Chihuahua People Forum banner

61 - 80 of 85 Posts

·
Registered
Joined
·
3,235 Posts
Hey ladies I did not even see these replies!!! What the heck?!?

Anyways I feel a bit better reading books and that mine isn't as severe as some but what I meant by I can't tell what triggers is bc I'm in constant pain it never goes away some days I eat nothing and have just had water and can barley walk!!!

I'm trying diff supplements and relaxation

I can't eat eggs I'm allergic and I don't eat fish :(

I'm thinking of going gluten free as there's tons of positive studies on the link between gluten and ic have u ladies tried this? Does it work?

I'm reading the better bladder book and to wake in tears

Any other good book recommendations? Of course I read online too but online confuses me some websites say one thing then another contraindics it!

Ugh I can't afford elmiron is $200 a month and pyridium was $400 for 3 months :(

So I have to rely on self help

My dr wants me to get the bladder installations but I probably can't afford that either I work full time as a nurse too yet get screwed for drug benefits pees me
Off!

I'm peeing up to 25 times a day now but am trying to train my bladder to hold it a bit more without harming myself further it's hard at work!!!
I know the meds are very expensive, if you go to manufactures you can get coupons. Also the Pyridium you can get a better one over the counter called Cystex . It normally at walmart in the lady ob things. My Doctor put me on it and it works better than the pyridium and it not orange.
It will help with feeling you have to pee al the time. Here is link to tell you about it. They even have fb site. DONT GET THE CRANBERRY from them.. BAD BAD for you.
Cystex® Manage Symptoms of UTIs - Cystex® Urinary Pain Relief Tablets Help Manage Symptoms of UTIs... and Now Cystex Liquid Cranberry Complex promotes Urinary Health!
 

·
Registered
Joined
·
5,614 Posts
Personally, I wouldn't recommend Elmiron. I've seen three urologists, and the first two recommended it to me. It's covered by our healthcare (after deductible) so I went for it. I was on it for years, and I suffered bad side effects, and apparently a lot of people do. When the side effects started to outweigh what I believed to be the benefit (which I now know what basically nothing), I saw the last urologist who is SUPER up to date with IC and new medication/technology. He said he wouldn't prescribe Elmiron to any of his patients, and would only use it as a last resort, because he believes it's that dangerous.

Thankfully I have been able to manage on my own the past few months and haven't had to try any new medication. I've tried about 7 or 8 medications but he was going to start me back at square one and try Atarax and Imipramine. Have you talked to your doctor about other medications that you could try? Elmiron really isn't the be all and end all for IC, and in fact doesn't work for most people.
 

·
Registered
Joined
·
5,614 Posts
I just noticed you live in Canada. Not sure about Ontario, but almost all of the IC drugs are covered in BC. Do you have an assistance program there for lower income? Might be worth trying. I did it and it totally covered my Elmiron after I paid a deductible.
 

·
Registered
Joined
·
3,235 Posts
Personally, I wouldn't recommend Elmiron. I've seen three urologists, and the first two recommended it to me. It's covered by our healthcare (after deductible) so I went for it. I was on it for years, and I suffered bad side effects, and apparently a lot of people do. When the side effects started to outweigh what I believed to be the benefit (which I now know what basically nothing), I saw the last urologist who is SUPER up to date with IC and new medication/technology. He said he wouldn't prescribe Elmiron to any of his patients, and would only use it as a last resort, because he believes it's that dangerous.

Thankfully I have been able to manage on my own the past few months and haven't had to try any new medication. I've tried about 7 or 8 medications but he was going to start me back at square one and try Atarax and Imipramine. Have you talked to your doctor about other medications that you could try? Elmiron really isn't the be all and end all for IC, and in fact doesn't work for most people.
The Elmiron has helped me so much, I ll use again if get bad again it been 2 years under control now.
 

·
Registered
Joined
·
5,614 Posts
The Elmiron has helped me so much, I ll use again if get bad again it been 2 years under control now.
It definitely works for some people, just not the majority. I started experiencing a lot of hair loss :(, headaches, bleeding of the gums, had a hard time breathing, and would bruise if I just bumped into something. It's definitely worth a try if nothing else works, but it's good to be aware that it's possible that it's not the best drug to be on long term. I believed it was working wonders for me and refused to go off of it, and then finally when the hair loss was becoming too much I stopped taking it I haven't had any increase in symptoms in months and months. There may come a time when I will have to go on medication again, but it won't be Elmiron for me. Thankfully my hair is starting to grow back too!
 

·
Registered
Joined
·
3,235 Posts
It definitely works for some people, just not the majority. I started experiencing a lot of hair loss :(, headaches, bleeding of the gums, had a hard time breathing, and would bruise if I just bumped into something. It's definitely worth a try if nothing else works, but it's good to be aware that it's possible that it's not the best drug to be on long term. I believed it was working wonders for me and refused to go off of it, and then finally when the hair loss was becoming too much I stopped taking it I haven't had any increase in symptoms in months and months. There may come a time when I will have to go on medication again, but it won't be Elmiron for me. Thankfully my hair is starting to grow back too!
Wow I am so Glad I didn't lose my hair.. That too bad..
 

·
Registered
Joined
·
5,614 Posts
I don't have a low income at all lol I work full time As a nurse I make great $ but I'm not willing to pay $200-$400 out of pocket for medication I do not have medical benefits at my job.
Did you already check to confirm that it's not covered by your basic health care? In BC, they encourage all people regardless of income to apply for fair pharmacare. Even though I am married and our income is not considered low, I still am eligible for a portion, which helps out.
 

·
Registered
Joined
·
3,889 Posts
Discussion Starter #71
I don't think we have pharmacare I've never heard of it. I know bc and Ontario are different. I've googled drug coverage and there's nothing unless u pay for it monthly and they'll pay a majority of the coverage BUT its $80/month to have that and they don't even cover all of the drug cost lol from the sounds of it I wouldn't want the drugs anyways!

I'm trying to just take supplements and diet I may go gluten free also see if it helps
 

·
Banned
Joined
·
10,706 Posts
Hey Sherri,

Just stopping by to say hello, hope today wasn't too bad for you.
 

·
Registered
Joined
·
3,889 Posts
Discussion Starter #73
Just seeing this now things have been the same today is the one day that things have been worse pain wise but I'm going to go to work and try and keep my mind off of it. I work on a psychiatric unit so it always keeps me very busy lol.

I caved last night at work and had a couple of slices of apricot so now I am paying for it :(

The diet transition is getting a little easier though.

Hope u are ok!
 

·
Registered
Joined
·
787 Posts
I don't have any experience with IC, though I'm so sorry for all of those here who are afflicted with this condition!

Doing a little reading about what foods are no longer acceptable, I wanted to offer this recipe for breakfast to Sherri, as I think everything in it is okay to eat with the IC restricted diet. Once you have all the ingredients on hand, it's really easy to make and very filling. When I have a bowl of this for breakfast, I'm rarely hungry again until lunchtime.

1/4 cup old-fashioned oats
1/4 cup grape-nuts or Ezekiel-brand equivalent
1/4 cup bite-sized shredded wheat
1/4 cup Uncle Sam cereal
1 tbsp ground flaxseed meal
1 banana, sliced
a handful of blueberries
a handful of raisins (if IC okay)
half a pear, peeled and sliced
3/4 c milk or milk substitute

Put everything together in a bowl and add milk or milk substitute (I use almond milk). I also add a drizzle of maple syrup to sweeten it.
 

·
Registered
Joined
·
3,889 Posts
Discussion Starter #75
I don't have any experience with IC, though I'm so sorry for all of those here who are afflicted with this condition!

Doing a little reading about what foods are no longer acceptable, I wanted to offer this recipe for breakfast to Sherri, as I think everything in it is okay to eat with the IC restricted diet. Once you have all the ingredients on hand, it's really easy to make and very filling. When I have a bowl of this for breakfast, I'm rarely hungry again until lunchtime.

1/4 cup old-fashioned oats
1/4 cup grape-nuts or Ezekiel-brand equivalent
1/4 cup bite-sized shredded wheat
1/4 cup Uncle Sam cereal
1 tbsp ground flaxseed meal
1 banana, sliced
a handful of blueberries
a handful of raisins (if IC okay)
half a pear, peeled and sliced
3/4 c milk or milk substitute

Put everything together in a bowl and add milk or milk substitute (I use almond milk). I also add a drizzle of maple syrup to sweeten it.
Mm this sounds good thanks I'd have to alter a few things and I'm not sure about grape nuts never heard of them and also SAMs cereal
 

·
Registered
Joined
·
787 Posts
Mm this sounds good thanks I'd have to alter a few things and I'm not sure about grape nuts never heard of them and also SAMs cereal
I think grapenuts are okay. They're on the list of okay foods in the link that's in this discussion. Here are their ingredients:
Whole grain wheat, flour, malted barley flour, salt, dried yeast

Reading through the ingredients in Ezekiel's, they do contain soy. The ingredients in Ezekiel's (the one I use) are:
organic sprouted whole grain wheat, filtered water, organic malted barley, organic sprouted whole grain barley, organic sprouted whole grain millet, organic sprouted whole lentils, organic sprouted whole soybeans, organic sprouted whole grain spelt, sea salt

Uncle Sam's cereal contains:
Whole wheat kernels, whole flaxseed, salt, barley malt

So skip Ezekiel's and stick to the grapenuts.
 

·
Registered
Joined
·
3,889 Posts
Discussion Starter #77
I think grapenuts are okay. They're on the list of okay foods in the link that's in this discussion. Here are their ingredients:
Whole grain wheat, flour, malted barley flour, salt, dried yeast

Reading through the ingredients in Ezekiel's, they do contain soy. The ingredients in Ezekiel's (the one I use) are:
organic sprouted whole grain wheat, filtered water, organic malted barley, organic sprouted whole grain barley, organic sprouted whole grain millet, organic sprouted whole lentils, organic sprouted whole soybeans, organic sprouted whole grain spelt, sea salt

Uncle Sam's cereal contains:
Whole wheat kernels, whole flaxseed, salt, barley malt

So skip Ezekiel's and stick to the grapenuts.
I don't think we have SAMs cereal in Canada and where would I get grape nut? It's a cereal?
 

·
Registered
Joined
·
3,889 Posts
Discussion Starter #79
Ok perfect I have to go grocery shopping this weekend ill see what I can get and try and make something similar sounds delish!!!! Thanks for letting me know about It and putting in the time to research everything you're awesome!!!!
 
61 - 80 of 85 Posts
Top