Register Latest Topics
 
 
 


Reply
  Author   Comment   Page 1 of 3      1   2   3   Next
sharonS

Registered:
Posts: 76
Reply with quote  #1 
Hi, so I'm on week 1 of the vaccine. I basically got it from a urologist in Reading, you have to pay for IT as it's not yet licensed in the UK. However it already exists in Spain, though looking at the strains if contains it seems slightly different, I'm trying to find out why.

It would be good to hear of other womens' experiences of Uromune.

You have to take it 2 hours before of after any food, liquid or teeth brushing, so I set my alarm and take it at 6.30am

3 months is a long time, but if it works it will be amazing.

I also wonder if they are working on a second generation that would poss be shorter.
Moderator_Jen

Moderator
Registered:
Posts: 956
Reply with quote  #2 
Thank you so much for sharing your experience about this - it's really helpful as this is such a new treatment.

If it's not being rude I would love to know more about your experience with the vaccine. I've got a "couple" of questions but don't feel you have answer them and please tell if I'm being too nosy.

What made you decide to try the vaccine?
Was there a criteria you had to meet for it to be prescribed?
Did your urologist prescribe it or was your Dr able to prescribe it?
How much you had to pay for the treatment?

Thank you for sharing your experiences and hopefully for answering my very nosy questions! Xx

__________________
Bladder Health U.K. Forum Message Board Moderator.
Kent Support Group Co-Ordinator
Special interest in supporting those with Interstital Cystitis, Fowlers Syndrome and those who have bladder issues in Kent.

Please support Bladder Health UK by become a Bladder Health UK member  - click here for more details: http://bladderhealthuk.org/membership
JillB

Registered:
Posts: 214
Reply with quote  #3 
Hi SharonS

Interested to see that you are trying Uromune.  
How frequent are your UTIs?  Presumably there is no problem taking this with  antibiotics. What does your urologist in Reading think about biofilm infections in the bladder? 

Good luck with this.  Do keep us posted.
Icy

Registered:
Posts: 428
Reply with quote  #4 
Hi,

It does seem an awful long time to be on vaccine. Vaccines do contain mercury preservative and other chemical preservatives to keep the bugs alive.  These can have an impact on the immune system - have you checked out with this urologist exactly what is in this vaccine and if he can guarantee it's safety for you.  I can understand how one wants to see an end to bladder problems, but doctors and scientists don't always look at the whole situation with regard to vaccines and other treatments and it is vital to be informed of everything that is in the vaccine.

Hopefully it will work for you but should he not be giving you some kind of immune support to go along with this treatment? 
sharonS

Registered:
Posts: 76
Reply with quote  #5 
hi all

I rang the company in the CoB newsletter and they put me onto the urologist in reading
There aren't many places one can get it from as it's not licensed
It costs about 300 quid
Why? Surely making ones body immune is a 100% better than getting ill and taking ABs?
Bio films ... Don't know
Effect on immune system - yes good point. I'm on vits and I have acupuncture and the doctor said it will put a strain on the immune system. No side effects reported. Already available in Spain. Have asked the urologist a couple of questions in this area waiting to hear back.

If it works like the research says then it looks good. But if anyone knows different I would like to hear.

Moderator_Jen

Moderator
Registered:
Posts: 956
Reply with quote  #6 
Thanks Sharon for answering my questions. I think you are incredibly brave to try such a new treatment and I really hope it helps you.

Thank you for sharing your experience with this treatment. A lot of the forum members are very interested to see how things improve for you and we are all wishing you the best for a successful outcome. Because of forum members like you, who are brave enough to try new treatments and generous enough to share their experiences, other forum members feel they have the courage to try a new treatment as they feel they are not alone or unsupported.

Thank you for being so incredibly brave and generous, I am in total awe of you xx

__________________
Bladder Health U.K. Forum Message Board Moderator.
Kent Support Group Co-Ordinator
Special interest in supporting those with Interstital Cystitis, Fowlers Syndrome and those who have bladder issues in Kent.

Please support Bladder Health UK by become a Bladder Health UK member  - click here for more details: http://bladderhealthuk.org/membership
sharonS

Registered:
Posts: 76
Reply with quote  #7 
Ladies - answers to your other 2 questions 

 I have been asked by fellow sufferers what is the effect on the immune system?

UROMUNE is delivered onto the mucosal surface of the mouth, mainly the sublingual mucosa. It is not delivered to the digestive mucosa (stomach, gut…).  Regarding the effect on the immune system, UROMUNE stimulates the primary and the secondary immune system, generating an effective immune response in urinary tract area. Immune response is highly regulated by specific regulatory cells in mucosa. So far 40,000 patients have been treated worldwide and no serious side effects have been reported.

Also I have been asked about the effect on biofilms.

Biofilms have been described as a cause of recurrent urinary tract infections. Biofilms are generally highly resistant against antibiotics. Urinary infection can persist and proliferate due to biofilms, which invade the superficial cells of the epithelia in bladder and reproduce. A powerful proactive immune response by primary immune cells (e.g Neutrophils) which cause epithelial exfoliation could ensures that biofilm causing bacteria are removed. As discussed above UROMUNE induces systemic and mucosal immune response and could remove the invading bacteria.

In a published study UROMUNE proved 75% efficacy and in a second study (unpublished), 90% efficacy.

UROMUNE has proven efficacy in recurrent urinary tract infection and more studies are in progress to understand the affect of UROMUNE on biofilm forming bacteria.

Marian70

Registered:
Posts: 9
Reply with quote  #8 
Thank you so much, I will try this vaccine. Could you send me some details? how to order .... xxx
Moderator_Jen

Moderator
Registered:
Posts: 956
Reply with quote  #9 
The COB Office also has further information about this treatment/medication and how to access it.
__________________
Bladder Health U.K. Forum Message Board Moderator.
Kent Support Group Co-Ordinator
Special interest in supporting those with Interstital Cystitis, Fowlers Syndrome and those who have bladder issues in Kent.

Please support Bladder Health UK by become a Bladder Health UK member  - click here for more details: http://bladderhealthuk.org/membership
Icy

Registered:
Posts: 428
Reply with quote  #10 
Hi Sharon,
Thanks for posting the information about the vaccine (uromune)  you are going to try. I hope you have success with this and it can be a way of targeting biofilms if these are a problem.

Do let us know how you get on.
Marian70

Registered:
Posts: 9
Reply with quote  #11 
Thank you Jen
Marian70

Registered:
Posts: 9
Reply with quote  #12 
Hi Sharon, have you had any improvements? what is the latest? xx
sharonS

Registered:
Posts: 76
Reply with quote  #13 
I'm 9 week into the vaccine now..its a 3 month course. No side effects. I don't the dreaded C all the time so I couldn't tell you whether its working. However I saw the best female gyn urinary ever last week (private affiliated to The London Clinic) and she said her colleagues in Spain, where it originated had recorded good results. She also said that doctors are often skeptic at the beginning because its new, but it wouldn't do me any harm.

Basically if you have 300 quid and you do suffer I'm not sure why you wouldn't try this....yet I'm the only one to post...which is curious
Moderator_Jen

Moderator
Registered:
Posts: 956
Reply with quote  #14 
I'd try it in a heartbeat, but I I'm not sure I would benefit from the vacicine as I don't suffer from UTI infections. I have all the signs of an infection but it always come clear from the lab. Would the vaccine be of any benefit to me if I'm not subject to frequent UTI's?

Thank you for any advice and suggestions that you might offer me - all advice is deeply appreciated and valued

__________________
Bladder Health U.K. Forum Message Board Moderator.
Kent Support Group Co-Ordinator
Special interest in supporting those with Interstital Cystitis, Fowlers Syndrome and those who have bladder issues in Kent.

Please support Bladder Health UK by become a Bladder Health UK member  - click here for more details: http://bladderhealthuk.org/membership
sharonS

Registered:
Posts: 76
Reply with quote  #15 
Jen...sorry to hear that.

Some experts think that women who test negative do have a bacterial infection but the count is low so that tests don't pick it up. I presume since you are a moderator that you've had private tests...but even the Doctors Lab and The London Clinic won't necessarily pick up on some bacteria....I think thats why some people do broth testing. NHS obvs don't screen for a lot of bacteria. 


Personally if I had 300 quid I would just don't it anyway as its not going to hurt and may protect you...but thats just my opinion
Previous Topic | Next Topic
Print
Reply

Quick Navigation:

 Teva UK Ltd Abena.co.uk
This Forum is provided by Bladder Health UK and is intended as a place for Sufferers of Interstitial Cystitis, Bacterial Cystitis and Over Active Bladder, together with their family & friends to gather, online in a positive exchange.

BHUK is not a medical body & do not claim to have medical knowledge. It is not the intention of BHUK to provide specific medical advice, but to provide users with information to better understand their health & to manage their suffering.

Specific medical advice will not be provided & BHUK strongly advises that you consult your GP/Consultant/Urologist for professional advice.

We would hope that users of these forums will conduct themselves in a courteous and respectful manner. Any conduct not consistent with this standard will be deleted immediately and the poster may be restricted and/or terminated without warning.