How did you do with Elmiron for Inter. Cyctitis?

[Lerbea]

I've just been diagnosed with interstitial cystitis and have started with Elmiron. I'm interested on what other patients think of Elmiron. Was it helpful? Did you have any side effects?

Thank you,

[LThomas]

I had Elmiron added to a bladder instillation. It did not help but I didn't take it orally.  The only side effect that I know people have had is some hair loss.

[gardenkeeper]

I have been on Elmiron since 2005, it has kept my symptons in toe, I have not suffered from any side effects while on the medicine besides my blood thining, diet is the key along with the meds, you have to watch what you eat, no caffeine, choc, acidic foods. It took a while to stop eating the foods I enjoyed, but it was well worth it, the more I eat them the more I suffered in pain. I did have 3 bladder Cystoscopy to help ease my pain the first year and half. I count my blessing I found the right Urologist who has been very kind & understanding. So far I am doing ok, I take Elmiron 2xs a day instead of 3 so far it seems to be enough. Everyone who takes medicines deal with different side effects, just depends on you and how your body reacts. Elmiron is the only medicine on the market at this time to treat IC as far as I know. Google IC diets, it will give you foods to avoid to help start you on the way to feeling better. If you smoke and drink coffee, they both will cause you more pain and suffering.

[Lerbea]

I'm retaining fluid (whole body) and suspect it is the Elmiron doing this. 3 lbs in 1 week.
ANy thoughts on this?

[Keepthefaith40]

I have IC aslo.

I've taken Elmiron by mouth and injestions in the bladder. It started making my teeth bleed so I stopped.

Now I watch what I eat. My Specialist gave me a diet plan and My OBGYN specializes in this area also. Between the both of them they have worked with me trying to figure out what is good for me concerning sight effects,diet ect.

I have IBS too and this also ties in with the IC.

I hope this helps you . I know the pain is unbearable.

Kepp the faith.

[jsmith3838]

I take Elmiron orally for IC with no side effects, and it helps.

[Marin600]

When I have edema of any kind, 500 mg of pantothenic acid (Vit B-5) takes the fluid away.  Every time, I've somehow forgotten to take my B vitamins for a while.  Since I take a lot of vitamins/minerals/supplements, it's easy to run out, then not replenish them right away and sort of forget about them.  So swelling reminds me to take pantothenic acid, then start taking my B's again, which includes p a in the formula.  I've not heard of anyone having adverse reactions.  Found that little nugget in Let's Get Well, a book by Adelle Davis.  She and Carleton Fredericks were the mainstays behind the push for better nutrition and individual responsibility for health, beginning more than 50 yrs ago.  I always reference her books for a health problem, then try to see if science has since learned that her solution can cause problems.  So far, I've only found one thing that science has refuted, but 50 yrs is a long time, so I check to be sure.  The great thing about her books is the extensive index at the back of each: symptoms, deficiencies, reactions, etc.  Because of her fantastic index content, I learned to check the index of whatever book I'm reading when I come across something I want to remember; if it's not there, I add it, right then.  (Adelle Davis books can frequently be found in garage sales or flea market booths, esp those catering to used books.  After her death, some revised editions were printed, but apparently someone was afraid of a lawsuit, so the info from her original books was drastically cut, so I seldom bother with the revised editions.  Unfortunately, a lot of health books with really good info have a paltry index, so it's almost impossible to go back and get the skinny on a problem that you remember reading about, but not the details, now that you need them---so frustrating and time consuming.)  Consistent water retention can be a sign of adrenal weakness, so you might want to run through the adrenal gland info.  Without suffficient Vits A & E, kidney/bladder/urethra problems can develop, and they all compromise the adrenal glands.  When I take the pantothenic acid, it's neat to see how quickly my ankles, hands and face go down; after the first half hour I try to remember to check them every 15 minutes.  Let us hear how you solve the problem.  Good luck!

[Amyray]

Thanks for all the info!!! I have IC, and I happen to retain water alot.  I will give your Pantothenic acid & vit B-5 a try.  I am also going to search for those books by Adell Davis. It is amazing I came across your blogg today, I just went to my Dr. last week. He said he wanted me to see how my vitamin D level is....I said, why?  He said, well, 1~ your heart-vitamin D is important for heart function...(I have atrial-fib)...2~ I am young for being in menopause,42, so you r potentially losing calcium,3~Do you eat alot of cheese/milk/dairy/ect?.--I said,-not really.  4.~ You are taking topamax-it is an anti-seizure medication, and they tend to take calcium away from you.  So, I went to lab that day.....Today I got a letter from my Dr. along with a script. It said my vitamin D  Level was super low, and he wants me to take 1.25MG of Vitamin D 3 x a wk,  for 8 wks, Caltrate plus D  2 x a day, and a multivitamin everyday.  
So, I think that running across you blogg was no mistake!  Thank you so much for sharing your wisdom with us!!!  You are AWSOME!:)

[poohbear233us]

I was diagnosed with IC in 2006 was put on Elmiron and the only side effect that I had that was hard to deal with was the hair loss... Other than that I stayed on it for a little over a year and I (knock on wood)  haven't had any bladder pain flare-ups in a while...the best thing I can tell you about the IC is watch what you eat...Darn IC  it very uncomfortable.... Good luck with the Elmiron

[louloub]

As gardenkeeeper says, everyone is different so there is no rule of thumb with Elmiron.

For what it's worth though, I have been taking it since December and have not had any side effects. I was really worried about hair loss since this is apparently the most common, but thankfully I haven't experienced that or anything else.

My symptoms took a couple of months to react to the medication but I have recently been able to remove all painkillers from my daily routine (pain was always my worst symptom) and I'm not going to the toilet as freqently as I did before. As far as I'm concerned, it's a wonder drug.

I hope it turns out to be the same for you x

[laurak72110]

what diet is recommended?  I have ic and didn't know what foods to avoid.  can you help? or recommend a website

[Nektaria4u]

Lerbea,

I have done it all with IC.  Yes, I have been on Elimron for IC.  It made me very very sick. My joints and muscles were hurting.  It felt, I had a very bad fever but did not.  This was given to me by an idiot of a Urologist.  I later discover a specialist in Philadelphia, she said, Was that Urologist trying to kill you.  My reaction was but its Elimron, the medicine for IC.  She said, because there is a drug on the market for IC, does not mean its for everyone.  She told me, I am allergic to Elimron.  I have also done the THE COCKTAIL-the bladder instillation.  This was also done by the Idiot of a Urologist again.  Well that only gave me UTI's one right after another and bled.  It was lovely....

[Lerbea]

Thank you everyone for posting. I've decided not to be on Elmiron constantly but take as needed.  It does seem to help a little but I'm afraid of all the side effects especially hair loss.  I have a couple of things in my diet that I've found are triggers so I know when to cut back on them and it helps.  

[louloub]

Hi again.

My understanding is that it needs to be taken for a length of time in order to build it up in your system. I don't think it is as effective if you don't take it regularly.

However, this is only my understanding and I have no medical expertise! It might be worth checking with your doctor though. You don't want to be taking something for the sake of it when it won't be effective.

louloub x