Singulair for EoE

Alexs_Mom
  • By Alexs_Mom · September 13, 2012 at 9:40 am · 17 replies
  • In Eosinophilic Esophagitis (EoE)
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I have been doing some research on the internet and I came upon a website that said Singulair may be helpful in the treatment of EoE. I was just wondering if anyone has tried this and what your experience was.

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17 replies   

EOEMom1

sorry haven't my son uses flovent...as long as it works we will stick with it.

vdel

I have only ever heard doctors at the APFED conferences say that it isn't effective for EoE.

In the updated consensus report, here is the section that addresses drug therapies other than swallowed steroids. There is nothing else about other meds.

"Cromolyn sodium, leukotriene receptor antagonists, biologics, and other therapies
Update of 2007 recommendations
No additional information has been reported with regard to the use of cromolyn sodium or leukotriene receptor antagonists in patients with EoE. Cromolyn sodium has no apparent therapeutic benefit for patients with EoE. Leukotriene receptor antagonists might induce symptomatic relief when given at high dosages; its use has no demonstrable effect on esophageal eosinophilia.141 In a single study anti–TNF-α had no benefit in patients with EoE.142 A few studies in a small number of patients have been published using anti–IL-5. The studies demonstrated a significant decrease in esophageal eosinophil numbers and improvement in a few parameters of esophageal remodeling; however, the clinical response was variable.40, 143
Committee clinical recommendations
Treatment of EoE with cromolyn sodium, leukotriene receptor antagonists, and immunosuppressive agents (azathioprine or 6-mercaptopurine) for the treatment of EoE is not recommended. The lack of combined clinical and histologic benefit and potential side effects currently outweigh any potential benefit. Biologic agents await further clinical studies and are not recommended for routine use at the present time.144 Several additional studies on anti–IL-5 therapy are pending.
Committee future recommendations
Other potential agents for the treatment of EoE should be investigated. Potential future treatments include immunosuppressive agents and the use of mAbs, such as anti–IL-5, anti–IL-13, and anti-eotaxin. In addition, the study of serum biochemical markers might aid in the development of potential future therapies."

PattiDM

My daughter has been on Singular for 4 years, it helps with her stomach pain and itchiness - I assume it is helping with mast cell issues instead of EoE. Some people react badly to Singular so if you do try it, just keep in mind it can have side effects.

Emilierose

My Emilie has been on singular for over 5 years, I have seen NO difference in her EOS symptoms...With that, they just switched us over to generic singular and she cannot tolerate the taste of the chewable and spit it out and proceded to do what she does best, vomit / her EOS reaction........Now I have an udult dosage in oral generic and have to cut it in half so that she can take orrally instead of a chewable! It does help her stuffy nose allergys, and that is about it......

CassieK

My 2 year old son was on Singulair briefly. However, we couldn't tell if it was helping or not so his doc took him off of it. Is the generic form out yet? It is so expensive, even with insurance!

Alexs_Mom

Thanks everybody. Sounds like to me that it doesn't work that good for EoE. My son has Flovent and I am giving him that right now.

BGrateful

Just wondering, Is the flovent he takes inhaled or swallowed? My son's symptoms are getting worse (I'm thinking it's because of the fall allergy season) & I'm trying to find out what other people are doing...thanks!

Alexs_Mom
  • By Alexs_Mom
  • Reply 3403950 · In reply to 3401884 by BGrateful
  • September 25, 2012 at 6:15 am
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He swallows it. He says it burns and he doesn't like it. I just wonder how safe that it really is. They say it is safe but it is a steroid.

MikeEoE

Pulmicort Slurry (Oral Viscous Budesonide) Has given me clear scopes. I use it twice per day. Apperently very little is actually absorbed into the body and supposedly this limits steroid side effects. Mike

CaraEoEMom

Our daughter did the liquid budesonide mixed w/Splenda slurry but wasn't sure if it made a difference in her symptoms. The doctors took her off it when we started food trials so it wouldn't interfere with the food results

MikeEoE

The concern I had with the splenda slurry was the dextrose ingredient in the splenda. So, I have mine compounded at the compounding pharmacy with neocate elemental formula powder and nothing else in there. I simply open up the capsule and add a very small amount of water into a small glass cup to make the slurry and swallow this.

The pharmacist uses Budesonide powder instead of the respules. Mike

EOEMom1

the flovent(my son is on 110) is puffed into the mouth and swallowed the dr's at childrens hosp answered our concerns about steroids with:

the amount of steroid in 2 puffs is miniscule compared to the amount of actual steroid swallowed.... and very little/if any of it gets in to their system it is just coating the esophagus.

it comes down to pros and cons

my sons eosinophil count went from 120 per sample to 2 per sample with the flovent I'll take the steroid risk of this anyday over seeing my son projectile vomit twice a week for several hours and then be underweight and undernourished be cause he can't keep anything down or feels too nauseus to eat.

but thats just my take on it all ;-)

Alexs_Mom

Did you do the food elimination diet or just use the Flovent? The GI doctor told me that if he uses the Flovent he wouldn't have to go on a diet.

BEEMother
  • By BEEMother
  • Reply 3411140 · In reply to 3409381 by MikeEoE
  • September 27, 2012 at 2:12 pm
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thanks. This has been mentioned to us since flovent isn't working but I was concerned about the splenda ingredients also. My pharmacist does compounding too. He has been making our tylenol without additives.
Thanks

Barryandrachel

I use the Flovent as well and I feel it is what is making the biggest impact on my eoe issues. I have had it for about five years now and I have seen two specialists, plus my primary doctor HAS it so we compare noted on what works best for us. I also take something for heartburn every other day which is also helping. My biggest problem that Flovent has solved is food getting stuck in my throat.

JoanieF

when my son was first diagnosed almost 5 yrs ago, they tried singulair but it did not really do anything for him, he is now on flovent

JoanieF
  • By JoanieF
  • Reply 3446996 · In reply to 3401884 by BGrateful
  • October 10, 2012 at 12:02 pm
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my son is on flovent and he swallows 2 puffs twice daily, started out doing 1 puff twice daily, then the last scope and biopsies he had done were worse, so they increased his dosage, he goes back to see the GI the end of this month, and he is due for another scope in January to see if it is worse or better

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