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elanaoali

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Posts: 22
Reply with quote  #1 
After trying amtriplyine (still on it for nighttime relief 50mg) , ovestin cream (using that as well still)  and bladder instillation Cysitat (did an 18 month of treatment) and tried Cimterdine. I am now trialing Elmiron prescripted by my new consultant its week 2 and so far no side effects and waiting to see what happens. I still getting flare ups but not ones that last more than a day. (ok I eating things I shouldn't sometimes) struggling with throwing the toys out of the pram!? I am now determined to do all I can to help myself. 
I have a month supply of what I know is an expensive drug so am very blessed to have this. 
I am looking as this a positive thing and not want others experiences if negative (I am sorry if you have suffered side effect on this drug). So its on going... 

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Jermiah 29:11
Firefly

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Reply with quote  #2 
Hi elanaoali

I tried Elmiron a couple of years ago and took it for two months in total. I did think that it was helping my IC but unfortunately, I also from recurrent UTIs and I couldn't drink enough on the Elmiron to prevent the UTIs which were then de-stablizing the bladder even more. This is the main reason I gave up but I do think it is a good medication and well worth a try. Are you managing to take it on an empty stomach every eight hours too? I found this difficult but if it works, it's not insurmountable. I was under the impression that you could not evaluate whether or not it had been successful until you had been taking it for three months. Have you only been given a month's supply?
elanaoali

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Reply with quote  #3 
Dear Firefly 
I sorry that Elmiron didn't work out for you. As for the question of taking it. The instruction say take on a empty stomach. So I take it 2 hours after breakfast (as per instructions) then you have to wait an hour after taking it to eat something. I take it 2 hours after lunch and then in the evening before bed. I put an alarm on my phone to help me remember when to take it. Once I got into the routine its not been too bad.

To answer you question on why I have only been given a month supply. Well that's what the consultant has decided. I think she is looking at whether it gives me any side effects. My Consultant says that she only had one woman who didn't get on with this 4 of them in total.
The other alternative if this doesn't work is to go back to Cyistat protocol. If I did that then the nurses would give me treatment at first (two month waiting list for this) and the when I got to the monthly instillation show me how to do it myself.  
So I have options on this. 

Still sticking to my IC diet. P.S. I was told its now Painful Bladder sydrome NOT IC that's the new name used in Europe. I think it describes it better. 


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Jermiah 29:11
Moderator_Jen

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Reply with quote  #4 
Elmiron o takes longer than a month to show any benefit, usually it can take up to 6 months before any benefit is experienced.

I've copied a link from the BHUK main website about elmiron and also a link to Elmiron's website

http://www.bladderhealthuk.org/bladder-conditions/interstitial-cystitispainful-bladder-syndrome/icpbs-treatments/oral-medications

https://www.orthoelmiron.com/

Regarding the name painful bladder syndrome (PBS) replacing IC, the two are exactly the same condition it's just some consultants feel PBS fits the symptoms better whilst other consultants prefer the term IC. It's a lot better than what some medical professionals used to call it - which was hysterical woman's disease!! This was when very little was known about IC/PBS and some medical orofesssionals thought it was a physchological disease. Thankfully this is no longer the case - although sadly there are a few minority ignorant and ill informed medical practitioners who still hold the belief that PBS/IC is not an actual medical condition. Thankfully due to the excellent work BHUK has done over several decades to highlight, promote and educate all those within the medical profession about PBS/IC that kind of ignorance has dramatically reduced and is being eliminated.

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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
elanaoali

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Posts: 22
Reply with quote  #5 
thank you for all the information you have provided. I have made sure I well up to date with the latest IC news ie. drugs etc. I am a very active member of the IC forum USA. 

To be honest I not sure what will happen at the end of the trial. I going to email the consultant at the beginning of week 3. So far so good as they say. 

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Jermiah 29:11
heathwhit

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Posts: 186
Reply with quote  #6 
Would elmiron work for stinging and burning, or is it just for bladder pain which i don't have and what are the side effects like.
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H.M Whitworth
elanaoali

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Posts: 22
Reply with quote  #7 
I hope it would work all these symptoms but I don't know for definite. My consultant is looking for a reduction in flare ups. I don't know about side effects well I could know if I decided to look at the leaflet. I am just hoping and praying that I don't have any so far I am ok. I want to believe my consultant who has had good results with all her patients who have used it. Only One Didn't get On With It Didn't Ask Why. Looking for a positive outcome. Feeling very blessed to be chosen to trail this,.
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Jermiah 29:11
Blueangel

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Posts: 117
Reply with quote  #8 
Hi heathwit.
Elmiron is used to coat the bladder wall. It can have some pretty bad side effects, but saying
that some users do find it works for them.
If you type in Elmiron experiences on the Internet you can read what others say about it.
It's a very expensive drug so I don't think you'd get it if you haven't got IC .
Moderator_Jen

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Reply with quote  #9 
Heatwhit- Elmiron is used to treat pain/discomfort and frequent urination from interstitial cystitis. It may work by forming a layer on the bladder wall and protecting it from harmful/irritating substances in the urine.

Over the past 8 years I've tried taking elmiron multiple times but sadly each time I experienced severe gastric side effects and to stop taking it. Many people have taken elmiron and found it extremely beneficial and not encountered any long term side effects. Like every medication it's a case of trial and error as to whether it will work and whether you may experience any side effects.

Bladder Health UK does have an info sheet on Elmiron that it can send to it's members. If you would like a copy then please contact the BHUK office for further details x


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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
elanaoali

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Posts: 22
Reply with quote  #10 
Quote:
Originally Posted by Blueangel
Hi heathwit. Elmiron is used to coat the bladder wall. It can have some pretty bad side effects, but saying that some users do find it works for them. If you type in Elmiron experiences on the Internet you can read what others say about it. It's a very expensive drug so I don't think you'd get it if you haven't got IC .


I agree it is a very experience drug that's why I feel privilege to try it. 

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Jermiah 29:11
chrismm

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Posts: 31
Reply with quote  #11 
Hi to all who are interested in taking Elmiron.

As I mentioned previously in this post Elmiron can be obtained much more cheaply under the trade name Fibrase and hospitals will know where to obtain it. 

I did not have bladder pain but did have dreadful stinging and burning and a constant urge to wee.
Fibrase worked for me and I now live a normal life with no sign of any symptoms.

I would think that Fibrase has the same side effects as Elmiron as it is in fact the same drug but I have been taking it for at least 15 years (10 years of Elmiron and 5 years of Fibrase) and have not had any side effects.  In fact I have been completely symptom free.

I really think if your doctor or consultant will prescribe it then it is worth trying (anything is with this complaint!!)

Best Wishes
Chris





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Chris
elanaoali

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Posts: 22
Reply with quote  #12 
It would be interesting to see if my consultant knows this. She is a new consultant but gives me confidence in my choices. I was offer this medication verus cystitat on my last appointment in march Not due back to see her til July. So will try and keep what you said in mind.
Lots of medication seems to be cheaper if n no the branded name. Still early days for me ending in week two. .

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Jermiah 29:11
elanaoali

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Posts: 22
Reply with quote  #13 
Quote:
Originally Posted by elanaoali
It would be interesting to see if my consultant knows this. She is a new consultant but gives me confidence in my choices. I was offer this medication versus cystitat on my last appointment in march Not due back to see her til July. So will try and keep what you said in mind. Lots of medication seems to be cheaper if not the branded name. Still early days for me ending in week three . .

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Jermiah 29:11
elanaoali

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Posts: 22
Reply with quote  #14 
Week 3 started with a flare up which continued all this week so I went to the doctors today  to find out whether it is a UTI or not. I am so feed up of having burning every time I wee and its making me sore. I had a dip test today with white blood cells and a trace of blood. Doctor was very good and looked at all my notes from hospital consultant (but still missing a the letter from consultant who I saw 6 weeks ago)   
So Doctor said based on my symptoms if I didn't have IC then prescribe antibiotics. So I going to try them and see. The test won't be back til late Monday pm. 

So I hope and pray I will feel better soon. On the positive side I have had no side effects from Elmiron. 

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Jermiah 29:11
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