Singulair is working for me (so far.) - Interstitial Cystitis Network Support Forum

ICLori · 11-20-2004, 08:41 AM

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 · 11-20-2004, 08:45 AM

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 · 11-20-2004, 08:47 AM

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 · 11-20-2004, 12:25 PM

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 · 11-20-2004, 07:24 PM

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 · 11-21-2004, 10:22 AM

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 · 11-22-2004, 01:44 PM

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!!

Indy · 11-22-2004, 03:02 PM

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

Thanks,
Indy

ICLori · 11-22-2004, 03:16 PM

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 · 11-22-2004, 03:17 PM

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 · 11-22-2004, 06:06 PM

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 · 11-22-2004, 07:09 PM

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 · 11-23-2004, 07:04 AM

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 · 11-23-2004, 07:26 AM

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 · 11-23-2004, 09:38 AM

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