Long Term Effects

[kc0626]

I was just recently diagnosed with IC. I was put on Elmiron three times a day. But the doctor is taking me off it to be sure it is IC but said if I have another flare I would have to go back on it and that I will have to take this or something else for pretty much the rest of my life. I was just wondering if there are any long term effects of taking this medicine such as liver problems or something along those lines. Also I would like to know if anyone has been through pregnacy with IC. Any help would be great.

KC

[~*~Christine~*~]

I'm not sure of the long term effects but the most common side effect is dry throat/mouth/eyes which, can be relieved with Flax Seed Oil capsules (available at drug stores). A lot of people (including moi) can't stomach the capsules because they cause stomach and headach problems so I just dispose of the capsules because I'm convinced that they're evil. Read about it here http://www.ic-network.com/forum/showthread.php?t=15027 ;)

[ICNDonna]

Yes, people with IC do have babies. I had mine before I developed IC, but hopefully some of our new mothers will respond.

There are potential risks with all medications, even the common aspirin. However, if we work with our physicians and keep them informed of all the meds, including herbals, that we are taking --- and have regular physical examinations which include blood work, the risk is substantially reduced. I agree that it would be nice to not need to take medications, without them the risk to my health would be much worse.


Donna

[saptree]

Hi,
I had a baby while having IC. I made it thru the 9 months without any medication. I just maintained the IC diet, found pre-natal vitamins with ester-C, and took lots and lots of Fiber-Con. My symptoms were mild while prego compared to normal. My IC fluctuates with my menstrual cycle. Once I quit breastfeeding, my IC flared up again big time and had to go back to the uro. I started taking Elmiron and Atarax in September. I went thru the Elmiron instills and they didn't help. I quit both meds cold turkey last month when my son (now 15 mos) came dowm with RSV really bad and was hospitalized. I also switched to a low dose birth control- this really calmed my bladder down. But I was already signed up for a hydro, as I responded well to the one I had 3 yrs ago. So I had a hydro this past wed, the 23rd, and I'm home with a foley cath that I will take out myself tomorrow morn. Well, my doc sent me home agaig with an elmiron script. He still wants me to take it even though we are going to do DMSO cocktails next. I hate being a walking pharmacy! I don't know anything about long term side effects, but I hope they are not too bad. Sometimes we have to live for today, and hope we can get a better drug tomorrow.
Good Luck!
Sherry

[diane57]

Also keep in mind that scientists are making good progress in learning why people develop IC, and hopefully not far behind will be better treatments or a cure. I'm hoping that within 5 years or so they will have made MAJOR strides - IC is getting a lot of publicity, a lot of researchers are working on it, more and more people are getting diagnosed, so that will snowball into more demand for treatments. (And once a big greedy drug company figures out that developing a great new IC med or cure will put money in their deep pockets, LOOK OUT, they'll be working on it 24/7.)

Babbling, I know. My POINT is that we probably will not have to take our IC meds forever. At the very least I'm guessing that in the not-distant future we may stop with our current IC meds and switch to betters meds, and then that will buy us a little more time until they figure out a cure. Until then we have to just do the best we can to try to keep ourselves healthy and comfortable.

Also, I know a lot of people that have been on blood pressure or cholesterol or allergy or seizure meds for 10, 20, 30 years, and they all seem to be doing fine. Some of them had side effects at first that went away or they just learned to live with, some had no side effects, some had major side effects but they switched to other meds and are ok now. Donna's absolutely right, as long as you keep up with your doctors' appointments, get your bloodwork done when recommended, and discuss with your doctor any side effects you're having, all should be well.