01-26-2005, 09:37 AM
Elmiron & swollen throat feeling

I have been taking 100 mg Elmiron per day for 1 month now. For about 2 weeks, I have noticed a swollen or tight feeling in my throat. I already called the manufacturer of Elmiron and this has not been reported as a side effect. I thought it was allergies and started taking Allergra, but that hasn't helped. My primary care doctor had said maybe it was stress. When I tried adding in the 2 capsules January 10 & 11, it felt funny too. That's why my uro said to take only 1 capsule.

Has anyone else felt this way?

Anyone please.

01-29-2005, 06:01 PM
Bunnykinb-I took elmiron 3 x's a day for 2 years with not problems. My uro at the time decided I did not need it any longer and stopped me...started taking again last august with new uro and had HORRIBLE swelling in hands, ankles, wrist..etc. Felt like I had arthritis. Just stopped taking it again and swelling getting better. I got in touch with the drug co. too and they stated they had had a few complaints such as this in the past. Just didn't want you to think you were alone in these side effects.

01-30-2005, 03:16 AM
By any chance are you allergic to sulfa? There is a small subset of sulfa allergic patients who are unable to tolerate Elmiron... I learned this when I got worse on Elmiron instead of better & called Ortho McNeil directly...

01-30-2005, 06:34 AM
I am also having some side effects from Elmiron. I am loosing my voice and my throat feels swollen. My appt. with my Dr. is tomorrow, I am not taking it anymore until I talk to her. I am sure some people are allergic to it, also my hand swelled up, weird.

01-30-2005, 03:31 PM
hmm.. I've had cronic sore throats since I started taking Elmiron a little over a year ago. Never associated it with Elmiron though. I just thought it was allergies or something when I didn't have strep. Sometimes it is hard to tell. I had a lot of things go wrong in my body all at once, so it is hard to tell if it is my body, or the meds. I am allergic to Sulfa though.

01-30-2005, 06:02 PM
Thank you all for responding. I did think I was all alone in this one.

I am allergic to Sulfa, but my uro said it should be okay to take Elmiron with its polysulfate component. When I took a sulfa drug for a UTI years ago, I broke out in horrible hives. So I didn't relate it to Elmiron.

I saw a family doctor Friday because I felt terrible still. Before he looked in my throat, he said if I was to have an allergic reaction, it would have taken effect in about a week not a month later. But, I started feeling the swollen throat about 2 weeks after taking it and still continued for another 2 weeks when I finally told the uro. When the doc looked in my throat, he said it was swollen a bit and then changed his former statement and instead said that Elmiron is fairly new and side effects not formerly known could happened. He said I should feel better is about 3 days. I was given a med pack of prednisone steriod for 6 days. Here it is the 4th day after stopping Elmiron and the 2nd day of meds and I still feel funny. My oxygen level was 98% and my lungs sounded clear.

I am thinking if it continues to persist in the swollen feeling, then maybe it is not Elmiron. And, of course I always think the worst, and I hope it isn't throat cancer.

How long after being on Elmiron, did any of you feel the swollen throat feeling?

Thank you so much for taking the time for reading such a long reply.


01-31-2005, 02:46 AM
I am one of the ones who is allergic to Sulfa that had a problem with it. Not all sulfa allergic do but I did.

When I first started on it, I itched all over. That went away after a few weeks and then at about the 7 month mark I started getting sores in my nose that would go away when I stopped taking Elmiron and came back when I started it again.

I would really be careful until you have further discussion with your Dr. about it.

01-31-2005, 07:04 AM

Weird, isnt' it. So my swollen throat feeling might take longer to go away than I thought. Are you still on Elmiron? If not, what is working for you right now?


01-31-2005, 07:08 AM
I am not on the Elmiron anymore. I quit when we put 2 and 2 together and figured out what was going on. I contacted the drug company and they did tell me that a small subset of patients allergic to sulfa do have trouble with Elmiron.

I am currently taking Vistaril, I do the diet, use prelief, use Uristat over the counter as needed which is not often and Levsin SL as needed.

01-31-2005, 07:48 AM
Wow...I haven't had any troubles at all with Elmiron..I take 4 pills a day..

01-31-2005, 09:49 AM

How long did it take for you to feel better after being off Elmiron?


02-01-2005, 02:24 AM
I dont know about anyone else but that is a side affect of elmiron so i would suggest you get a hold of your doctor right away.

from webmd:
What are the possible side effects of pentosan polysulfate sodium?
If you experience any of the following serious side effects, stop taking pentosan polysulfate sodium, and seek emergency medical attention or contact your doctor immediately:

an allergic reaction (difficulty breathing; closing of the throat; swelling of the lips, tongue, or face; or hives); or
any prolonged or unexplained bleeding (e.g., nosebleeds, coughing up blood, blood in urine or stool).
Other less serious side effects may be more likely to occur. Continue to take pentosan polysulfate sodium and notify your doctor if you experience

increased bruising (contact doctor if severe);
diarrhea or upset stomach;
hair loss; or

02-01-2005, 02:38 AM
Bunny, when I quit taking it I noticed that within a few days my sores were healing up and then went away. I hope you can get this figured out and be sure to discuss this further with your Dr.

02-01-2005, 02:54 PM
Thanks Jan!! Bunny-it took me about 2 weeks for the swelling to go completely away. Good luck!

02-01-2005, 04:37 PM
I found out after taking Elmiron that I was allergic to this medication. My symptoms were purplish-red raw mouth, burning in chest and throat, sores on corners of mouth and swelling of the tongue and throat. It started about the second week of taking Emliron and I ddin't stop until I had started the second month of medications. It took me sticking my tongue out at my uro for him to finally see what I had been complaining about all along. It wasn't a pleasent experience and took a a few days for all that to clear up when I stopped taking it. My uro also told me to take Benadryl to stop the reaction from the Elmiron. If you are having those symptoms you need to call your doctor and let him/her know right away. Oh and yep I am highly allergic to Sulfa drugs too.

02-02-2005, 07:30 PM
I went last Friday to the doctor for the swollen throat which I started feeling after 2 weeks of Elmiron and continued to take Elmiron for another 2 weeks when I finally saw the doctor. I finish my prednisone 6 day pack tomorrow. I went back to my regular doctor Tuesday morning, she said my throat did not look swollen. But, I was still having chest pains. Sound familiar? This doctor also said that if I was having an allergic reaction it should take 3 days to clear up. My chest feels better after being given Zantac for acid that the doctor said may be causing the chest pains. My throat doesn't feel as bad, but I still feel funny.

I read about stopping Elmiron about the difficulty breathing, but I did not see anything on feeling a swollen throat feeling. I did take Benedryl, but it did not help. I follow up with my doctor again this coming Monday. I will not try to go back on Elmiron after a week like my uro wanted me to, until I get okayed with my primary care doctor. That's the problem seeing several doctors. My primary care doctor asked me why was I given Elmiron since I am allergic to sulfa. She said even the traces of sulfate can cause problems. Again, my uro had called the company and since there were no reports of sulfa allergies, he gave it to me.

Thank you all for responding. I'll keep you posted.


02-03-2005, 01:00 AM
Bunny it took me more than three days for the reaction to clear up even while taking the Benadryl. It had already gotten to the point that I felt like if I take just one more pill of Elmiron I was going to die. Even the Zantac, Pepcid, etc. didn't help with the burning of the throat and chest until I stopped the Elmiron. Hope you feel better real soon and do keep us posted.

02-06-2005, 04:18 PM

Do you remember how long after stopping Elmiron, that you felt a noticeable improvement? I will be 2 weeks this coming Wednesday since I last took Elmiron. Today is Sunday, and I still feel some tightness. Yesterday, I felt horrible. I am not sure if it is really the Elmiron or maybe I am getting adult asthma. Although, the doctor said my lungs sounded clear. I gave myself a breathing treatment yesterday from my son's nebulizer (breathing machine for his asthma), but I really didn't find any improvement, which makes me rethink it is not asthma. It is really frustrating.

Tomorrow, I followup again with the doctor.


02-06-2005, 04:24 PM
It was almost a month after my stopping the Elmiron that I felt a little better. It was a slow process for my mouth and throat to get back to normal and for the sores to heal on the corners of my mouth and the heartburn feeling to go away. Now if I could just get my gremlin to behave I think my life would be just about perfect:)

:grouphug: hope you start to feel better soon, I know just how horrid you do feel.

02-06-2005, 04:42 PM

I am on Zantac right now that the primary care doctor gave me Tuesday of last week. I forgot, how long had you been on Elmiron before stopping it? Golly, a whole month before feeling better. If it isn't one thing, it's another. That is how I feel since having bladder pain since Jan. 1994. Before that, it was just frequent urination.

I told my hubby that this website has been wonderful with everyone's topics and responses. He was the one who wanted me to take Elmiron and it may be that I cannot take it at all.


02-06-2005, 04:49 PM

I am on Zantac right now that the primary care doctor gave me Tuesday of last week. I forgot, how long had you been on Elmiron before stopping it? Golly, a whole month before feeling better. If it isn't one thing, it's another. That is how I feel since having bladder pain since Jan. 1994. Before that, it was just frequent urination.

I told my hubby that this website has been wonderful with everyone's topics and responses. He was the one who wanted me to take Elmiron and it may be that I cannot take it at all.


I was taking 100mg three times a day for over 6 weeks before I finally got so bad that I couldn't take anymore and stuck my poor purple-red raw tongue at my uro so he could see what I was talking about.

You are right this board has been one of my salvations to keep me somewhat sane during my diagnoses then denial to myself and finally the acceptance that I have a chronic condition with no cure. Everyone is helpful and well just there for each other when we all need a shoulder to cry on too.

02-07-2005, 10:42 AM
I spoke to my primary care doctor this morning. She said for me to stay on Zantac for another week. If I am still feeling a swollen throat feeling, then she will order an ultrasound of my throat. I think whether or not I feel good, I will want the ultrasound anyways.

On top of IC, I have to go in and get another intervaginal ultrasound to check on my cysts/fibriods whether or not they have enlarged. The gyno said if I was having problems, then something would be done on the cysts. I have no idea whether or not I was having symptoms since the IC pain exists so much.


02-12-2005, 07:15 PM
My update. I has been 2 weeks this past Wednesday, since I have stopped taking Elmiron. For the past two days, I have not felt that swollen throat feeling. I hate to admit it, but I think the Elmiron caused that feeling. The urologist wants me to try Elmiron again to see if I get that same feeling. Wouldn't that be putting myself at risk for a more serious side effect?


02-13-2005, 07:26 AM
Yikes! I'm glad I read this thread. I'm supposed to start Elmiron soon, but I too am allergic to sulpha drugs, and have been since childhood. Even sulfates in eyedrops make my eyes red and inflamed. Recently, I tried switching to Evian bottled water, but found it bothered my bladder. When I looked at the label, I noticed it has dissolved sulfates. When I had allergy testing as a young person, I remember the doctor saying that I reacted to many of the compounds found in beers and wines, so he advised me not to drink them -- aren't those compounds sulfites? (What's the difference between sulpha, sulfates and sulfites?)

The doctor is checking with the Elmiron company about sulpha allergies - I hope they give a complete answer.

02-14-2005, 11:31 AM

My uro called the Elmiron company too. From replies to my thread, some have said it can take up to a month for relief of the swollen throat feeling. It has been almost 3 weeks since I stopped taking Elmiron. I feel much better but still have some swollen throat feeling. I don't know the difference between sulfites and sulfate. Please be careful taking Elmiron and be sure to be more aware of possible allergies.


01-04-2006, 10:37 PM
For those of you with sulfa allergies what are your reactions to it? I got gushing nosebleeds when I was a child and my doctor told my mom that I am allergic to sulfa.

Does this necessarily mean I would never be able to take Elmiron?



01-06-2006, 10:08 AM
I didn't have a sore throat or swelling in my throat, but I definetely experienced shortness of breath like I couldn't take in a full breath a couple months after beginning Elmiron which was in March 05. I was told by the psychiatrist that it was "mini-anxiety attacks". It does still happen every once in a while, but not as severely as it did back then. I was also wondering if anyone has experienced oily hair with Elmiron? This started about 3 weeks ago. Thanks! Deb

01-10-2006, 08:39 PM
I am going to print out this thread so my family realizes I am not a neurotic, hypochondriac nut!

I was on Elmiron for seven days and thought I was having an allergic reaction to something I ate because suddenly I could barely swallow, felt like I couldn't clear my throat, and had difficulty breathing deeply. I didn't connect it to the Elmiron. After seven days I went to my doctor and he decided I had allergy-induced asthma and gave me Singulair and an inhaler. I took it for five days and seemed to have some help. I went out of town and managed to not take Elmiron for four days and felt really good -- thought it was the Singulair. When I came home I got back on the Elmiron and suddenly in four days I had the same throat symptoms. This time I got antibiotics, a prescription nosespray and a sinus CAT scan (yes, doctor is obsessive) but they didn't do anything different. But I started thinking about how I got better off of the Elmiron and did research on the 'net. Finally found info about rare side effects of sore throat and rhinitus. I stopped taking it again to see if it would clear up and I find myself getting better quickly.

After reading this thread, this is totally my experience. And I am also allergic to sulfa drugs. This is bad news because I wanted Elmiron to be my miracle as I've so diligently been pursuing natural healing since my IC reared its ugly head again 3/04.

Has anyone with Sulfa allergies found that they adjusted after a while or did everyone have to stop? Geez, where do we go from here?

Laura D., Florida

01-10-2006, 08:59 PM
Hi Laura,
I wrote to you on the IC puzzle board so I won't repeat myself. I just wanted to ass that I'm really sorry that you are going through this. I hope that you will be able to take it, and if not, you will find something else that will work just as well.
Love, Emily

01-11-2006, 05:33 AM

Is sulfa the same as sulphate? Would a person who is allergic to sulfa antibiotics also be allergic to dietary supplements containing sulfate? What are the signs and symptoms of sulfa allergy?
Jerry / Ohio


Sulfa isn't the same as sulfate. Sulfa is short for sulfamethoxazole. Some people are allergic to sulfa antibiotics such as sulfamethoxazole, which is found in the combination antibiotics Bactrim and Septra. Sulfate, also spelled sulphate, is a chemical term that identifies specific salts containing sulfur. Sulfur is a mineral that's found naturally in animal protein (including meat, poultry, fish and eggs), dried beans and other vegetables. Sulfa antibiotics don't contain sulfates.

For these reasons, people who are allergic to sulfa antibiotics wouldn't be allergic to dietary supplements containing sulfates. The most common allergic reaction to sulfa drugs is a skin rash. There's no reliable test for allergy to sulfa antibiotics. A doctor may make a diagnosis of sulfa allergy based on the signs and symptoms.

from: http://www.ohiohealth.com/healthref...m?category=7025

I am allergic to sulfa and have been on Elmiron for over 4 years now with no problems. It may be that some people are allergic or reacting to sulfates in Elmiron --- but that isn't the same as sulfa.

So, anyone out there allergic to sulfa --- don't automatically rule out Elmiron b/c I know a lot of us who are allergic to sulfa and do fine on Elmiron. :)

01-14-2006, 05:09 PM
OK, so I thought (and still think) it was the Elmiron that gave me the throat symptoms. However, symptoms went away about three days after I stopped taking it again. But, three days after that they came back again.

Do you think it might still be messing with me and not be quite out of my system yet? Or, do I need to go back to the drawing board to figure out what I am allergic too?


Laura in Florida