Wow, I have never read a thorough detailed well-written article on bladder problems such as this one! I recognized myself in many of the above problems, but taking Betmiga mostly solved the problem of frequency, and pressing on my lower abdomen is daily routine for hesitancy. However, UTI after sex remain. I've had UTIs after sex for the past 12 years (since I first started having sex), and I've had only one partner so far - my husband. I've managed to keep them under control eventually, by taking cranberry products with PAC and taking d-mannose, however, this summer I developed some form of urinary retention - when I pee I have to press on my lower stomach, and only then I have the feeling that the bladder is empty. It obviously isn't, because UTI follows within 24h of sex. The only thing that works now is taking a single antibiotic after sex. :( That is not a long-term solution. Have you had any female patients with similar problems, and did they have any luck in resolving their problems? Take care!
I suffered with UTI after sex for years - tried all the usual preventative methods but it kept happening, so in the end I went down the prophylactic route too. This was several years before my MS diagnosis. Although I have some mild hesitancy, retention and stress weakness problems, I have not suffered with recurrent UTIs since having children (I’ve still had the odd couple of infections but not like before - so I no longer need the prophylactic.) We also found that condoms were helpful in preventing UTI. Hope you manage to find a solution!
I've been taking Hiprex for about 18 months and it's changed my QOL as i used to get UTIs every 2 or 3 months and was. building up resistance to antibiotics. You talk about the risk of building up microbial resistance if taking methenamine hippurate. continuously and advise having 'fallow periods'. On past performance I'd very likely get a UTI which would be very unwelcome which would probably see me in A&E. I know people who've been taking Hiprex for 10-15 years with no. resistance problems. How strong is the evidence and thoughts?
We normally recommend cycling between different urinary antiseptics to try and prevent resistance from developing. This not an absolute requirement, but a recommendation.
They are different classes of drugs. So if you don't respond completely to either mirabegron (B3 adrenergic agonist) or an anticholinergic you may find the combination better, I.e. synergistic. Ideally you start with lowest dose first and build up to find the most effective dose.
Very pleased that you still think that the Charcot project has legs. I read recently that Julian Gold was rather sceptical about its future, and that it may have been pushed aside, as time has passed. Regarding bladder issues, mainly to do with constant UTI’s, where the bladder wall has deteriorated. As a PWms I was in that situation along with a number of MS friends who’s lives were being dogged by the same issues. Constant UTI’s endless use of higher level antibiotics such as amoxicillin, Nitrofurantoin and feeling dreadful have had thier lives entirely transformed by a very simple simple non prescription drug called methenamine hippurate, brand name Hiptex. It is an antiseptic and slightly increases bladder PH. This makes the bladder a less welcome host for bacteria. I and everyone I know who takes it have entirely rid themselves of constant UTI’s. I’ve mentioned this to a number of urologists, who took no interest. I have no financial connection to the manufacturer and am no crazy zealot. I know this is not the answer for everyone. But someone should champion this, Myself and numerous friends have has their lives transformed by this drug.
I have taken Hiprex, my aunt sent it to me from Norway, cause it's not available in Bosnia. I took it every time after sex, because sex is the cause of UTIs for me. However, I obviously became resistant to it, cause after 1 year UTIs came back... I no longer use it, I may even have 2 bottles of it at home
The urinary function issues that you describe with detrusor-sphincter-dyssynergia here can be extremely frustrating for people. I notice that you mention tamsulosin as one of the treatments that's used for this condition. But people need to know that human studies have shown that this drug is related to a significant increase in dementia. It doesn't mean they shouldn't take it if its working, but people should be aware of the risks. https://mattcook.substack.com/p/beware-this-treatment-for-prostate
Brilliant article and my goodness this is me, offered Botox yrs ago but then it calmed also I was scared. ATM it irritates 24/7 really need to get back to urologists as has increased full body spasms.
Hence this only ever had 1 UTI ( very lucky) . Need every 1-2 hrs commode in a care home so often have to wait. Have a pad but stiffness in hips will not allow a drip.
I liked your article and everything you talked about. The article explained a lot, and I understand much more than I did previously. It also answered some questions I have posed to doctors before, who seemed incapable of answering me. Like, "What part of the brain or spinal cord controls the legs—the top and the bottom?" Because they were affected at different times: the bottom of the right leg first, then the bottom of the left leg, then the top of the right, then my bladder was affected with urgency, then with incontinence, and then the top of my left leg. I am curious as to what may have happened in my brain and spine because bladder problems were not an early sign, but my condition has been poor and my prognosis guarded. The only thing I can think of is what I was told many times… "MS is an unpredictable disease."
What I really want to know (that I really don’t understand) is if there’s a way to find out if the nerves are just demyelinated and covered with scar tissue, or if actual nerve fibers are destroyed. One way gives me some hope that new remyelination—either with new therapies or spontaneously. It’s just something that would be good to know, and would also help to understand other things better.
Novel Strategies in the Prevention and Treatment of Urinary Tract Infections
Lüthje P, Brauner A. Novel Strategies in the Prevention and Treatment of Urinary Tract Infections. Pathogens. 2016 Jan 27;5(1):13.
DOI: 10.3390/pathogens5010013
Abstract: Urinary tract infections are one of the most common bacterial infections, especially in women and children, frequently treated with antibiotics. The alarming increase in antibiotic resistance is a global threat to future treatment of infections. Therefore, alternative strategies are urgently needed.
The innate immune system plays a fundamental role in protecting the urinary tract from infections. Antimicrobial peptides form an important part of the innate immunity. They are produced by epithelial cells and neutrophils and defend the urinary tract against invading bacteria. Since efficient resistance mechanisms have not evolved among bacterial pathogens, much effort has been put into exploring the role of antimicrobial peptides and possibilities to utilize them in clinical practice.
Here, we describe the impact of antimicrobial peptides in the urinary tract and ways to enhance the production by hormones like vitamin D and estrogen. We also discuss the potential of medicinal herbs to be used in the prophylaxis and the treatment of urinary tract infections.
1 I take prophylactic cephalexin every night as this is the only antibiotic which has stopped recurrent UTI but I do not rotate with other antibiotics e.g. nitrofurantoin as it does not help. I have been asked to start hiprex but when I tried it once before it made my bladder worse which I assume is because it makes the urine more acidic which surely contradicts what you're trying to do with urine i.e. make it more alkaline?
2 I have read you mention before about regular dip tests at home for your urine can you please elaborate thank you
Using the same antibiotic indefinitely is likely to eventually select for a resistant organism. However, if it is working for you now you can cross the antibiotic-resistant bridge when the need arises.
Some of the species of bacteria that cause UTIs have an optimal pH range so changing the pH either up (alkalinization) or down (acidification) may both work. I must point at that this will be trial and error as the data supporting both strategies is not that good.
O'Kane DB, Dave SK, Gore N, et al. Urinary alkalisation for symptomatic uncomplicated urinary tract infection in women. Cochrane Database Syst Rev. 2016;4(4):CD010745. Published 2016 Apr 19. doi:10.1002/14651858.CD010745.pub2
Thank you for this excellent article. I am in the U.S., and received a treatment that seemed to help with my chronic UTIs...until COVID hit, and the office closed. The procedure was Percutaneous Tibial Nerve Stimulation (PTNS). An acupuncture needle, was placed in the tibial nerve (at the ankle). Then the nerve was stimulated electrically for thirty minutes. Prof. Giovannoni is there a reason that you did not mention this in your article? I am asking because your article was so helpful, and gave me several new ideas to discuss with my Urologist. I am desperate. My UTIs have returned with a chronic vengeance. In the U.S., PTNS is covered by Medicare, and I plan to resume this therapy, but would love to hear your thoughts about it.
Yes, PTNS is also used in the UK and can help with urinary frequency and urgency, i.e. symptoms of neurogenic bladder. I am not aware of any data on using PTNS for recurrent UTIs; how would it work?
Thank you so much! My problem is hesitancy. The water trick helps. Sitting awhile and bearing down helps. I try to drink a lot of water each day. When I feel like I might be developing a UTI, I do drink cranberry juice. It does seem to help.
Wow, I have never read a thorough detailed well-written article on bladder problems such as this one! I recognized myself in many of the above problems, but taking Betmiga mostly solved the problem of frequency, and pressing on my lower abdomen is daily routine for hesitancy. However, UTI after sex remain. I've had UTIs after sex for the past 12 years (since I first started having sex), and I've had only one partner so far - my husband. I've managed to keep them under control eventually, by taking cranberry products with PAC and taking d-mannose, however, this summer I developed some form of urinary retention - when I pee I have to press on my lower stomach, and only then I have the feeling that the bladder is empty. It obviously isn't, because UTI follows within 24h of sex. The only thing that works now is taking a single antibiotic after sex. :( That is not a long-term solution. Have you had any female patients with similar problems, and did they have any luck in resolving their problems? Take care!
I suffered with UTI after sex for years - tried all the usual preventative methods but it kept happening, so in the end I went down the prophylactic route too. This was several years before my MS diagnosis. Although I have some mild hesitancy, retention and stress weakness problems, I have not suffered with recurrent UTIs since having children (I’ve still had the odd couple of infections but not like before - so I no longer need the prophylactic.) We also found that condoms were helpful in preventing UTI. Hope you manage to find a solution!
Excellent article on bladder problems - thanks.
I've been taking Hiprex for about 18 months and it's changed my QOL as i used to get UTIs every 2 or 3 months and was. building up resistance to antibiotics. You talk about the risk of building up microbial resistance if taking methenamine hippurate. continuously and advise having 'fallow periods'. On past performance I'd very likely get a UTI which would be very unwelcome which would probably see me in A&E. I know people who've been taking Hiprex for 10-15 years with no. resistance problems. How strong is the evidence and thoughts?
We normally recommend cycling between different urinary antiseptics to try and prevent resistance from developing. This not an absolute requirement, but a recommendation.
Thanks. Apart from Hiprex could you please. give me 2 other antiseptics please.
i have tried to add Vesicare to Betmiga25 mg, and got a severe (7 days) constipation…
Yes, vesicare or solifenacin causes constipation. It is a common anti-cholinergic side effect.
Thank you so much for this article! May I ask why we should add TROSPIUM to MIRABEGON?
and which dosage 25 or 50 mg for Mirabegon
They are different classes of drugs. So if you don't respond completely to either mirabegron (B3 adrenergic agonist) or an anticholinergic you may find the combination better, I.e. synergistic. Ideally you start with lowest dose first and build up to find the most effective dose.
Sorry to bother you again but you haven't answered my request for i2 urinary antiseptics other than Hiprex so I ca n cycle as you recommend.
Yes, I did. I posted my answer on the 6th October:
"We use nitrofurantoin, trimethoprim and cephalexin."
We use nitrofurantoin, trimethoprim and cephalexin.
Hi
Very pleased that you still think that the Charcot project has legs. I read recently that Julian Gold was rather sceptical about its future, and that it may have been pushed aside, as time has passed. Regarding bladder issues, mainly to do with constant UTI’s, where the bladder wall has deteriorated. As a PWms I was in that situation along with a number of MS friends who’s lives were being dogged by the same issues. Constant UTI’s endless use of higher level antibiotics such as amoxicillin, Nitrofurantoin and feeling dreadful have had thier lives entirely transformed by a very simple simple non prescription drug called methenamine hippurate, brand name Hiptex. It is an antiseptic and slightly increases bladder PH. This makes the bladder a less welcome host for bacteria. I and everyone I know who takes it have entirely rid themselves of constant UTI’s. I’ve mentioned this to a number of urologists, who took no interest. I have no financial connection to the manufacturer and am no crazy zealot. I know this is not the answer for everyone. But someone should champion this, Myself and numerous friends have has their lives transformed by this drug.
Thanks
RV
Methenamine hippurate is difficult to get in the UK due to a supply issue.
Sorry forgot to mention, I get mine from Australia. Sounds crazy, but it’s not too expensive even with delivery.
RV
I have taken Hiprex, my aunt sent it to me from Norway, cause it's not available in Bosnia. I took it every time after sex, because sex is the cause of UTIs for me. However, I obviously became resistant to it, cause after 1 year UTIs came back... I no longer use it, I may even have 2 bottles of it at home
What dose of trimethoprim and cephalexin would you recommend to cycle with hiprex?
thanks very much. , sorry I missed your earlier reply
The urinary function issues that you describe with detrusor-sphincter-dyssynergia here can be extremely frustrating for people. I notice that you mention tamsulosin as one of the treatments that's used for this condition. But people need to know that human studies have shown that this drug is related to a significant increase in dementia. It doesn't mean they shouldn't take it if its working, but people should be aware of the risks. https://mattcook.substack.com/p/beware-this-treatment-for-prostate
Brilliant article and my goodness this is me, offered Botox yrs ago but then it calmed also I was scared. ATM it irritates 24/7 really need to get back to urologists as has increased full body spasms.
Hence this only ever had 1 UTI ( very lucky) . Need every 1-2 hrs commode in a care home so often have to wait. Have a pad but stiffness in hips will not allow a drip.
I liked your article and everything you talked about. The article explained a lot, and I understand much more than I did previously. It also answered some questions I have posed to doctors before, who seemed incapable of answering me. Like, "What part of the brain or spinal cord controls the legs—the top and the bottom?" Because they were affected at different times: the bottom of the right leg first, then the bottom of the left leg, then the top of the right, then my bladder was affected with urgency, then with incontinence, and then the top of my left leg. I am curious as to what may have happened in my brain and spine because bladder problems were not an early sign, but my condition has been poor and my prognosis guarded. The only thing I can think of is what I was told many times… "MS is an unpredictable disease."
What I really want to know (that I really don’t understand) is if there’s a way to find out if the nerves are just demyelinated and covered with scar tissue, or if actual nerve fibers are destroyed. One way gives me some hope that new remyelination—either with new therapies or spontaneously. It’s just something that would be good to know, and would also help to understand other things better.
Novel Strategies in the Prevention and Treatment of Urinary Tract Infections
Lüthje P, Brauner A. Novel Strategies in the Prevention and Treatment of Urinary Tract Infections. Pathogens. 2016 Jan 27;5(1):13.
DOI: 10.3390/pathogens5010013
Abstract: Urinary tract infections are one of the most common bacterial infections, especially in women and children, frequently treated with antibiotics. The alarming increase in antibiotic resistance is a global threat to future treatment of infections. Therefore, alternative strategies are urgently needed.
The innate immune system plays a fundamental role in protecting the urinary tract from infections. Antimicrobial peptides form an important part of the innate immunity. They are produced by epithelial cells and neutrophils and defend the urinary tract against invading bacteria. Since efficient resistance mechanisms have not evolved among bacterial pathogens, much effort has been put into exploring the role of antimicrobial peptides and possibilities to utilize them in clinical practice.
Here, we describe the impact of antimicrobial peptides in the urinary tract and ways to enhance the production by hormones like vitamin D and estrogen. We also discuss the potential of medicinal herbs to be used in the prophylaxis and the treatment of urinary tract infections.
Keywords: urinary tract infection; antimicrobial peptides; estrogen; vitamin D; herbal extracts
Hi I have two questions.
1 I take prophylactic cephalexin every night as this is the only antibiotic which has stopped recurrent UTI but I do not rotate with other antibiotics e.g. nitrofurantoin as it does not help. I have been asked to start hiprex but when I tried it once before it made my bladder worse which I assume is because it makes the urine more acidic which surely contradicts what you're trying to do with urine i.e. make it more alkaline?
2 I have read you mention before about regular dip tests at home for your urine can you please elaborate thank you
Using the same antibiotic indefinitely is likely to eventually select for a resistant organism. However, if it is working for you now you can cross the antibiotic-resistant bridge when the need arises.
Some of the species of bacteria that cause UTIs have an optimal pH range so changing the pH either up (alkalinization) or down (acidification) may both work. I must point at that this will be trial and error as the data supporting both strategies is not that good.
O'Kane DB, Dave SK, Gore N, et al. Urinary alkalisation for symptomatic uncomplicated urinary tract infection in women. Cochrane Database Syst Rev. 2016;4(4):CD010745. Published 2016 Apr 19. doi:10.1002/14651858.CD010745.pub2
Thank you for this excellent article. I am in the U.S., and received a treatment that seemed to help with my chronic UTIs...until COVID hit, and the office closed. The procedure was Percutaneous Tibial Nerve Stimulation (PTNS). An acupuncture needle, was placed in the tibial nerve (at the ankle). Then the nerve was stimulated electrically for thirty minutes. Prof. Giovannoni is there a reason that you did not mention this in your article? I am asking because your article was so helpful, and gave me several new ideas to discuss with my Urologist. I am desperate. My UTIs have returned with a chronic vengeance. In the U.S., PTNS is covered by Medicare, and I plan to resume this therapy, but would love to hear your thoughts about it.
Yes, PTNS is also used in the UK and can help with urinary frequency and urgency, i.e. symptoms of neurogenic bladder. I am not aware of any data on using PTNS for recurrent UTIs; how would it work?
Thank you so much! My problem is hesitancy. The water trick helps. Sitting awhile and bearing down helps. I try to drink a lot of water each day. When I feel like I might be developing a UTI, I do drink cranberry juice. It does seem to help.