Interstitial Cystitis (IC) Support Group

Interstitial Cystitis (IC) is a urinary bladder disease of unknown cause characterised by pelvic and intense bladder pain, urinary frequency (as often as every 10 minutes), and pain with urination. It is not unusual for patients to experience nocturia and pain with sexual intercourse. IC is also known as painful bladder syndrome (PBS), particularly outside of the USA.

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Aloe Vera capsules help IC...

Just sharing some info on another option besides Elmiron that might interest you.

After recently being diagnosed with IC, after having IC for over 30 yrs now, I opted out of taking Elmiron to instead take aloe vera capsules (2 tabs 3x/day) for my IC problem. They have been helping, without the side effects of Elmiron. My doc was amazed at how much my bladder lining had improved since being on the aloe vera for only 6 weeks. My doc said for me not to take the Elmiron since the aloe vera capsules were doing an even better job and quicker than the Elmiron would have done. She's going to recommend it to her other IC patients as another option. The aloe vera works just like the elmiron in that it repairs the lining and protects it from irritation, just minus the side effects. There are 2 companies who makes these capsules specifically for IC patients, but the one I use because even the actual capsule doesn't irritate the bladder is the company called "Healthy Life Harvest". The capsules are called "aloe vera whole leaf capsules".

Just thought I'd share this info since I'd read where some of you are having trouble with the Elmiron side effects. If anyone else has tried other successful options beside prescription meds for IC, please share!

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Thanks for the post. I just ordered some of these a few days ago. I'm really hoping they work for me. I'm glad to see a testimonal that's not on the companies webpage.
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Question LHG - Since you started taking these capsules, have you noticed a difference in the pain/flare ups? Less pain? Really curious!
Thanks
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Ruth511...here is my update since I posted 2 months ago after being on the aloe product for only 7 weeks...

With IC, I battled chronic pain, urgency, & the inability to empty my bladder completely (urinary retention). I mentioned earlier that after 6 weeks on this product, I noticed a big improvement. Well...after 3 months I felt pretty darn close to normal. The chronic pain I had 24/7 is gone. Yippee! The number of times I "go" during the day seems to be normal now for someone my age which has been a huge improvement, and the most I have to "go" during the night is twice, but usually only once. Again, yippee! And, the retention problem I had is no more. Double Yippee! I'm glad, too, because I was about to have to learn how to use a catheter. Yikes!

The actual name of the product I buy off the website www.healthylifeharvest.com is called
"I.C. Aloe Vera" capsules. The company has now increased it dosage to 700mg. I'm still using the old dosage of 600mg. For the first 3 months, I took 2 capsules 3 times a day. At month 4 I cut back to 2 capsules 2 times a day. In a month I plan on taking only what the bottle directions recommend which is 1 capsule 3 times a day. Along with taking the aloe capsules, I followed the IC diet strictly for 3 months before putting foods/drinks back into my diet. Amazingly I'm able to eat & drink pretty much anything I want...even coffee & chocolate! I do take 2 Prelief tablets with my coffee to neutralize the acid...just in case.

As for flares ups...I have them only around my period, which is basically the urgency problem, but it is way much better than it used to be. And the only time I get even the slightest bit of pain is when I've had lots to drink and have been sitting for a couple of hours holding it because I couldn't get to the restroom. It used to be that as soon as any urine (the tiniest little bit) hit my bladder, I had severe pain and had to relieve myself.

Everyone is different, and this treatment may not work for you but I wanted you to know about this option. And...I had the worse case of IC my doc had seen in her 25 yrs of practice so I was very happy this product worked for me! If you try this product, I hope & pray it works for you as well as it did for me~*

NYbabygirl...funny you mentioned the company's testimonies. Supposedly my testimony is going to be posted on their website some time this month. I hope the aloe works for you!!
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One point I need to make clear is...that if you try the aloe vera leaf capsules, then you must purchase only the ones from the site I mentioned above. The ones you find in health food stores put ingredients in with the aloe that bother your bladder lining, therefore contradicting what the aloe is supposed to be doing. The only aloe product on the market that has only aloe vera leaf (no gel or liquid or any added bothersome ingredients) in its capsules and is designed specifically for IC is the product from the online Healthy Life Harvest store. Lots of ICers make the mistake of thinking any aloe product (capsule, liquid, or gel) will work but that isn't the case.

And of course stick to the IC diet while you are trying to repair your bladder lining or it will take longer for the aloe vera leaf capsules to repair your lining. Slowly put foods & drinks back into your diet one at a time, no sooner than 3 months on the diet. Then whatever bothers your bladder at that point...avoid it big time! To me there is no food or beverage worth the pain.

Best of luck to all of you trying to get your IC under control regardless what method or products you are using~*
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I'm really happy to hear your update. My order came yesterday and I hope I have the same results you have. I especially hope it helps my retention problem, so I was so happy to hear it worked for yours. I am on the verge of self cathing as well, this is my last resort, so I'm keeping my fingers crossed. Thanks again for the helpful info!
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nybabygirl...I'm crossing my fingers it works for you, too! I had great results with it, still am, so it would be great if it helps someone else. There are absolutely no side effects and you can take it on a full or empty stomach. I would double the dosage at first...instead of 1 cap 3x, do 2 caps 3x for the first 3 months. Then cut it back based on how you are doing. XXing my everythings for ya~*
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I am willing to just about try anything. Could you send me the address or if they have a web site. I am tired. When I eas diganoised with this, I was told thathe saw more younger people that older one suffering with this. So I had it in my mind that as I got older that this would start to dissapear, so it has been almost nine years,but just my luck it seems to be getting worse.
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Cookie53, I have the website posted in one of my replies above, but I also sent you a PM with that info. Hope you get some relief from your IC soon~*
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WOW... Glad to hear the Aloe Vera Capsules are working for you!!! I was taking Aloe Vera concentrate Pills plus buying Pure Aloe Vera Juice for over 1 year with no improvement in my IC. It was like torture trying to drink the Aloe Juice and I could barley get the stuff down without throwing up! Want to give up taking the Elmiron after taking this medication for almost 2 years now with no results. UGHHH.. That is so cool the Aloe is working for you!! Good Luck :-)
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Shaundog...yah, the aloe vera juice doesn't work and the only aloe vera leaf capsules that seem to work for IC that has no added irritating ingredients or capsules is the product I've mentioned in my posts. I'm sorry you haven't had any luck with helping your IC. That stinks! If you try this company's aloe capsules, you have to make sure you are not putting other irritating products like the aloe juice or any foods or drinks in your system because it cancels out the benefits of the aloe capsules I've mentioned. Other ICers have also tried other aloe products with no luck either, while some ICers have had great results with the Healthy Harvest product. But like I've said before, everyone is different and what works for one may not work for others.
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I just started Elmiron yesterday. What kind of side effects are we taking about? I gained 10 pounds on Enablex and am concerned that this stupid pill will do the same thing? Thanks. I go back to the doctor in 4 weeks, but I would like to try your suggestion!!!
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Absolutely no side effects at all and can be taken with prescription meds like Elmiron (which my doc approved). And most definitely no weight gain. Lindsay...Did you see that I answered your question about Prelief on the new IC diet post by Ruth511?
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Do you think that taking the Aloe capsules along with Elmiron would be beneficial? I have experienced relief by taking Elmiron so don't want to stop that but was wondering if it may be a benefit to also add the Aloe capsules? Any thoughts on that .....
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I have no experience with combining the 2 products but this is what my doctor told me...She said that it was completely safe to take the Elmiron & aloe capsules together. I never started on the Elmiron because I have a clotting problem and was afraid of getting a bleed while on the Elmiron so I opted for another treatment. When I showed a huge improvement after 6wks on the aloe capsules, my doc told me to not even worry about trying the Elmiron. But she did say that she was going to let her other patients know about the aloe product and let them decide if they wanted to take the aloe with the Elmiron to help speed up their treatment or take just the aloe alone if they were having adverse side effects from the Elmiron.
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Lindsaypsl...were you talking about Elmiron side effects or aloe vera capsule side effects? I was addressing aloe vera capsule side effects. If you are asking about Elmiron side effects, I don't have any experience with that med. You can ask other ICers about it or research the side effects online.