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UTI's

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  • jaycee49
    jaycee49 Member Posts: 1,264
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    I've taken 6 days of 250 mg Cipro 2 x day. I almost quit yesterday because the se were making me feel so bad. DH convinced me to try to do a few more days so I did. I feel better today. Who knows why. Such a crap shoot. I want to feel ok when my sister is here. She had stage 0 many years ago and did lumpectomy and radiation. She refused hormonals. It never came back. She still has mammos at 70. Freaks out every time.

    I will speak to my uro and gyn about d mannose and hiprex when I see them after my sister leaves. Does anyone have the reported se of diarrhea from d mannose? That worries me a lot about the d mannose because I get diarrhea from everything.

    Thanks for the offer, katcar. I'll buy it online if I decide to try it.

  • corky60
    corky60 Member Posts: 453
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    I think that a prescription is required for methenamine hippurate.  I use 2 tsp of d-mannose per day with no diarrhea.

    I've tried Vagifem to treat the urovaginal atrophy and it does nothing.  It has only 10/1,000,000 of a gram of Estradiol per pill. My MO approved it.   But my body can't detect it.  I have no ovaries.  Even in menopause the ovaries produce a bit of estrogen.  The only problem for me is that estrogen causes migraines.  So I recently returned to Vagifem to see if things had changed.  Bam, within a week it felt like stinging coarse sandpaper down there.  QOL is important.  We each have to make our own choice.

  • jaycee49
    jaycee49 Member Posts: 1,264
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    Thanks, corky. I guess I will try d mannose after my company leaves in a week.

    I quit using Vagifem for three reasons. It got expensive. It stopped working. It caused vaginal yeast. I never had headaches from Vagifem. With oral estrogen, I did. I asked my former MO about it once. He poo-pooed it like all other side effects of anything. So glad to be rid of him.

  • wendiwithani
    wendiwithani Member Posts: 27
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    Hello all...haven't read through this entire thread, but I wanted to add my experience. I suffered from frequent UTIs as long as I can remember. About seven years ago, I began taking 3000 mg of vitamin C daily. I have had one UTI (yep, you read that right...one) since that time and it was after round two of chemo. Just thought maybe my experience would help someone out there. :)

  • jaycee49
    jaycee49 Member Posts: 1,264
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    Made it through my company feeling ok. That was great. A week later sx returned. Took sample to hospital lab (long story) and got results. Positive, of course. (>100,000 CFU, whatever that is [colony forming units like that explains it]) It is a different bacteria than last time three weeks ago. No call from uro office yet. I like to get sensitivity data before taking an antibiotic anyway. That was not on the portal yet. Good (sort of) news is I stopped taking Letrozole on Sunday and the symptoms have become much less. I can wait for uro NP to let me know what she wants to do. It takes them forever to do anything. The sample got to the hospital lab on Monday. I took it myself. No usable results on Thurs. I may call them in the AM. I see MO on Wed. See what she thinks. I think I need to take a month off Ibrance to get my white count up and stay off Letrozole, too. What a huge difference that makes.

    I copied the above from a post I made to the Ibrance thread yesterday. I got a call from uro office this morning. NP wants to try Augmentin. I don't think I've ever taken it before but it has Amoxicillin plus something else. I do ok on Amox so I'll give it a try.

    What a struggle. I'm tired of it.

  • wintersocks
    wintersocks Member Posts: 434
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    HI everyone

    Here are the latest guidelines in the UK for UTIs. I am on Nitrofurantoin and they are keeping the infections away.

    https://www.thelancet.com/journals/lancet/article/...




  • jaycee49
    jaycee49 Member Posts: 1,264
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    Wintersocks, I can't use that antibiotic for prevention because it makes me really sick. I may ask about using a low dose of Amoxicillin since it gives me least problems. I know low doses of it exist because they use it in children. There is a chewable and a suspension.

    The link you posted above doesn't work for me. I'm not sure if this is the article you meant but it includes a link to the guidelines. It is kind of a summary. It looks like maybe you just didn't get the whole URL. It's a long one.

    https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(18)31077-8/fulltext

    Even though I click the box for "open link in a new tab," which it does, it also opens it in the current tab on top of what you are looking at in BCO. I tried to point out some technical errors like this to the Mods but they are clueless.

  • corky60
    corky60 Member Posts: 453
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    Thanks jaycee for posting a working link.

  • wintersocks
    wintersocks Member Posts: 434
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    Jaycee

    Thanks for the tech help. I always struggle with that.

  • jaycee49
    jaycee49 Member Posts: 1,264
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    I just finished my third course of antibiotics in three months, mid-April, mid-May, mid-June. All were for positive cultures of different bacteria. I just found yet another preventative product, expensive as usual. Uqora. Anyone ever heard of it or tried it? It is advertised like Ellura. Miracle cure. Drink the powder mixed with 8-10 ounces of water after sex, exercise, when you feel one coming on, or daily and you will never have a UTI again. I went for it because it was cheaper than Ellura ($45) at $30 and I had a discount offer for 10% off ($27). Here we go again. This may bother my stomach like Ellura because it has vitamin C and lemon. I have some 125 mg Amoxicillin (children's chewable) that I haven't tried yet. This Uqora is mostly D Mannose, I think. 2000 mg per dose. That's a lot and I worry about GI issues with it, too. I've been posting in the steam room about this because it is making me so angry. My gyn's nurse just called to say the vaginal cultures we did last week were clean and she tested for everything so it's not coming from there. I'll report back on the Uqora after I get it and take some.

  • corky60
    corky60 Member Posts: 453
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    Jaycee,  I am so sorry that your are going through this again.  

    The Methenamine Hippurate that I've been taking for four months has kept me free and clear.  Although sometimes I think that I feel an infection coming on but it never does.  One of my clinics posted it as Methamphetamine.  They got lazy and used autofill in the clinic.  I had them correct that straightaway.  

    I hope that you get good results with the new product.

  • jaycee49
    jaycee49 Member Posts: 1,264
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    Thanks, corky. Does the meth hpp (I've seen it abbreviated that way and it is sooo long to type) have any of the usual side effects of antibiotics? And can you take it forever, resistance not a problem? And which of your doctors prescribes it? I'm having trouble communicating with my uro right now. Long phone waits and the portal doesn't work for me because I use a "non-standard" computer (Chromebook). My gyn and PCP are good with their portals. I was thinking of asking one of them. Sorry for all the questions. Glad it is working for you. I guess I need to be careful with the "meth" abbreviation per your clinic's autofill issue.

  • 2FUN
    2FUN Member Posts: 789
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    since methHPP is not an antibiotic you will not develop resistance. It's form of action is to bind with acid in the urinary tract and form formaldehyde. Thus making your urinary tract sterile, nothing can grow there. I know that no bacteria can grow, but neither can the natural good bacteria either. So it is technically and antibiotic, but not like penicillin and others.

  • prairietwin2
    prairietwin2 Member Posts: 11
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    I also have the sore skin and it seems very fragile. Have had recurring yeast infections. Out of answers



  • jaycee49
    jaycee49 Member Posts: 1,264
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    Prairie, for the sore skin, have you tired vaginal moisturizers? For the yeast, at one point a few years ago, I had a yeast infection for eight months. I finally got rid of it by cutting out all sugar and carbs from my diet. It was very hard and I didn't comply perfectly, but after a few months of that, the yeast let up. I also used Monistat for symptom relief from time to time. There is also a different OTC product that kills a different yeast strain. Clortimazole (just looked it up). I can't take Diflucan because it really makes my stomach hurt. I hope you can find something that works.

  • corky60
    corky60 Member Posts: 453
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    Jaycee, the meth hpp doesn't have the same SEs as antibiotics.  I always get a yeast infection with the antibiotics but not with this.  I don't know if it can be used forever but my urologist wrote the prescription with refills for a year.  I am so glad not to be running every three weeks to the dr with a UTI.

  • jaycee49
    jaycee49 Member Posts: 1,264
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    Thanks, corky. That's good to know about the yeast. I was wondering if you had any GI side effects from it which all the web sites say is reported. That's what I get from antibiotics. If I takes tons of probiotics, I survive ok. Just curious.

  • katcar0001
    katcar0001 Member Posts: 321
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    Jaycee -- I hope you try the Hiprex and that it gives you some relief. I don't know how you have managed so long in such discomfort. You deserve a break.

    My onc took my off Estring a month ago to see if my issues came back. So far, none of them have come back. I feel normal, and I am not even experiencing dryness. Makes me wonder how long it takes to clear its effects.



  • ShetlandPony
    ShetlandPony Member Posts: 3,063
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    I'd like to share three things which may help keep urinary tract infections as well as vaginal infections away. I recently learned that menopause (so by extension anti-estrogen bc treatment to my thinking) raises the pH in this area of our bodies, which promotes bad bacteria and discourages good bacteria. (See the paper linked below.) This can contribute to urinary tract and vaginal infections. My gynecologist explained that semen raises pH as well, which is why sex seems to exacerbate infections. She said to use RepHresh after sex to lower the vaginal pH. Also, I found some "feminine intimate cleansing gel" which has a low pH, to replace soap for the daily shower. And, I found some kefir and some supplement pills that contain the important good bacteria discussed in the article: Lactobacillus rhamnosus and Lactobacillus reuteri.

    Stephaniebc posted this link to a paper on the Mojo thread:

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC26623...

  • corky60
    corky60 Member Posts: 453
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    Jaycee, I get no GI problems from the meth hpp.  I have my share of other health issues, as do most of us, but now constant UTIs is not one of them.

  • lulubee
    lulubee Member Posts: 903
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    I have a UTI from Klebsiella pneumoniae again, and I'm glad to find this thread. I believe I have had it since at least May but it has taken this long to figure it out. I have been on weekly Taxol for 19 months and it seems to flare after an infusion for some reason. I would love to know if this is my imagination.

    This is my second KP UTI-- had one a little over a year ago after I was hospitalized and on oxygen, which is probably where I got it in the first place. Now I'm wondering if it could have been hiding out in my system for over a year, since that first infection??

    It's been really confusing so far. Three weeks ago, a UA showed WBC in my urine but no bacteria (not sure they cultured it long enough to rule out KP though). I had Taxol on Thursday and by Saturday morning I was burning like crazy again and I had lots of visible RBC in my urine and was wiping pink. So on Monday morning I went in for another UA... urine looked clean in the cup, to my surprise... and showed NO blood cells on the report. What the heck?? Weirdest thing how blood in the urine could clear up like that on its own. But then it grew KP.

    MO started Cipro today just to get something going while we wait for the sensitivity test to come back. I am not optimistic about Cipro because I took a round in May and obviously it did not kick this monster. MO is also waiting for results on whether it is low colony or high. Meanwhile I am miserable and in a good bit of pain. Taking AZO maximum strength which helps; she told me not to take NSAIDS because of the bleeding last weekend.

    Anyone have any tips for this? KP is scary stuff.

  • 2FUN
    2FUN Member Posts: 789
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    I've been having utis for the last 8 yrs or so. I wouldn't worry specifically about KP , as it is no more "scarry" than e.coli or something else. I would see if your MD can recommend another ABX other than cipro. The class of drugs cipro blogs to can cause tendon rupture even years later. I still sufree the effect from Bilateral Achilles tendon and rotator cuff rupture. I had a hard time walking for almost 4 years.

    I see a urologist every 3 months. She is very knowledgeable and says that when women get dx with BC there is a higher incidence of UTI , and they don't know why. Every year or two I get a cystoscopy to rule out bladder cancer, as bladder cancer (and uterine, colon and thyroid) all seem to travel together) they believe there is a genetic link, but they have no testing for it. All of my genetic testing was normal and I've had 3 cancers in one year.

    Drink a ton of water. I drink 5-10 liters a day. An anti inflammatory diet, probiotics, cranberry tablets, d mannose are all helpful. You may have your MD look into prescribing methamine HPP.


    good luck, and keep us posted!

  • OCDAmy
    OCDAmy Member Posts: 289
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    Glad to find this thread. I started on AI in January and have had two UTIs. While I was on chemo I got a UTI that got me a two day hospital stay. Before cancer I had never had a UTI. I see my MO tomorrow and planned to ask him about it. I see lots of suggestions on this thread. Is there one thing that you have all found works best without estrogen

  • Lula73
    Lula73 Member Posts: 705
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    in addition to the AZO/Cystex over the counter meds that treat the symptoms of UTI, Uricalm with Mannose-D helps clear the infection and supports urinary tract health. (Make sure it's the one in the picture-they make a different one for UTI symptom treatment but it doesn't have the mannose-D in it.) The last bad UTI I had I took the Uricalm for 4 weeks total and cross my fingers haven't had one since (that was back in Dec. Don't cringe when you see it's a chewable tablet-it actually tastes decent-like the candy called Spree.

    image


  • jaycee49
    jaycee49 Member Posts: 1,264
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    Amy, you asked, " Is there one thing that you have all found works best without estrogen?" Well, I've been reading this thread for a while and had UTI's for ... ever ... and I'm pretty sure the answer is no. There are many different things that work for different people but no one thing universally works. Vaginal moisturizers work best for me but Lula, that pic above made me realize how well Uricalm is working for me right now. I noticed after just a few days that I was getting up to pee at night way less. And no UTI ... yet. I do think my UTI's come in bunches due to MS exacerbations. They pass with time and I will have a good period. No rhyme or reason. I've pretty much given up trying to figure it out. Next one I get, I will start meth hpp after and try that. D Mannose bothers my stomach quite a bit. I have one product with 2000 mg (Uqora), one with 1000 mg (a GNC item), and the NOW D Mannose with 500 mg. Each causes GI pain. The Uricalm cranberry has only 50 mg. Maybe not enough to do anything but no GI pain. Maybe it is the cranberry though you read how cranberry is useless. I go off Letrozole for a month when things get really bad (3-4 consecutive UTI's) and that works but...my newest idea is to go off Letrozole for the week I am off Ibrance. Tried it once so far. Not a large enough sample size to show anything.

  • 2FUN
    2FUN Member Posts: 789
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    I wouldn't wait to start the method hpp, as it does not treat an infection, but prevents infection by sterilizing the urinary tract

  • jaycee49
    jaycee49 Member Posts: 1,264
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    If something has GI side effects, I will have them. I know it doesn't cure an infection. I got my uro to rx some. I have it here. After my next UTI, I will try it in desperation and see if I have I side effects from it. I will. I will then have to decide if it is worth it. Maybe, maybe not. Look at any website about meth hpp and you will see these side effects, among others. These came from rxlist.

    Common side effects of Hiprex include:

    • nausea,
    • vomiting,
    • upset stomach,
    • diarrhea,
    • abdominal cramps,
  • 2FUN
    2FUN Member Posts: 789
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    I got hives on it, so I get where u r coming from

  • wintersocks
    wintersocks Member Posts: 434
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    Hi everyone

    Just checking in as it's been a while to report that I am at my wits end with yet another UTI. despite being on prophylactic dose to keep it away. it started about 2 days before I was due to go to India. I got a rx for something called PIV (it's a kind of penicillin specifically for UTI). The GP said he would give me 7 days as opposed to the usual 3. I decided to take a chance and go to India (with insurance) and for the first few days felt discomfort and flashing pain across the kidney are at both sides. This was in rural India!

    Got home and things did still not feel right and so back to the GP where the dipping test shows there is still infection and it is not sensitive to Amoxicillin but is to this PIV. I am now on another weeks course and am returning to see the GP next Wednesday to see if it's cleared and if it has not what to do next.

    Honestly. I feel so down with this again and worry that it will eventually become resistant to all abx. I don't know if I should come off Letrozole because I am sure that's what must be causing it; but Tamoxifen will probably be the same in this side effect.

  • corky60
    corky60 Member Posts: 453
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    I feel so badly for you, Wintersocks.  I understand the pain and frustration.

    I found that even with a vaginal estrogen supplement I was still getting UTIs.  And this is after I quit both Aromasin and Tamoxifen.  The only thing that has worked for me is Methenamine Hippurate, a 1 gram tablet twice per day.  It has prevented UTIs from recurring.  I was getting UTIs every three weeks.  Now I have been free of them since the end of February.  I hope that this helps you too.

    Also, If I were you (and I'm not) I would not quit the letrezole due to the stage and grade of you cancer.  But that is an individual decision.