Intersticial cystitis

Discussion in 'Fibromyalgia Main Forum' started by Mareeok, Sep 15, 2005.

  1. Mareeok

    Mareeok New Member

    While I was reading posts last night I came across someone who said they have, among other tings, IC. I don't have IC but I worked for the company that makes the over the counter product Prelief. I don't know if it is allowed on this site to plug a product. If not, please delete it and I will be happy to PM the person. It's just that I am all for help that doesn't give bad side effects. I have Gerd and take no meds for it because I take Prelief. It is calcium that comes from limestone. I worked in Customer Service for AkPharma besides being the receptionist so know all about Prelief and IC. Prelief has been very VERY successful with IC symptoms (also IBS, Gerd, Overactive Bladder, Vulvadinia (sp?) and other stomach and bladder problems. IC patients are able to eat and drink whatever they want with no or very little pain afterwards and many have been able to get off of Nexium and Prylosec. The developer of Prelief never heard of IC until someone who had it tried Prelief and then phoned us to tell us how much better she felt. To make a long story a little shorter the manufacturer (a chemist) started doing studies on the effects of prelief on IC. Now, years later, IC patients are the biggest consumers of Prelief. The key is when and how much to take. I will be glad to explain more if it is ok to do so.
  2. suz9601

    suz9601 Member

    I have severe vulvodynia and would like to try anything to help. I have done all the usual treatments, even surgery and am still in 24/7 pain. Please tell us what you know. I appreciate it.
  3. Mareeok

    Mareeok New Member

    You can buy Prelief in most food stores, drug stores, etc, especially in Rite Aids and Walgreens, etc. It is over the counter and a bottle of 120 tablets goes anywhere from $8.00 to $12.oo depending on the store. It is a calcium product (calcium that comes from limestone called calcium glycerophosphate). The only restriction is if you have been instructed by your physician to limit the amount of calcium he wants you to have. If there are no restrictions then there is absolutely no limit to the amount you can take in a day. And the calcium is good for your bones.

    The bottle suggests taking two tablets with every food, beverage and snack but when I was working there I would encourage people who had a severe acid problem to start with a little higher dosage, perhaps three or more depending on how bad the problem was. There is nothing else in it except the calcium glycerophosphate (60 mg per tablet) and a trace amount of magnesium stearate (for the processing of the tablets and that is vegitable derived from palm) in each tablet.

    For vulvodynia I would suggest starting with 3 or 4 tablets with everything you eat and drink for about half a week to a week (that includes snacks). You can start higher if you want. It wont hurt you. You can also take 3 or 4 tablets right before you go to bed if you get up a lot during the night with any overactive bladder or pain. When you take it for food and drink take it with your first sip or first bite. What it does is neutralize the acid that is in the foods and beverages so the acid doesn't get into your system thus the acid doesn't get into your bladder so it allows your bladder to calm down and heal. If you get good results with 3 or 4 tabs after the time alloted then try decreasing the amount one tablet at a time till you see what amount works best for you. It is faster figuring out the best dosage for you by starting with a higher dosage and then decreasing instead of starting with the two tablets suggested on the bottle and then increasing the amount till you get to the # that works best for your situation.

    For me to manage my Gerd (severe bad acid reflux) my dosage is as follows: For a cup of coffee two tablets work well for me. For pizza or spaghetti I take 3 tabs. When I want a glass of wine I don't even start less than 4 tablets and sometimes I will take more. So for a meal with spaghetti, garlic bread, a salad and two glasses of wine I will take five tablets at the beginning of the meal. If for some reason I get acid discomfort in the middle of the meal I will take two or three more right then. If I should get discomfort sometime after the meal (with me it will bother me pretty quickly...less than an hour afterwards...I will take 5 or 6 tablets right away and within 20 minutes to a half hour I will feel better. It sounds confusing but once you get how it works for you it will be easy.

    If your problem is very severe you may need to take additional tablets during the time you are consuming the food or beverage. For instance, if you have determined that three tablets work well for you on the average and then want to eat a full meal that has a number of foods and drinks that normally bother you you can try 5 or 6 tablets at the beginning of the meal. This will be easier to judge once you are familiar with how it works. That's why I suggest you take the same amount with everything you eat per day and then decrease the amount all around as needed. if you are always in discomfort taking it with everything is the best way since you are not able to isolate the foods that bother you. Practically all foods and beverages contain acid in one degree or another so it may be difficult to know what foods bother you. First thing is to get you feeling better. Then you can fine tune it to your needs. Do you know that even decaffenated tea and coffee are acidic? Olive oil is very high in acid. The other oils also have acid but not as high. All vegtables and fruits contain acid. Also chocolet, breads, eggs, fish, chicken and beef...etc, etc. Now you may not be sensitive to all and you may be able to eat something considered high in acid and not eat something low in acid. If we both suffered with the same problem I may be able to eat things you can't and visa versa.

    Some people use it for overactive bladder at night. Many people I spoke to with this problem were unawhere that what they eat during the day determines their bladder problems at night. These people should also start by taking Prelief with what they consume during the day and also take some right before going to bed. Once feeling better you may be able to take some only when you go to bed or you may need to continue to take it throughout the day. It's trial and error. Our acid sensitivity is unique to each of us. I spoke to a lot of people with IC who were able to cut down on their prescription drugs because of using Prelief.

    Now I only take it when I begin to feel discomfort. I can go weeks without having to take any. But I know wine is a huge trigger food for me so even though i am feeling fine I will still take four tablets when I begin to drink anything alcoholic.

    Prelief comes in powder form also. When i stopped working the powder was only available by purchasing it directly from us, the manufacturer. The powder is available in a 150 serving shaker for $19.95. It also comes in a small squeeze bottle (fits in pocket and purse) of powder that holds 40 servings worth for $4.00. Shipping is $3.85. The shipping price goes up by weight so you can purchase a number of bottles and still keep the shipping at $3.85. One quarter teaspoon is equivalent to two tablets and two tablets is considered to be one dose. But like I explained you can take as much as you need. I would often tell people who wanted to try the powder before buying it to just crush the tablets. It's the same thing. The powder is made without the magnesium stearate in it because it is not being formed into a tablet and the magnesium stearate is what helps it to form into tablets. The powder is good for people who want to cook with Prelief so they can make a whole pot of acid free stew, sauce, etc. Temperature does not effect the product. The powder can be sprinkled on top of or mixed into your individual serving of food. I use both the powder and tablets. I use the powder in my cup of coffee. Since I take a good hour to finish a cup of coffee mixing the powder in my cup takes the acid out. That cup of coffee can sit there all day and the acid won't come back. If I swollow the tablets when I start to drink the coffee the effects of the tablets will wear off in my system since our bodies are always changing. If coffee is a trigger food for me I may have to pop a few more tablets half way through my drinking the coffee sometimes. The effects of taking the tablets lasts for about a half hour but it often lasts longer for me and others.

    The tablets should be swallowed with your first sip or first bite so you don't allow any acid to get into your system first since Prelief works ON the food or beverage and not on your body. It doesn't affect your natural body acid that you need for digestion or disrupt any nutrients. A lot of people who get discomfort from vitamin C take prelief with it. This way they get the benefits but not the acid. But it is also having good results when taken during or after eating. However the best way is taking it with your first bite or sip. You may not get the full effect by taking it afterwards. When I quit there were studies being done because there is evidence that Prelief is having a beneficial effect on the actual cells of the bladder.

    I'm sorry this was so long. But I'm sure I am forgetting something. Ask me any questions.
    You can call the hot line number for possible coupons and they can tell you which stores carry it in your area. The stores carry it in the antacid aisle. If you have trouble finding it on the shelf DO NOT talk to the pharmacist. They don't know. Talk to the store manager. If her can't help you call the hot line number below. Most any drugstore can special order it without any trouble.

    1-800-994-4711 9AM-5PM EST. You can mention my name (Marie).

    Hope this is helpful.
    Maree
    [This Message was Edited on 09/15/2005]
  4. Marjidoll

    Marjidoll New Member

    Maree,

    I use Prelief for my bladder discomfort but have not been using enough. I only take one, I will increase the dosage.

    I have irritable bladder, burning, maybe even a mild case of IC.

    I have a friend with MS who has severe IC.I am going to send her your post.

    This really is great stuff.
  5. Mareeok

    Mareeok New Member

    Hi Marjidoll,

    There is a very low % of people that I know of who get benefit from using only one tablet. It always amazes me when I hear that. I would get a good number of people who would call to complain that it didn't work. Once we explained how they should try using it they got good results. There will always be the rare person who will find absolutely no relief using it. But at least they tried.

    We would have problems from people who were using at the request from their doctors. It seams doctors rarely take the time to find out how to use it so were telling their patients to take one tablet a day two hours after they ate a meal (groan).

    I hope you get better results by upping the dosage. Let me know if you see a difference.

    Maree
    [This Message was Edited on 09/15/2005]
  6. suz9601

    suz9601 Member

    Maree

    Thank you for all that info you posted. I will let you know when I try it and how it works. I appreciate you typing all of that out..Take care.
  7. Smiffy

    Smiffy Member

    I take Prerelief with meals; it's expensive to import to the UK. It is helpful in that it helps me eat more acidic food, such as salad, but has no other effect on the IC symptoms for which I take Elmiron, Vesicare & Amitriptyline.
  8. EllenComstock

    EllenComstock New Member

    for helping spread the word about this product. Last year I went to a new urologist and he recommended Prelief. He gave me some samples to try and now my I.C. is 80% better! I have to take more than most-four with each meal and before bed. I wish someone had told me about this product years ago-it would have saved me a lot of suffering!

    Whenever I see someone on here complaining about I.C., I always tell them about Prelief. They, too, were helped by it.

    Thanks for helping spread the word.

    Ellen
  9. Mareeok

    Mareeok New Member

    Yes, the shipping out of US is expensive. It used to be less but too many boxes got lost once past the border that never made it to the people so we had to go UPS with a tracking #. When I quit four months ago they were still trying to find a more economical way to ship out of the US. There are also internet sites they can give you that may be more cost effective than getting it from AkPharma, the manufacture.

    Ellen...we had to stop sending free samples to doctors offices because patients would keep getting more and more samples and not go to the stores to purchase it so our sales started to suffer. We had to be careful that it wasn't pulled from the store shelves. So now instead of samples we supply doctors offices with coupons. AkPharma is a small company so we have to be careful how we offer Prelief.
    [This Message was Edited on 09/16/2005]
  10. Mareeok

    Mareeok New Member

    Prelief was developed by a chemist. His name is Alan Kilgerman and he wanted to make something that would help him drink is coffee without pain afterwards. So Prelief was born. He had no idea how beneficial it would turn out to be. He continued to research and do studies and found out that food acid is the cause of many problems and that Prelief helps with these problems. I was surprised to find out when I began working the help desk there that many people are unaware of the havic food acid causes to their bodies and that most people think acid is only in citric foods such as grapefruit, lemons, oranges, etc. where in fact, most all foods and beverages contain acid. How you are affected depends on your own sensitivity to acid. Some people develope problems when young and others begin having problems later in life. Most people don't attribute the pain and discomfort to something simple like acid.

    Mr. Kligerman (in his 70's now and still very active in his company) was the original developer of Lactaid and also Beano. He sold them to different manufacturers years ago, however (middle 1990's). So even though AkPharma is a small company it is a very good company. I loved working there because it was very cool being able to help people with severe problems by introducing them to Prelief. People are thrilled to take something that is not as expensive as their meds and has no bad side effects and it is an over the counter product. It helps with heart burn, acid reflux, gerd, prostate problems, ulcers, overactive bladder, intersticial cistitis, vulvadynia (sp??), mouth sores, just to name a few.



    [This Message was Edited on 09/16/2005]
  11. tandy

    tandy New Member

    I have the product in my cupboard and have'nt been faithful at taking it~(big confession,LOL)
    therefore,..it has'nt helped me much for my IBS,Endometriosis,and poss. IC(bladder pain all the time).
    I'm getting it out as I type ,and I'm gonna give it a better shot. I was only taking 2 with meals. Now,.I'll increase it,knowing I most likely need more.
    God if theres something out there thats a help,..we wanna know!!
    Thanks again~
    Ellen told me about prelief last yr.
    Tandy :)