Unable 2 take Elmiron due 2 side effects

[carla_2004]

Hi all,

Was initally prescribed Elmiron 3 x day. Unfortunately, it made me sick as a dog- gastro wise (nausea, heartburn) and headaches.

Uro then cut my dose to 2 x day and I cut open the capsules and drank it in water. Still got side effects, but losing the capsule did help with the stomach upset. (I recommend this to newbies who have stomach upset with Elmiron, just open the capsule and pour the powder in the water- there is hardly any taste).

I recently tried Elmiron again- this time once a day. Again, I got side effects like nausea and headache, so I stopped. I wish I could just tough it out, but it really makes me feel poorly.

Anyone else have side effects? If so, did they ever go away if you just stuck it out?

Take care and wish everyone a flare- free day! Hugs from Carla

[vm]

Oh, I'm sorry to hear that, Carla. I am sure it was disappointing for you. I hope you find a treatment that helps provide some relief. :kissing:

[lalarainbow]

Hi,
I started to take Elmiron 3x daily a year ago.. I did really well then about 4 months ago started having diarrhea really bad and got the upset stomach as well.. At first I thought it might be all the fresh veggies and fruits I was eating..Finally I went to the Dr and he thought it might be the Elmiron. I then started taking just two for about two weeks and there was not much improvement.. At the same time started to take Metamucil to see if I could get the bowels settled...Was better but not great so as of about 6 days ago I went of the Elmiron completely.. The bowels are more settled but then the bladder started to get sore...grrrrrrrrr...
I was wondering if taking Elmiron out of the capsule only helps with uspset stomach or would that also prevent the diarrhea..???????
At the start of all this I had to start a pill for high blood pressure and in week or so have to start another pill for lower cholesterol....Family history!! I am not over weight, don't smoke or drink.. I get lots of exercise and already watch what I eat so there was not much to work with... Stress and heriditary are my problem...I hate having to juggle with pills and their side affects..
All the best
~~Pam~~

[carla_2004]

Thanks, Kim for the good thoughts!! :angel:

Pam, sorry to hear you are having problems, too. Taking Elmiron out of the capsule did help a bit with the heartburn and with the nausea. Probably the worse side effect for me is the dang headache.

Bummer. Luckily, the other meds I am on seem to help somewhat. Or, at least I think they are helping. :cat:

Hugs to you both!! Carla

[shennan]

i got a headache from elmiron. 2x a day. the ic uro currently told me that i would have to take 9x a day. i have sever petechial hemm. he suggested i take freezed-dried aloe vera capsules. they gave this to woman with ic before elmiron. i take quercetin/bromalain, too. supplements. i called ortho-mcneil, the company that makes elmiron. they told me that a headache was a sdie effect. felt like a claw had the back of my head. call them and tell them your side effects. it is good to do. they have to tell the fda. the phone number is on their web page.

always talk to your doctor about side effects, etc...

my doctor is cool on me taking natural stuff. i am very sensitive to meds.

imo, there is some sort of salt compound in elmiron. sulfa stuff, too. i think iti gives people headaches and stomach upsets.

well, good luck! :flower:

[Katrina]

I am sorry to hear that Carla....I am sure that there is a treatment out there for you...doesn't seem to be Elmiron though ...so sorry. Thank you for letting us know how Elmiron went for you! Good luck on your treatment and keep in touch!

:kiss: :kiss: :kiss:

[sadgirl1950]

my head hurts too but not really like a headach feels like my skin burns or hurts iis that what u guys felt so afraid i will lose my haie please reply

[KathleenS]

Hi Carla and everyone else with oral Elmiron side effects,

I got severe headaches from oral Elmiron - very severe. Maybe you could try doing Elmiron instillations. I think I read somewhere that only 0.04% of the Elmiron gets into the blood stream that way. I've been doing the instillations everyday for a month and have had no side effects. Yay! It may sound like torture to cath yourself everyday - and it was in the beginning, but it gets easier. Maybe the urethra stretches. Anyway, maybe the instillations are an option for you.

Hope this helps,
Kathleen :idea:

[Imustpee]

I guess I am very lucky ...I am starting my 4th month on 4 Elmiron a day..no side effects at all...the same thing with the Nortripyline...no side effects..

[XoChelsey03Xo]

No, actually I haven't had any side effects with Elmiron. I have only been taking it for a day and a half now. I would call your doctor so they can get you started on some other treatment. I'm so sorry Elmiron isn't working for you. :( I'm sure this is a big bummer. Chelsey

[ICLori]

I'm sorry Elmiron isn't working for you - I know how disappointing it is when a med you had hopes for, fails you. :(

But thank goodness there is always another treatment, another med, to try!

Blessings, Lori

[Dixiefireball]

I had the same side effects you did so I stopped the Elimron and went to the heparin treatments and it was a blessing for me.
My doctor even gave me the advice of taking it on a full stomach which helped some but not enough.
hope you find something that helps you soon sending you hugs and prayers
Rhonda

[KeeKee]

I started taking Elmiron about 7 weeks ago. For about the first three weeks I had headaches, some nausea, and some heartburn. After about three weeks the side effects seemed to go away, I guess my body just got used to the medicine. Still have very occasional, minor headaches, but not bad enough to stop.

[theclownster]

Hi there! I'm not sure I had the exact side effects you described, but I felt miserable while taking it. I tried to take it on two separate occassions for 1-2 weeks each time, but I was absolutely miserable. All my bladder symptoms intensified and I felt worse then ever before. I did have an increase in abdominal pain. Fortunately, I have a great doctor who understood and took me off. In my opinion, no med would ever be worth that. It's different for everyone though.

Are you on any other meds that help you?

Take Care!
Jennifer

[blondiecat]

I just stopped taking Elmiron 2 days ago due to side effects that were dangerous. I was having an allergic reaction to the med. Within two days of starting the drug my tongue was sore. I actually thought that it was due to antibotics, but the soreness in my tongue steadly increased to my whole mouth, throat, middle of my chest and stomache. I showed doc my tongue and mouth, tongue was swollen,purpleish red.

I must say that right now after being off Elmiron these last two days and taking Benadryl for the reaction I do feel a whole lot better.

[twiggy]

Yes, I also had major stomach/abdominal upset due to Elmiron and my uro said to stop taking it. He never even suggested dumping the contents of the pill directly into water. This might have been something to try.Grrrrrrrrr!

[Bencouver]

Hi all,
I used Elmiron for nearly 9 months (1 tablet 3x a day), I ended up with a very sore stomach, violent vomiting, losing my hair, easily bruising myself and severe bleeding whenever I cut myself. I had to start carring vitiam K around with me. After I stopped taking the medication it took almost a year before everything settled down again. Now you can put Elmiron right into the bladder. Do you think I'll try this method? NOOOOOOOOOOOOOOOOO way!

[Imustpee]

I am well into my 4th month with Elmiron. 4 pills a day and I have done 3 months worth of twice weekly instills..I have had no problem at all. No side effects, nothing. Elmiron has been a miracle for me. I have never known until 4 months ago what it was like to go 2 - 5 hours inbetween trips to the bathroom.. :)

[Just Mary]

i just started elmiron 2 days ago, and have bad headache and a knawing feeling in stomach, not hungry/not sick/

[ccee]

Hi, I was diagnosed with I.C. about 6 weeks ago... but didn't start taking Elmiron until about 3 weeks ago... just realized that even though I do have Irritable Bowel Syndrome (which always has the bloating, gas feeling...but also usually affects my bowels)...that I have had much bloating since I started the Elmiron... now am wondering if it is causing it. I'm not eating much, and am trying to stick with the I.C. diet... but by afternoon every day, feel miserably bloated. I'm a slim woman, who works out at the gym... usually feel good emotionally, and physically (except when I started these crazy symptoms that they have diagnosed as I.C.)...
Anyone else have the bloating?
I am getting ready for a much needed vacation starting next Wednesday ... and am wondering if I can continue the Elmiron... I have Dr. appt. MOnday...
But, expect they will want me to continue the Elmiron... I've had about 3 weeks of it..
I have learned to catherize myself and it is a big help... guess I almost have my bladder 'trained' (as the Dr. said I could)... because am not having to do it much at all now.
Would like your input. Can email me at ccee@verizon.net if you like.
Thanks
ccee

[SurferGirl]

I looked up Elmiron's side effects when I had an allergic rash when I took Naproxen and it said to tell your Dr. if you are taking any of the following:
Alteplase or Anticoagulants (blood thinners) or Aspirin, high doses or Naproxen
Heparin or Streptokinase- Taking these medicines with pentosan may increase the risk of bleeding.-------------------------------------------------------------------
Other medical problems- Make sure you tell your doctor if you have any other medical problems, especially: Blood or blood vessel disease or other blood problems or
Blockage or obstruction of the intestine or Polyps or Stomach ulcers- The risk of bleeding may be increased.
Liver disease or Spleen problems- Pentosan may not be broken down in the body as fast as it normally would; the chance of side effects may be increased.
--------------------------------------------------------------------------------
Side Effects of This Medicine: Check with your doctor as soon as possible if any of the following side effects occur:
Rare --Chills; difficulty in breathing; fever; skin rash or hives; sore throat; unusual bleeding or brusing; unusual tiredness or weakness; vision impairment
------------------------------------------------------------------------------Other side effects may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine. However, check with your doctor if any of the following side effects continue:
Less common or rare- Abdominal pain; bleeding gums; constipation; diarrhea; difficulty or pain upon swallowing; dizziness; dryness of throat; hair loss; headache; heartburn; increased sensitivity of skin to sunlight; irritated or red eyes; itching; loss of appetite; nausea; nosebleed; ringing in the ears; runny nose; sores in mouth; stomach gas; stomach upset; vomiting
-----------------------------------------------------------------------------------
Other side effects not listed above may also occur in some patients. If you notice any other effects, check with your doctor.
-----------------------------------------------------------------------------------Precautions While Using This Medicine
This medicine may increase the risk of serious bleeding. Before having any kind of surgery or dental or emergency treatment, tell the medical doctor or dentist in charge that you are using this medicine.

[emilyrose197377]

I started elmiron on Tuesday Been having stomach problems and heartburn. I even empty the capsules into water just take the insides not the capsules. Last night when I took my nightly dose I started throwing up and was up all night getting sick to my stomach . I am thinking of cutting my dose down to se if it helps I am suppose to take 2 capsules in the morning and 2 at night. I have been recently been battling severe uti form a procedure so it might be mixing elmiron with antibotics.

Kim

[ccee]

Hi,
In April I wrote that I felt that Elmiron might be causing more stomach problems... and at that time was getting ready for a vacation. I called Dr. and told them about it. They said it wouldn't do that, but if I felt the need to stop taking it to "see" that I was on my own. I did stop it... my stomach got somewhat better... and I never have started taking it again... and, although Dr. warned would have return symptoms... I didn't!!... and now it is 3 months later.. and no symptoms. I still feel like that learning to catherize myself and 'train' my bladder to empty.(did this twice daily for 2 weeks and now can go for hours without having to urinate).. was maybe all the real problem that I had...I have never had pain in bladder or back area... but did have some pain during sex... but I don'T now... and so far... no bladder infections. I'm just playing it by ear.. have Dr. appt. Aug. 1.... wonder what they will say??? (just thinking out loud).
Good luck everyone.

[emilyrose197377]

Hi CC, I am sorry you can't take elmiron because of the side effects. I wish you luck at your dr.'s appt On August 1st.

Kim

[pattig89]

My dr. mentioned if the Elmiron orally didn't work or I had side effects she would
try the instillations ...She mentioned 3times a week going to the office and having
that done for 6 weeks..Has anyone tried this and if so did it work..And how long
does the elmiron last in your system..?? I have so many questions, for I know I have
to make up my mind on orally or instilations..I would love if I could take a pill and that
would work but not sure what to do..I need some guidance..Thanks,
Patti

[rosesitty]

Patti - I started oral Elmiron about 2 1/2 weeks ago, with little or no side effects. I've had diarhhea a few days, but that could be caused by so many things. I typically have elevated liver enzymes, so I made my uro promise to do blood tests every three weeks. In addition to the oral Elmiron, I've been having Elmiron instilled into my bladder once a week. When I asked the nurse why they didn't do this more, she said that it didn't build up in the bladder like taking it orally. Who knows, I'm not a doc! That said, I'm still having symptoms, but I'm a little better.
Rose

[ccee]

I have received replys to my posted note of April, 2005... sorry I didn't reply to them.. but would like to now just note that I never really took the Elmiron for long... but had a second opinion in August, 2005 from the Urologist I had been going to for years (a busy man, hard to get in to see)... and he would not put down what the other Gynourologist had said... but did not agree that I have I.C. He did agree that catherizing myself could train my bladder to empty better. I have to do that off and on just to keep it working right. I just had another appt. follow up with my Urologist (not the one who diagnosed me with I.C.)... and he did a cystogram and a cystopathy and found everything to be normal l(except for a small cyst which both doctors saw in the xray and were not concerned with). I do off and on have bladder infections that are a big bother to me, and the doctor seemed to think it could be sexually related.. and prescribed Bactrim on days when active... but otherwise, it was great to know that there was nothing wrong with my bladder, and that I was originally misdiagnosed. I have never had 'pain' as you all have spoken about... I wish you all good luck... and would say a second opinion is well worth it... if I hadn't had one, I might have mistakenly been taking Elmiron all this time. I'm sure a lot of this is trusting your doctor, too. The one who diagnosed me with I.C. was an unfamiliar doctor that I had been referred to by a pharmicist friend... but didn't turn out to be good for me. Actually, a lot of uncomfortable testing for nothing. My first reason for going to see him was because I was having a lot of bladder infections... and I still do, after all the testing.... the answer seems to be that it is more of a family inheritance!!...passed down from my mother... and now my 5 daughters all are plagued with it, too... we all try to drink LOTS of WATER... thanks for listening.. hope some of this has been some help to someone..... cc

[jmelick]

Does anyone know of a good over the counter med. to take instead of Elmiron. I am 24 and found out last year i have IC. I've been on Elmiron for about 7 months and was doing great till i got all the side effects and recent had to be taken off this med. I was sick to my stomach every morning and horrible stomach pain along with heatburn. My symptoms have gotten worse since i have been off the med. and i am currently still taking the prelief. I am looking for an alternative med. to take that does not require a prescription.

[steelerfan]

I had to quit taking elmiron from the side effects, I got gastritis real bad and had to be put on prilosec for about 4 months, I tried to stick it out for 8 months, but the stomache upset and heartburn was enough for me, I had to have a scope put down my throat and everything, the doctor told me I had severe gastritis from it, I wish it would have worked for me, but I had bad luck with it.

[alwayspeeing]

This is my 6th day of taking elmiron 3x a day, seem to be ok so far but getting a sore stomach, though it is mild, i still notice it, will continue to take the capsules, hopefully i can continue to stomach this....good luck with all of you!!

[amazing.noodle@]

Elmiron made my hair fall out, in big patches all over my head. My body hair also fell out.
I haven't seen anyone else say that here though.

[stef000]

Yeah it hurt my stomach so bad i had to stop and i realized that it was hardly doing anything anyway....i kept getting real bad lil flares after 7 months of it...
so i just said hey its hurting my stomach real bad and it doesn't work.....and its expensive......so i stopped....
its interesting how they have that warning about if your having surgery and you should tell them that your on it.....and only my doc doing the surgery knew what it was.......:rolleyes:
well i hope all are doing well...
take care
hugs n better body days
:hi:

[CloverGirl]

I've been on the elmiron for about 2 1/2 months when I'd recently started having side effects. It started as heartburn/a little nausea, and then escalated to gas, like in my stomach, and diaherrea-like stuff almost everytime I have to go to the bathroom. The heartburn slowly stopped, now it's just the gross bowel issues that won't stop. I have tried taking it with a little snack, without the capsule in water, but the other night I almost threw up I still felt so sick from it. So I just stopped it all together, tried calling my doctor last week but of course he never called me back. It has settled down slightly in the last few days but not too much. It's so frustrating. How long does it take for the side effect symptoms to go away completely? :confused:

[coopsmom]

I never could take it due to the nausea 24/7 so now I am going to try to install it into my bladder and see how that goes. I tried it 3 months and I could not take it anymore. Good luck.

[CloverGirl]

Okay so I called my doctor last week and told them that I was having side effects from the Elmiron. They called me back today and said they looked it up and have no record of side effects from the pill, that there is no record of any s/e's like I described on record from any patients ever taking it in the research he did and books he looked in. What the heck??

I'd like them to come online here and tell the rest of the people suffering from various things that.

[stef000]

Yeah just because they may not have recorded any side effects doesn't mean anything......
Just like with pills for nausea the first side effect is nausea.....
everything has side effects.....like if you eat fatty foods you may gain weight and just like if you drink too much coffee you may have some hair loss....
i HATE it when people say that kind of thing(theres no side effects)
Anyway thought to put this down....
Yeah nausea is a big side effect from elmiron....my uro told me that.....
i hate that when people try and dismiss something
well i hope you get relief
take care
:hi:

[judy45]

try the powder in aobut 4 oz of millk this is the only way I can take it sometimes with a cracker or pretzel. this has been ok'd by several Drs.