Singulair is working for me (so far.)

[ICLori]

You guys know how I've been trying antibiotics, and they help, but I still have some discomfort between voids and am getting up 5-6 times per night anyway?

Well, I have no idea if this good effect will continue (I don't trust myself anymore, too inclined to have a placebo response) or if I will develop a bad reaction to it, but...so far Singulair rocks.

My bladder feels like a normal bladder. For the first time in about 8 months I think, I woke up this morning and my bladder wasn't doing it's usual maddening stuff that it does (empty me now, even though I don't have any urine at all!). I mean, I did a normal void like any normal person (and lots of urine too, not a tiny void like I usually do!) and then it was a couple hours before I felt the need to void again. I was able to go to a movie today and watch it and I only had to get up once!

So...antibiotics are helping some....Singulair is helping the rest of the way. I'm glad I tried Singulair. It's still kind of new/experimental, but there was a study done in Denmark I guess that indicated it helped a good percentage of IC'ers with urgency/frequency. It was only one small study, so who knows what will become of the final results? It might end up being refuted, etc. But so far Singulair seems to be doing good things for my bladder so I sure am glad.

Has anyone else tried this, and if so, how were your results? Just wondering.

Blessings, Lori

[ICLori]

P.S. This was all I could find about Singulair - I asked my doc to prescribe it based on this blurb.

Anyone else know more about it, about the study with IC patients etc.?

Montelukast (e.g. Singulair®), a medication used to treat asthma, inhibits the release of leukotrienes from mast cells and other cell types and thereby prevents inflammation. A Danish study showed that treatment of IC patients with a daily dose of montelukast showed a significant improvement in urinary frequency and pain. However, more clinical trials with a larger number of patients are needed for its mechanism to be better understood in IC.

[ICLori]

P.P.S. Okay I just found this...

Urol. 2001 Nov;166(5):1734-7. Related Articles, Links


The cysteinyl leukotriene D4 receptor antagonist montelukast for the treatment of interstitial cystitis.

Bouchelouche K, Nordling J, Hald T, Bouchelouche P.

Department of Urology, Herlev Hospital, University of Copenhagen, Herlev, Denmark.

PURPOSE: The presence of leukotriene D4 receptors in human detrusor myocytes and increased urinary leukotriene E4 in patients with interstitial cystitis and detrusor mastocytosis imply a role for cysteinyl containing leukotrienes as proinflammatory mediators in this disease. We examined the efficacy of the cysteinyl leukotriene 1 receptor antagonist montelukast for treating patients with interstitial cystitis and detrusor mastocytosis. MATERIALS AND METHODS: Ten women in whom interstitial cystitis was diagnosed according to National Institute of Diabetes and Digestive and Kidney Diseases criteria and who also had detrusor mastocytosis with a minimum of 28 mast cells per mm.2 muscle tissue were included in this study. Patients received a single dose of montelukast daily for 3 months. The efficacy of treatment was determined by 24-hour urinary frequency, nocturia and pain using visual analog scales. RESULTS: After 1 month of montelukast treatment there was a statistically significant decrease in 24-hour urinary frequency, nocturia and pain which persisted during the 3 months of treatment. After 3 months 24-hour urinary frequency had decreased from 17.4 to 12 voidings (p = 0.009), nocturia had decreased from 4.5 to 2.8 (p = 0.019) and pain had decreased from 46.8 to 19.6 mm. on a visual analog scale (p = 0.006). No side effects were observed during treatment. CONCLUSIONS: Montelukast treatment resulted in significant improvement in urinary frequency and pain. Its efficacy for decreasing urinary frequency and pain imply a role of leukotriene receptor antagonists for managing interstitial cystitis but further placebo controlled clinical studies are needed.

PMID: 11586212 [PubMed - indexed for MEDLINE]

[daydreamer]

I'm glad to hear it's working well for you. I've been taking it for tha past three years for asthma, it works well for that. I don't know what it would be like for my bladder if I didn't take it though.

[Indy]

Hi. I just started singulair in addition to the atarax, elavil, klonopin cocktail.

It's been a week but I'm hoping that I'm not imagining feeling slightly better. It makes sense because it blocks the secretion of histamines earlier in the cycle than the antihistamines.

I think this along with pelvic floor therapy and aloe vera is my new experiement.

I am trying so hard not to take pain killers!

[ICLori]

Hi, Indy, I understand completely, I've had to take Percocet often just to get a few hours of sleep and I hate it. I hate asking for it, mostly. It's not that I'm afraid of the drug because I think it's quite safe for occasional use and when not taken in larger than normal doses, but I just hate asking doctors for it because I am sure they think I'm a drug addict. So I look very hard for anything else that can be a solution, even trying crazy things.

Singulair was one of those crazy things I didn't know if it would work or not, but there was that one promising study that led me to think, well, might as well try it.

I think what I'm learning with my IC - might be different for other people - is that there might not be any one particular thing that takes 100% of it away. I find that the antibiotics are helping me a lot. Singulair is helping me some. Naproxyn Sodium (Aleve) is helping me some. Being careful about my diet is helping me some. Taking Prelief or other calcium is helping me some. Heat helps me some. Elmiron and Atarax might be helping me some but I'm not 100% sure.

If this combination ends up not being enough, in the future, then I will have to start looking at more stuff, like maybe a bion or Interstim or who knows what.

Blessings, Lori

[1tuffcookie]

I started taking Singulair earlier this year for my bladder. Why? Because I read about it at the Interstitial Cystitis Association's website in their Treatment Guidelines. I also intermittently have problems with my asthma, so it seemed a good choice. Right away I noticed the frequency and urgency were reduced. Then in the late afternoon, they would come back. I tried taking a second pill at that time, and it worked wonders. So my doc wrote the insurance company to get them to approve it. They had initially denied it, because the dose is one pill daily. I was thrilled when they changed their minds!! :woohoo:

[Indy]

May I ask what dosage you are on and if you have had any side effects?

Thanks,
Indy

[ICLori]

Hi, Indy, I am on 10mg once per day. The only side effect I have noticed is that my sinuses seem very clear for once instead of sort of clogged-feeling, and the first dose left me feeling a bit "up" as if I'd had a cup of coffee but subsequent doses haven't done that so maybe I was imagining it. No bad side effects for me.

Blessings, Lori

[ICLori]

P.S. I forgot to say, I have had periodic problems with asthma, too. Only when I get a cold or something - if something settles into my chest, it always ends up giving me a big asthma attack...

[Indy]

Hi Lori.

Are you taking the 10 mg. 5mg. at a time? I am taking 10 at night only and wondering if I should split up the dose.

[ICLori]

Hi, Indy, nope, just taking 10mg once a day. Isn't it working for you taking it once a day...or are you having bad side effects?

Blessings, Lori

[bunnykinb]

Hello everyone. I'm taking Benedryl at night, 25 mg for my sinuses which my nose stills seems stuffy. However, I did notice a significant improvement in my urethra pain. I don't know if it is just a coincidence and wonder if the effect will wear out. But, Lori said it makes her sinuses clear taking Singular as well as helping IC. Sounds great, clear sinuses as well as IC pain relief. I'll have to remember to tell my uro on this.

Lori,

My husband and 4 yr old son both take Singular daily for their asthma. Both tend to get asthma attacks during the cold weather. I do hope one day there will be a better way to prevent asthma all together.

Take care everyone and hope to a painless Thanksgiving.

bunnykinb

[1tuffcookie]

I take 10 mg at breakfast, then another 10 mg late afternoon. I haven't noticed any side effects at all, but my congestion seems better on Singulair, too. Indy, before Elmiron was readily available, I took aloe vera. A urologist told me it's chemically the same as Elmiron. It did help my frequency and urgency, with no side effects that I noticed.
Happy Thanksgiving!

[ICLori]

Hi, Bunny, if your pain is helped by antihistamines, that might indicate some allergic component, and it might be helpful to try Singulair as well. Singulair blocks a different allergy-chemical from antihistamines. It's an antilukotreine, LOL! The two together (my doc told me to stay on Atarax so I'm assuming your doc will tell you to keep on Benadryl etc.) might give you better relief than either one alone.

Blessings, hope you feel better soon,
Lori

[1tuffcookie]

Bunny,

ICLori is correct, and I agree with her. But there's something about Benadryl I wanted to make sure you know about in case you are prone to sinus infections, like me. I have to be careful not to take too much Benadryl too often. The problem is that it makes the nasal secretions thicker. (Actually, most antihistamines do, but Benadryl does even more.) So if I take too much, the stuff gets too thick and then gets trapped in there. Then it's like putting out a :welcome: to every bacteria or virus that happens by!

Take care,
Andrea

[bunnykinb]

Andrea,

Oh great, I was happy to be relieved of urethra pain hoping it had related to the Benedryl, but my sinuses hadn't cleared up at all. I'm stressed again. Today has been the best day I have felt all year from IC pain. You should put that message out on the Benedryl thread at this site for everyone else to know.

Do all allergy medications increase secretion such as Allergra, Claritan, Entex LA?

bunnykinb

[bunnykinb]

Andrea,

Did you read about increase secretions someplace or did a doctor tell you this?

bunnykinb

[1tuffcookie]

Bunny,

Oh, no! I'm sorry! :bonk: I don't want you to stress--it might set your bladder off. It wasn't increased secretions a doc told me about. He said that antihistamines make the secretions thicker. It makes sense to me, because they do dry you out. You mentioned Entex LA, and I take that. I understood it's a decongestant, not an antihistamine. So it actually helps get the secretions out. I take Allegra, too. It's just that by the time I go to bed, sometimes everything's worn off, so I sometimes need a Benadryl. It's only when I do it too many days in a row, or take 2 instead of one that I might get an infection. But that's ME, and everybody's so different in how they handle meds. Plus, most of us ICers take more than one med, so they have interactions with each other. I think we have to weigh the benefits and the negatives. If I were you, I wouldn't bag the Benadryl yet. Maybe talk to your doc if you're concerned? But the reason I wouldn't ditch it if I were you is because you finally got a good day with your bladder. That's priceless! Maybe if you take a decongestant, it will keep the secretions from getting too thick and setting up house in your sinuses. I hope this helped to make you feel a little better. Take care, and I hope you have more painfree days.

[jrowley]

Hey girls the reason singulair is working for you is probably because you have allergies that you don't know about and or asthma. Allergies seem to be one of the major causes of ic flares. I would think about having yourself checked to see what your allergic to as it may just be a food allergy and if it is then you eliminate that food and might not have to take the drug. And if it is asthma you have then more than likely you have allergies (at least my sister did when she was d'nsd with asthma). So basically if your treated for your allergies and or asthma on a regular basis your ic will get better.

[bunnykinb]

Andrea,

You know, I thought Benedryl and Allergra were the same. I didn't know antihistamines and decongestants were different. And, buying Benedryl was cheaper than paying for my prescription. I do have a refill on Allergra D. I woke up this morning feeling a slight burning in the urethra again. UGH UGH UGH. I thought it was great being pain free for almost 2 1/2 weeks. I didn't eat anything different and I don't understand what happened. This IC is sure a pain. I have a list of questions for the uro on Dec. 2. He said I only have mild IC and out of his 150 patients only 3 haven't responded and I'm one of the three.

Well, Have a Happy Thanksgiving!

bunnykinb

Jan,

After just being diagnosed with IC last month, the uro put you on Elmiron really fast. I haven't gone on it because I'm worried about a patchy hair loss and my hair already comes out when I brush it daily.

bunnykinb

[bunnykinb]

PS to anyone,

How do you get a picture near your user name? Or, if someone can direct me to it.

Thanks,
bunnykinb

[1tuffcookie]

Jan,
You are SOOOO right about allergies and asthma!!! I have both. I was tested, and it seems like I'm allergic to everything but the kitchen sink--things outside & inside, and yeast. I tried the allergy shots for several years, then the doc and I decided to bag it because they weren't helping. Since then, I've found I'm allergic to more foods. For example, just this year I eliminated dairy products. My husband really noticed that I wasn't blowing my nose as much! But the best of all is that my bladder has been great ever since I've been on Singulair. Woo hoo!!

BUNNY,
A hairdresser told me once that it's normal to lose 150 hairs a day! I believe her. But if you're concerned about that, maybe you could try aloe vera instead? A good uro told me that a.v. is chemically the same as Elmiron, so I took it before Elmiron was readily available. It helped me.

I could be wrong, but I'm pretty sure that Allegra-D has a decongestant in it (hence, the "D" in the name.) I'm sorry your urethra is bothering you again! But try not to lose heart--there are so many treatments available that I really believe you will soon find the one or combo that well help! Yes, IC is a pain! You can do everything right--take care of yourself, eat and drink right-- and still have symptoms. I think it could be because of mast cells (MC). In case you don't know, MC are all over our bodies, including the bladder. IC bladders have more of them, studies show. When they are activated, they explode, dumping at least 40 different nasty substances into our bodies. Two of these substances you've probably heard of--histamine and leukotrienes. So these substances can cause us to have symptoms. The thing is, MANY things can activate the MC, causing them to release the nasty stuff. Examples: stress, being too cold, bacteria, (just 2 little bacteria cells can do it!) estrogen, and certain medications. So perhaps one of these activated MC in your urethra/bladder. Take care, and I hope you have a wonderful Thanksgiving!

[sylvieCT]

Wow! This is really interesting because my main symptom is frequency and I have asthma and allergies. Singular sounds like something I should try. Thanks.

[bunnykinb]

Andrea,

I will ask the uro about Singular. Today really hasn't been good because I have a dull pain you know where. I will have my 4th heparin next week. Right now, I'm doing that monthly. It has definitely helped with my pelvic pain which I haven't had in months. Aloe Vera sounds interesting. Is that available at health food stores?

How long have you been taking Singular? Oh, thanks for the hair comment. Believe me, I was worried on that.

I do pray for my health as well as others who are inflicted with IC. Right now, I just want to cry because I thought I was doing better. Take care all.

bunnykinb

[Indy]

How long does it take to notice the difference if singulair is helping?

[bunnykinb]

Indy,

I hope someone replies soon to your question because I was wondering the same thing. I see my uro this Thursday for another heparin instillation. I wanted to bring up Singular to him.

bunnykinb

[ICLori]

Hi, Indy, I noticed it from the first day.

I had a really bad flare last night/this morning and I have no idea why. I didn't do or eat anything out of the ordinary. Sigh. I guess my bladder is just going to be difficult some days no matter what I do.

Blessings, Lori

[bunnykinb]

Lori,

Oh man, sorry to hear about your flare up. Our bladders aren't very friendly at times. I found a friend from the hyster sister website who introduced me here. She is taking Elmiron, Urocit-K, Elavil and instills. So far, she hasn't had any pain in over a month. I correspond to her frequently. We never know what our bladders will respond to. Sometimes I think that after a while, our bladders get used to something that has helped in the past, then suddenly, we feel we are back to square one.

I hope you are doing better.

bunnykinb