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***ICNDonna*** · 03-22-2007, 07:13 AM

It may take a while for the lyrica to work so you may feel better soon. Did you begin taking it yesterday; I think you said you planned to give it a try.

I hope you get some relief soon.

Donna

**jen74** · 03-22-2007, 07:43 AM

Hi Donna.
Yes, I took it last night. It is probably to soon to see a difference yet, so I guess I will see how it goes in a few days. I am suppose to do the instill tomorrow. I am a litttle nervous, well, actually a lot nervous :o). I dont like not knowing what to look foward too or what is going to happen.

I am a little annoyed at this hospital though. I called two days ago trying to talk to someone about these instills and how much they charge so I can ask my insurance company how much they will cover and I have not heard back yet. It is almost like they dont want me to know. I asked the nurse how much do you charge and her answer was that they have no idea about that. That is just ridiculous. They have to know how much they charge, or at least they must know who does the billing.

I just dont want to get smacked with a huge bill in the end. The nurse said that it is a 6 week course. I hope they dont charge you the full six weeks right up front. I mean what if I do the first instill and it does nothing or makes me worse, I sure would not doing anymore and I dont intend to pay for a full six weeks if I dont have it done for that long. I hate this because I have been screwed so many times by the hospitals with what they charge. For instance, I had some simple blood tests done back in Janurary and I ended up having to pay $685 out if pocket due to what they charged my insurance(an insane amount). Well my insurance would not cover it all so I had to pay the rest. I just want to be prepared this time upfront.

Anyhow, sorry for venting, I just get so fed up with dealing with these hospitals and people who love to give you the run around. Thanks for listening.
Jen

**ihurttoo** · 03-22-2007, 01:57 PM

I do the instills at home now, but had to do them at the Drs. office for a while first. From what I have read here, that is pretty much how it worked for most IC patients at first. There are a few reasons, but the main one is that there is no iron-clad recipe that works for everyone. They sometimes have to make adjustments to the dosages of the meds they instill until they work for each patient. Sometimes that means adding more of one thing or less, or changing one ingrediant to a different one, or even adding a steroid. They need feedback from the patient each time to know what adjustments need to be made. That is why it is unlikely they will let you do them at home until it has been established over some time that they work for you in the office. Once they strike upon a combo of meds that helps you in the office, they may very well decide to let you do them at home. So, please dont loose faith.

I know they are expensive to do them in the office, (mine ran about $225 each there, but at home, they run me about $3 without insurance, but with me sterilizing and reusing the caths.) I know that is alot of profit, but they are much cheaper to do them at home b/c you dont have to pay for the salaries of the Dr.nurses, receptionist, office mgr, billing secretary, and other staff. Also, at the Drs. office, there are other things built into the costs of the visit besides the salaries, including rent for the office space, costs of equipment, membershop dues to various medical societies, mag subscriptions for the waiting room, malpractice insurance, etc, etc. The list is endless!

I know it is hard to wait and see if they will work. But, they really do help most people, and if they dont help you, they need to see that too.

I am glad they gave you something to help with the pain for now too, the Lyrica. It is a neuropathic med that helps with nerve related pain. It sometimes takes a few weeks to notice a difference, but the neuropathic meds help alot of ICers. Sometimes the dose needs to be titrated up (or down). Please let your Dr. know if you are having any side effects. It is also important to let them know if you dont feel any difference at all after a few weeks. If that occurs, they may want to increase the dose. It sometimes takes a month or so to find a dose that is effective for each patient.

I know it doesnt seem like they are trying to help you right now, but they obviously truly believe you are in pain, or they would not have given you anything. But, they did give you the Lyrica, so they obviously believe you are in pain.

There are still lots of other things to try, so please dont lose hope. If the instills and Lyrica dont work, there are several other neuropathic meds that might work, such as Keppra and Neurontin. Also, alot of the meds for IC (and the diet) usaully take a few months to work. They may be waiting for those all to kick in and are thinking that the instills will help you in the meantime.

You can still ask for a referral to a Pain clinic. I know you think your Dr. will turn you down, but I dont necessarily think you are right about that, after all, if they didnt believe you are in pain, they wouldnt have given you the Lyrica or be doing the instills. So, they must believe you are in pain. But, they also proboboly truly believe the instills will help and are hopeful that the Lyrica will help once you get it in your system and the dose is titrated to the right level for you.

If you are still in pain once you try things, I hope you will press them on getting something else for the pain or for a referral to a Pain clinic. I am currently being treated by a Pain mgmt Dr. and it has helped alot. But, my Dr. didnt refer me there until I failed all the non-narcotic meds, treatments and therapies. That seems to be the norm for most Drs.

I truly hope that the insills and Lyrica will help you. I know it is hard to hang in there, but I hope you start feeling better soon. I will keep you in my prayers.

Hugs,
Amy

**jen74** · 03-23-2007, 03:14 AM

Re: Amy

Hi Amy.
Thanks for responding. Wow, I cannot believe they charge that much for the instills. My gosh, I am not sure if I can even afford that. $225 for each instill? I have a huge deductible( $2,500) plus I still have to pay 20% after that. I called three days ago the hospital trying to find out exactly what they charge, and can you believe not one person called me back.
I called the nurse twice and no one returned my calls. It is absolutely absurd that they cannot tell me something as simple as what they charge for the instills. I dont want any suprises. Last time I had some simple lab tests, I ended up paying over $600 out of pocket. That was only for a lab test. I was sooo mad.
This doctor I am seeing, I seriously doubt she will ever let me do the instills at home, or at least that is the feeling my hubby and I got from them. The nurse made it seem like they do only 6 treatments and then you are cured LOL!! I was so shocked when she told me that I should be good for maybe years just after 6 instills. Dont get me wrong, that would be great if that happened, but I thought that sounded a bit unrealistic.
I am sooooo nervous about the instill today I feel nauseas. I keep thinking of all the bad things that may go wrong. I am worried about getting a bad reaction or that it will swell me up so bad I wont be able to go pee or it will cause worse pain. Gosh, look what these doctors have done to me, I have lost all faith in them because of what they have done to me in the past. As you can probably tell, I have really had some BAD doctors in the past that have really messed me up. My poor dad will not even go to see a doctor anymore after seeing what I have been through with them.
Five years ago, my mom was diagnosed with terminal liver cancer(secondary), and they had my mom go through tons of tests, some of them painful just to tell her afterwards that there was no hope anyways as it was fourth stage. They knew this before she went through all these tests but did not tell us until afterwards. I was so mad and asked one of the nurses on the side why on earth did they put my mom through all those tests if they knew there was no hope, and the nurse just smiled and rubbed her fingers together making that money gesture. It is sad. I guess that was when I first started to not trust doctors.
Then I got sick with my stomach motility issues and other health issues and was steered all wrong by doctors, and these were supposedly top gun doctors. I was told I had at least 7 diseases that I dont even have, and I am talking bad diseases. I was told I had scleroderma, lupus, Barrett's esophagus, Leukemia, and a bunch of different things. I had all these things going wrong with me, and getting no help, just doctors telling me what they think without even doing the correct tests to see for sure. I even had a Doctor, actually a professor of medicine at the university of Chicago hospital(one of the best hospitals in Chicago) actually tell me I was sick because I was a woman, and that all women over exccagerrate everything and make a mountain out of a mole hill. I thought my hubby was going to punch this doctor in the face after he said that. I mean here I was very sick and in pain,Paying him a ton for this appointment and he tells me it is all my fault because I am a female. Talk about seeing RED.
Anyhow, that is why I guess I just dont trust the medical field at all anymore. The uronurse told me that I have to stop second guessing the doctor all the time, and I just thought to myself, the day I do that, that will be the day I would likely wind up dead from one of their mistakes!
Anyhow, I did not mean to babble your ear off there :o). Thanks for listening. I just hope for some relief. Not sure if the lyrica is going to help me or not. I was on neurontin (high doses) a couple years ago for severe neuraliga pain and it did nothing for my pain at all and just made me sick to my tum. I can tell my motility issues with my tum are acting up some since starting the lyrica also and I am on the smallest dose there is(25mg). I hope this will pass and the lyrica will start to help. Medicines just dont like me to well for some reason :o).
Thanks again Amy for the support and for listening. I will let you know how the instill goes today.
Jen

**ihurttoo** · 03-23-2007, 04:26 AM

I know it is hard to trust again after you have been burned. But, hopefullt things will go well with this Dr. and perhaps your faith in the profession will be restored. I dont know if they told you this or not, but Lyrica is a med you need to take daily to get the full effect. It may take a few weeks to really start helping or noticing a difference. In the meanwhile, if you are worried about motility issues, it would probobly be a good idea to go ahead and set up an appt with your Gastro to form an action plan for that, b/c almost eveything they can give you for pain has that side effect, as well as several of the other meds used to treat IC. It may be time to tweak the dose of your motility med to get you thru the med adjustments over the next few months.

I cant believe that no one called you back! That is ridiculous! But, hopefully, you will hear something from them today. Dont get spooked just on the figures my Dr. charges. Yours may charge must less. If they end up helping you but you cant afford to have them done, do try having a heart to heart with your Dr. and see if something can be worked out. If they still wont let you do them at home, you might ask about setting up a pmt plan. Most Drs. offices are willing to do this.

I really, really hope these help you and that the Lyrica also brings you some relief. I know how painful this disease can be. Please post or pm me and let me know how it goes today.

Wishing you luck!

Hugs,
Amy

**jen74** · 03-23-2007, 06:39 AM

Thanks Amy.
ACtually I has to stop my motility med completely because of this IC. It was making it soo much worse. I see my gastro every month, I see him April 12th. Unfortunately, there is nothing else he can offer for my stomach motility issues. The drug I was taking was not even FDA approved, but was the only med there is that helps with slow motility. The one that is FDA aproved which is called reglan, I cannot take at all due to side effects. I have two diseases that clash with one another it seems.
Jen

**mellusk** · 03-23-2007, 07:16 AM

I imagine with the size of the hospital you're visiting in Chicago, they more than likely have an entirely seperate department devoted completely to billing, and you should be able to find a number in the directory to reach them. They can possibly tell you more about the costs, but even they won't know much without talking to your insurance companies. Most likely, the nurses can't tell you that information because they have no way of knowing it themselves. I've had to do this before when I had a breast lump examined. Even the receptionists were clueless because all that info goes through the hospital's billing department - which I warn you, is not the most warm and cuddly part of the hospital to talk to. They're used to having people yell and be angry at them, so they tend to not go out of their way to be friendly since they assume every phone call will be more of the same.

You know, it's funny, I've read several articles over the year claiming that women get better pain and medical treatment in general than men because men aren't taught to be more specific and open about their problems. I would imagine some guy that's supposed to be a top doctor would have access to a lot more information on that than I am. I would tactfully, yet firmly, have told that guy that he is way out of line. The stuff people say sometimes is unbelievable!

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