View Full Version : Newly diagnosed and terribly confused
10-24-2004, 02:19 PM
Hi, my name is Ron. I was just diagnosed with IC on October 20,2004. The more I read about this, the more confused I get. This will explain the picture in my profile. The look of being lost :dizzy: . I never had a clue that I had IC. To complicate matters, I have Fibromyalgia, Asthma, migraine, and degenerative disc disease of the lower back and neck. I am trying to sort this all out. Not sure what symptoms are from IC or from back because of three bad discs.
The doctors want me to go on Elmiron. Being disabled, I now have to figure how to obtain the medication. Doctors are trying to help me with that part. Is elmiron something you take for the rest of your life? Is there something else I can take in the mean time. I am not even sure where to even start.
Any input would be helpful.
10-24-2004, 02:52 PM
I was just diagnosis on the 21st. How were you diagnosised? I had the c/h.
The doc put me on Elmiron, urised, Toradol, (already on Ditropan XL). He told me it could take up to a year for the Elmiron to kick in. If I understand correctly you have to stay on the Elmiron always. I will keep you posted I go back in a month.
I am new here to
10-24-2004, 04:25 PM
Hi Ron, sorry you have to add yet another disease to your list.
About the Elmiron, it's hard to say if you'll stay on it for the rest of your life because for some it stops working or they had bad side effects from it so they have to switch to something else. Than you have to consider that new ways of treating IC will emerge as the years pass but in terms of it being a long term treatment is most likely a yes.
In the mean time you can take Pyridium. It's sort of like Asprin but for the bladder and it turns your pee a bright orange shade ; D Just ask your doctor about it.
*Wishing you the best*
This is a puzzling syndrome, no one knows the cause or the cure yet. So, welcome to the boards! At least here there is a lot of information here, and yes, it can be overwhelming, but this is a very supportive community and we all do our best to listen and help.
Could this be a lifetime treatment, sure, but with research underway, let's hope the cause is found and a cure as well. I would suggest a read through of the online handbook here, as a start to knowing what is what with IC: http://www.ic-network.com/handbook/
Not knowing your symptoms, I'm not sure what to suggest, but most of us find relief in some degree from following the IC diet that is in the handbook. There are many medications, as well as some otc products that are helpful. There are boards here that are aimed at some of the common treatment medications, surgical treatment procedures and just about every part of life that IC impacts.
So, :welcome: , you've come to a very supportive community and a gold mine of information. Glad you found us!!
10-24-2004, 05:20 PM
Welcome to the ICN! Glad you found us. You will find a wealth of information about IC on this website and lots of caring, supportive people, too.
My first suggestion to you would be to start reading and learning about IC. A good place to start, if you haven't already, is with the ICN Patient Handbook: http://www.ic-network.com/handbook/ Also, an excellent book to have is The Interstitial Cystitis Survival Guide by Robert Moldwin, MD. It is available here in the ICN Shop and I believe also at Amazon and online bookstores. Your local library might be another place to check for this book. All this can be a bit overwhelming so take it a little bit at a time. We are not physicians but are here to help one another so please keep posting and we will do our best, based on our experience with this disease, to answer your questions.
Elmiron is a valuable medication for many ICers. It does not work for everyone, but it brings tremendous relief for many. It can, however, take some time before it becomes effective. Anywhere from 3-12 months is the time frame frequently mentioned before IC patients begin to see benefits from it. In the meantime, there are many other medications and treatments that can be tried to give you some relief until the Elmiron kicks in. The manufacturer of Elmiron does have a program for getting this medication to patients who otherwise cannot afford it. You mentioned your doctor is trying to get some help for you on this so perhaps this is the program your doctor was referring to. I would suggest you talk to your doctor about other meds and treatments you might also try as there are many other options that might help.
Another thing you might want to try is the IC diet. Many of us find it is the best self-help tool we have. You will find information on the diet in the patient handbook at the link I gave above. It helps many of us tremendously to follow this diet. The only way to know if it works for you is to give it an honest try. It costs nothing and may bring you much relief.
I am so sorry you have to deal with IC now on top of your other medical problems. I think you will find many others here also have overlapping conditions along with IC. Again, glad you are with us. Please don't hesitate to post any questions you have and keep us updated on how you are doing.
10-24-2004, 06:18 PM
:welcome: to the IC Network. I don't have a lot to add to responses by other members, other than to encourage you to give the IC diet a try. It can be a challenge, but is definitely well worth the effort for most of us. Hopefully your doctor will be able to get you in the program to get free Elmiron. In the meantime, there are some other medications that are very inexpensive that might help. I take an antispasmodic when I have pain and it helps. The one I take is hyoscyamine, which is very inexpensive.
Sending warm healing thoughts,
10-25-2004, 02:33 AM
You've already gotten some great advice, so I'm just going to :welcome: you to the ICN, and say that I'm sorry you have IC. Like you, I have IC, IBS, asthma, myofascial pain syndrome, fibro, and a tendency toward migraines, so I know how horrible the whole package can be!!
Just want to wish you luck in getting meds to help!
Take care of yourself :grouphug:
10-25-2004, 04:40 AM
:hi: Ron and :welcome: to the ICN family.
these lovely ladies has gave you some great advice as far as treatments and the ic diet to look in on at www.ic-network.com/handbook the ic diet can be a life saver because it helps provent flares.
as far as your medicine goes we have a list on the icn network that will help you get medicines. if you look at the bottom of my post here there is a website for low income pat. which could help you get your elimron.
also i take heparin cocktail treatments it goes threw a cath to the bladder it is a stronger form of elimron and works quicker.
but i don't know if that would be the answer you are looking for in the mean time on waiting on getting the elimron.
If you need any help finding the website on getting your medicine please pm me threw the icn or kelly we would be more then happy to help point you in the right direction.
Oh you can also get in touch with some churchs salavtion army places like that in your town they will sometimes help with some temp. help with medicine.
sending you hugs and prayers
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