Diagnosed at 24

[PipersMommy]

So I posted this in another section, but I think this is the better place for it. Sorry, I'm new and still figuring the site out

Hi! I'm BreAnn, a 24 year old stay at home mom of a little girl who will be 3 this month. I have endometriosis and Wednesday I was diagnosed with interstitial cystitis. I had the potassium test, and I am still in a lot of pain. It seems cruel to recover from the horrid flare the test while also in the throws of kicking a wicked caffeine addiction. As a vegetarian I am also struggling immensely with sticking to the diet. I am on day 3 with no cheats so far, but boy am I starving!!! They have me on Uribelle, Elavil, and of course Elmiron. I have been taking the Uribelle, and Elavil for a month now (my uro had such strong suspicions of IC, even before the test she prescribed) However, apparently there is a "manufacturer shortage" (thats atleast what my dr called it), and until I got a call today that they were able to fill the Elmiron I hadn't been able to find it. Well, imagine my surprise when I went to the counter and the lady told me it was going to be $510.12 for ONE MONTH! I will preface this by saying that I am not a stay at home mom because my husband and I are rolling in money, I am a stay at home mom (bc I think it's best for my daughter, but) mostly because for the last 3 years I have been in so much pain, so many surgeries for endometriosis that never seemed to stop the pain, and so many countless dead end doctors visits that I would've been fired before I even got started in most places. So, suffice it to say that there is no way we can come up with that kind of extra money. Our insurance appears to only be willing to pay $96 of the prescription, and I feel like I am doomed to be in pain forever. Wow, I guess I needed to get a lot more off my chest than I thought. Before I was diagnosed I had never even heard of IC let alone know someone who has it. I'm so thankful to have found this forum. It helps me not feel so alone. My husband is amazing and supportive the day I was diagnosed he showed up at home with lavender epsom salt bath, and a pad for the bottom of the tub. He encourages me to talk to him about it, but I can sense that he's super stressed about the financial burden this is putting on us and completely freaked out that I was in so much pain after the test so I feel that sharing how scared I am it would make it worse on him. It's been so nice just reading everyone's post. I've been staring at the forum for weeks, but I felt like when I posted on here it would become real, and I was a little shaky on that, but I look forward to getting to know everyone

[Belva Pangallo]

I Have IC

Hi BrAn. I just read your post. I know what you are going through and it sure
isn't any fun. Some times the pain seemed like you couldn't take another minute of it. I had tried so many things and nothing seemed to help. A few months ago my family physcian asked me if I had tried Lyrica which I hadn't. He gave me some samples 75mg and I started taking them I think in about 3 days I was feeling so much better and so much of the pain has subsided. I can do things that I wasn't able to do before and I sleep so much better at nite. I take it at nite. I haven't had any side affects from it except I have gained a little weight but I am sure I can get that off. Lyrica is what people with Fibromialga take it is a neurological pain med for the nerves. Tha bladder has a lot of nerves in it and I think that is why it is working. Good luck and ask your Dr for some samples and see what it does for you. I told the Urologist and he is going to have his patients take it and see what it does for them.

[dg2901]

Suggestion re the Elmiron cost: call around to other pharmacies and see what costs you come up with. As odd as it may seem, not all pharmacies charge the same. Another option, should you not find one thats affordable to you is to appeal to your insurance company. This can be done by your Dr and pharmacist.

Wishing you well.

[PipersMommy]

Hi BrAn. I just read your post. I know what you are going through and it sure
isn't any fun. Some times the pain seemed like you couldn't take another minute of it. I had tried so many things and nothing seemed to help. A few months ago my family physcian asked me if I had tried Lyrica which I hadn't. He gave me some samples 75mg and I started taking them I think in about 3 days I was feeling so much better and so much of the pain has subsided. I can do things that I wasn't able to do before and I sleep so much better at nite. I take it at nite. I haven't had any side affects from it except I have gained a little weight but I am sure I can get that off. Lyrica is what people with Fibromialga take it is a neurological pain med for the nerves. Tha bladder has a lot of nerves in it and I think that is why it is working. Good luck and ask your Dr for some samples and see what it does for you. I told the Urologist and he is going to have his patients take it and see what it does for them.

Thanks so much! I am gonna ask them tomorrow at my instillation about the Lyrica, and hopefully I can give it a shot! I have a feeling that a lot of my IC symptoms are linked to nerve stuff because I've been on the diet for almost a month now, and it hasn't really made any difference in the level of pain I'm having just has lessened urgency a little. Thank you again for the advice though

[PipersMommy]

Suggestion re the Elmiron cost: call around to other pharmacies and see what costs you come up with. As odd as it may seem, not all pharmacies charge the same. Another option, should you not find one thats affordable to you is to appeal to your insurance company. This can be done by your Dr and pharmacist.

Wishing you well.

The cheapest I've found in my area is around $4, but I called literally 17 pharmacies and only 4 even had any Elmiron left. The rest said it's on "back order" for atleast 6 months My husband intends to call the insurance company for me tomorrow and try to see if they'll work with us to cover a little more of the cost. I really appreciate the tips, thanks for responding

[VickiB]

Yes, that price on Elmiron is ridiculous. (I'm not a big fan of pharma companies! ) They do have programs to help people afford their meds if you can qualify. Might be worth checking out.

The main thing I wanted to ask is whether you've been checked for an infection? I don't know how long it's been since you had the PST, but whenever a catheter is involved there's always a chance of getting an infection from that.

I hope things get better for you soon!
Vicki

[PipersMommy]

Yes, that price on Elmiron is ridiculous. (I'm not a big fan of pharma companies! ) They do have programs to help people afford their meds if you can qualify. Might be worth checking out.

The main thing I wanted to ask is whether you've been checked for an infection? I don't know how long it's been since you had the PST, but whenever a catheter is involved there's always a chance of getting an infection from that.

I hope things get better for you soon!
Vicki

The pharmaceutical companies certainly are the devil and there's no way around that!!! I'm waiting to hear back from Johnson & Johnson's med program now so we shall see how that goes! It has been about 3 weeks since I had the PST and the instills are helping but I am still in a lot of pain. With the instills every other day it seems like as soon as I start feeling better from one catheter they go and put another one in!

[Deirdre]

((((hug)))) It is so hard with little ones. I guess it is always hard but I can only speak as someone with little kids (7, 5, 1) it's tough to be a mom and be in pain. I hope you get some relief.

[sailawaygrl]

The elmiron shortage is from a company is Germany that produces one part of the med and they are severly behind in production...can't remember the cause. Another alternative for you might be to try cystoprotek or one of the other natual remedies found in the IC sales section. From what I understand cystoprotek is essentially the natural form of elmiron.
I hope you are able to find something to help you and soon. The advice on the lyrica is a good one, it can help a lot of people with their pain. There is also the option of some low dose anti depressants, when taken in a low dose certain one's will help with pain.

Let us know how things go for you,
Sandra