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Old 06-19-2007, 08:47 PM   #1
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Alternative treatment for IC? Just diagnosed...

Hello,
I was just diagnosed with IC. I have been searching for an alternative treatment to the Elmiron. It is going to cost me $700+ for 90 days. I found a link to a woman who is selling an e-book with the claim of a natural cure. Has anyone read it? Her name is Marie Goodwin I think.
Thanks,
wietelcutt

 
Old 06-20-2007, 12:58 AM   #2
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Re: Alternative treatment for IC? Just diagnosed...

I am so very sorry to hear about your recent d/x of IC. Yes, Elmiron can be very expensive without insurance that covers prescriptions. There is currently no generic for it, however there are other meds that do similar things. The primary job of Elmiron is to coat the bladder. Many ICers have had success with Cytotec. It is also a r/x med, but I am pretty sure it is available in a generic form. It is usually r/xed for ulcers, since it helps restore the mucousal lining in the stomach. It is also an ingrediant in Arthetec, along with an NSAID. Arthretec is typically r/xed for arthrtitis, and the Cytotec in it helps lubricate the joints. Research has shown it to also help coat the lining of the bladder in much the same way that it does the stomach and the lining of joints. However, the downside is that it has several side effects and not all patients can tolerate it. If might be worth a try, if Elmiron is too expensive. However, before asking your Dr. to let you try it, be sure to do some research on it, so you will be informed. (It's use among IC patients is still pretty new, and not all Drs. will be up on it.) So, it would be a good idea to do some research on it, print it out, and take it with you to your next appt. There is one MAJOR thing to consider, Cytotec will probobly not be r/xed to you if you are still fertile, (even if you are on the pill or use another form of Birth control), b/c it can (and usually does) cause miscarriage if taken while pregnant.

If you are still fertile and cant take Cytotec, another option for you would be talking to your Uro about doing home instillations of heparin. Many ICers do them, (including myself.) They are called rescue instillations, and help alot with pain too. I generally do them a few times a week, but often daily when needed. Mine contain Lidocaine (a numbing agent that helps with pain), and Sodium Bicarbonate (an acid neutralizer), and Heparin (to coat the bladder and help heal the lining.) Though I have prescription coverage, my insurance company wouldnt pay for the instills. (They only pay for injectables for Diabetic patients. GRRR!!) However, they cost me about $3 per instill or roughly $90 a month.

Anyway, I self cath using a small cathater, (the size is 5 French). I mix the meds myself and instill them into my bladder at home. I numb my urethra first with a topical 2% Lidocaine jelly. I also use it to lube the cath. I get immediate relief from the pain, and the Heparin helps heal the lining of my bladder and coats it. It also helps me with the urgency and frequency. This might be a solution for you as well.

Regarding the book, I am sorry to say that I have heard of it, and no, it isnt a legit cure. There is no cure for IC, natural or otherwise. I can tell you that before I came to this site a week or so ago, I moderated at an IC site with over 30,000 members. We had people post about faux "cures" all the time, asking questions, thinking they'd finally found the answer to end their suffering and ours too. However, none were legit. Believe me, if there was a cure, we would know about it. I personally have spent numerous years researching IC. We know more about it all the time, and are constantly finding new things to help with the symptoms. Many top clinicians and researcers around the world are frantically searching for a cure. I am confident that one day, there will actually be one. However, the book you asked about does not contain it.

If you want a legit book to read about IC with some concrete things you can try now, then I recommend "The IC Survival Guide" by Dr. Robert Moldwin. He is a Urologist at Long Island Jewish Medical Center in NYC. He is a renouned expert in IC. The book is a wonderful resource for a newly d/xed patient. You can usually find used copies on Amazon for around $3 or $4. It will be the best $4 you can invest in treating your illness.

There are many meds that can help you, and a good Uro can steer you towards the right ones for you. I would advise you to let him/her know that you dont have r/x coverage so they can steer you towards meds that are within your budget. A good one to start with would be Elavil. It is an antidepressant, but it also helps some with pain, urgency, and frequency. Also, a r/x of Pyridum or Urelle would be a good thing to have. They also help with urgency and frequency. Both Elavil and Pyridium are very inexpensive too!

There are tons of meds and treatments out there. I hope you find a combo that works for you and gives you relief. If you have any questions, feel free to ask. I will help you all I can.

Meanwhile, the single most important thing you can do for yourself is to start the IC Diet if you havent done so already. I dont think we are allowed to give websites here, but you can find it easily by Googling it. Dont give up if you dont see results right away. It can take a few months to clean out your system and for the IC Diet to really start helping. (Though most notice improvment within the first few weeks.)

I wish you the very best of luck and hope you start feeling better soon!

Hugs,
Amy

 
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Old 06-20-2007, 01:25 AM   #3
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Re: Alternative treatment for IC? Just diagnosed...

One more thing I forgot to mention....until you get back to the Dr. and get on some r/x meds to help, there are a few things you can get at a drugstore to help you now. First, you can try OTC antihistimines, like Benedryl or the generic version your local drugstrore carries. Take it at bedtime, since it will cause drowsiness. Many Uros r/x antihistimines b/c the biopsies of most IC patients reveal mast cells. Mast cells are not normally present in bladders of healthy patients w/o IC. The mast cells set off the inflammatory process and the irritated bladder responds with urgency and frequency, and in some patients an itching feeling in the bladder. Other patients report bladder pain. The antihistimines calm down the freq/urg and itching feeling of many patients. Also, since most antihistimines cause drowsiness, it will help you fall asleep, (which can sometimes be a problem when the freq/urg are keeping you awake. It doesnt work for all IC patients, but then there isnt ANYTHING that helps all patients. We are all so different. But, it is worth a shot!

The other thing you can try is AZO Standard. It is an OTC med that turns your urine blue. It is chemically similar to r/x Urelle. It helps with urgency, frequency and burning. Again, it doesnt work for everyone, but is definately worth a try until you get back to the Uro.

Another thing to try is antacids. A good one to take with meals is Prelief. It is a favorite among ICers b/c it helps balance the PH in our urine. But, most any kind of antacids will do.

Another trick to try if you are flaring and you know it is caused by eating or drinking something acidic, is to disolve a couple of teaspoons of baking soda into a glass of water and drink it all. (Yes, it tastes nasty! It is pretty disgusting, but it works!) It can definately save your butt if you have consumed a no-no and are suffering!

Do NOT drink cranberry juice, no matter what well intentioned friends may tell you! It is an acid bomb for an IC patient and can send you into the flare of all flares! Caffine is also the devil for ICers. From now on, water is your best friend.

I cant emphasize the IC Diet enough. If you are already on it and have been cheating, even a little, it wont work. You have to be completely committed to it for it to help. But, the payoff is big if you stick to it!

I truly hope you get some help soon. I feel really bad for you and know what it is like to suffer with this. But, there IS help out there! Dont give up hope!

Hoping you feel better soon!

Hugs,
Amy

 
Old 06-20-2007, 07:25 PM   #4
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Re: Alternative treatment for IC? Just diagnosed...

I absolutely have to agree with Amy on this. Anyone claiming to have "The Cure" for IC, can't be trusted, because there is as yet no cure for IC. But there are a lot of treatments available.

Elmiron is very expensive as you said, but there are some alternatives. I am having good luck with a product called CystaQ (a quercetin blend) and with freeze-dried aloe vera casules. These also help to coat the bladder.

I am so sorry that you have IC, but I know that a good outcome is possible and I will hope for that, for you. Good luck.
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Je vous souhaite de la bonne santée et tout ce qu'il y a de bon dans la vie.
(Wishing you good health and all the best out of life.)

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Old 06-26-2007, 08:58 AM   #5
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Re: Alternative treatment for IC? Just diagnosed...

Thank you for your reply. I thought I had my setting set to receive a notice when someone replied. I was still waiting :>) I am glad that I checked. I have a good Doctor but I still feel like there is more info for me. I am hurting in my lower back, is that normal? Are flare-ups triggered by hormal shifts? I am suppose to have a cycle and it doesn't want to come. Can I find these answers in the book you recommended? Thank you for being so kind to me.
wietelcutt

 
Old 06-27-2007, 03:45 AM   #6
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Re: Alternative treatment for IC? Just diagnosed...

You are very welcome. I am glad that you came back! To answer your questions, yes, lower back pain IS very common with IC. And yes, many ICers have noticed that hormones play a large part in things. I had to have a total hysterectomy 2 yrs ago at age 33, (due to severe endometriois), but prior to that, I always went into an IC flare right before my period. It is also common for this to happen during ovulation. I have heard many other ICers say the same thing. Also, the severity of the lower back pain is much worse during these times.

Yes, all of this is talked about in the book I told you about. I have read many books on IC, and while there are a few others I would recommend, that one is the best one in my opinion b/c it is so comprehensive. In it, he covers the possible causes of IC (there is no known cause), but he discusses the popular theories. He also talks about the diagonis process, the tests they do (and how they do them, as well as what they show the Drs.). He also talks about the IC Diet, and the various meds and treatments for IC. He talks about R/X meds and discusses the alternative ones and tells which ones are worth trying and which are just hype. He also talks about the many conditions that frequently co-exist with IC such as Vulvadynia, Vulvar Vestivbulitits, Endometriosis, Lupus, Allergies, Multiple Chemical Sensitivities, auto-immune disorders, IBS, GERD, Chronic Fatiuge Syndrome, Fibromyalgia, and Depression/Anxiety. It seems that there is a much higher incidence of these conditions among IC patients than in the general population. Though some ICers "only" have IC, many have one or more of those other conditions too. (Unfortunately, I am one of the unlucky ones who have several of them.) But, the good news is that if you are also unlucky enough to have one or more of the co-existing conditons too, many of the meds that treat IC are also used to treat several of those. So, that is a good thing!

I am so glad that Douler wrote and told you about the freeze dried Aloe vera capsules and the Cysta-Q. She is correct that there are lots of ICers who use those alternatives when they cant take Elmiron. Lots of ICers have success with them. If you cant take Elmiron, it is certainly worth a try, as they are legit options that have had proven results for many patients. (I havent tried them, since I use the Heparin, but I do know several ICers that have had good luck with them.) I wish I had thought to tell you about those, but I sometimes forget about the stuff I havent personally tried. That's why I am so glad that someone wrote to tell you about them.

Again, I really hope that all this helps you and you start feeling better soon. I know things are rough right now, and though it might take a little while to strike upon the right combo of meds for you, you will get there. You have gotten thru the hard part.....getting diagnosed. (It takes some poor ICers 7-8 YEARS just to get diagnosed!) So, now that you have that part behind you, you should be feeling alot better very soon. Meanwhile, if you think of anything else we can help you with, please write again.

Hugs,
Amy

 
Old 06-27-2007, 09:12 PM   #7
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Re: Alternative treatment for IC? Just diagnosed...

Well,
I guess my very large email was dumped..I am sorry. I guess my post was booted because I had copied a list of suppliments that I found from a website. I mentioned in my earlier e-mail that I have ordered some books but while I waited I had a question. I found that offers an IC support pak. I was going to ask everyone if they had found any releif from these particular supplements. They are: Quercitin w/bromelain, Colostrum, Grapeseed extract, Serrapeptase enzymes, alkaline drops, cod liver oil, plant sterols, silver and marshmallow root tea. There are several testimonies. I guess I am searching for any hope. I did try the baking soda water trick and I was amazed at the relief I had within 30 minutes or so, I gagged but I did get it down . Thank you for that info.

I seem to have the most problems at ovulation. My Urologist referred me to a GYN that he trusts. Evidently the one I went to the first of June did not inform me that my uterus is mis-shaped and that I have a large cyst on my ovary. He was angry that she didn't even do a pelvic or any other tests to see if I was infected or anything, she gave me BC pills (because I was bleeding) and sent me on my way! Anyway, my Urologist gave me a name of someone. I guess I will make that appointment for next month sometime.

I posted on the Auto Immune board to see if anyone knows of any good books about AI disorders. I have Graves disease as well. We got it under control about a year ago. It seems that IC and AI goes together.

Thanks again for all of your help.
wietelcutt

 
Old 06-29-2007, 12:05 AM   #8
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Ihurttoo HB User
Re: Alternative treatment for IC? Just diagnosed...

Sorry I didnt see your post before it was deleted. I have heard of the supplements you mentioned. The most common is the marshmallow root tea. I have heard some ICers have success with it, (along with other meds.) As for the others, while I have heard of them, I dont personally know anyone that had success with them. I go to several boards where there are lots of ICers and run a local support group for ICers, so I am in contact with alot of ICers, but I dont really know anyone who uses any of the ones you mentioned besides the marshmallow root tea. I am not telling you not to try it, just that I havent and dont know anyone that takes them, so be leary. I would definately do some research on them before you go out and spend alot of money on them. There are so many people out there with false claims that are just trying to make a quick buck off of people who are desparate for relief. (Again, I am not saying that these aren't legit or dont work, just to be careful.)

Sorry to hear you have GRaves Disease in addition to IC. I also have an autoimmune disorder....Lupus. So I definately know what it is like to have to constantly battle with your health. I havent found any good books yet on Autoimmune Disorders, but if I do come across one, I will dig up this post and post it for you. I have alot to learn in this area and definately need to do some reading on them myself.

I hope the new Gyn works out better than that other one! WOW! I cant believe she didnt even examine you!!! No wonder your Uro hit the roof! That was totally irresponsible on her part! I am so glad you have a caring Uro to help you get in to see a new one soon. Let me know how things turn out.

Hugs,
Amy

Last edited by moderator2; 06-29-2007 at 05:20 AM. Reason: Please do not post websites except as described in the posting policy section titled "How to share information".

 
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