gregory's CMV has all settled down now, and he is generally chipper.
So chipper in fact that his creatnine is down to 220!!!!  that's the lowest its been in years.  He normally sits around 270.  We are both really excited about that excellent result and Gregory has a new goal of creatnine under 200. 

(translation:  if 1 mg/dL of creatinine is 88.4 μmol/L.
then 220 = 2.48 in US terms)

[Wenchie58]

I received my transplant in 2008 and in 2009 I got to enjoy both BKV and CMV.  I'm just one of those girls who has to have everything I guess.
  I was on Bactrim for 6 months post transplant and also onValcyte for six months due to the fact that my donor was CMV positive and I was CMV negative.  A little over a year post transplant the CMV grabbed me by the guts and held on for a month.  My neph says that Valcyte is the flat out best med for CMV...therefore they only give you what is a must, so the virus doesn't build immunities to it.  BKV really made me more ill...fever and whatnot.
Knock on wood...the last 18 months have gone smooth and even.  Good luck!

[edersham]

As usual my experience in this area is identical to Paris. I have had periodic bouts of the runs ever since I was started on 800 mg of magnesium a few months after transplant Once I even ran out of mag for about 10 days and the runs stopped totally. Thats why its called Phillips Milk of Magnesia I guess.

Ed




























thats why