Off all meds

[callypat]

off all meds

My husband recently lost his job leaving us with no medical insurance for a while. Since then I have had to go off all of my prescriptions. I was taking humera, imuran, lialda, and some kind of anti seizure medication which I can't remember the name of for the stomach contractions. I have been been off of everything for about 2 months. I was hoping to control my symptoms by controling my diet. Is there anyone else doing this? My symptoms vary daily and seem to be directly related to eating certain foods and overeating. I have found though that on some days it seems like it doesn't matter what I eat and on other days I seem to be able to eat anything without consequences, this is making it difficult to know what and what not to eat. Anyone have any thoughts?

 

[drew_wymore]

I'm sorry to hear about your husbands job Cally and hence your loss of your meds. I'm off all my crohns related meds and so far I'm doing ok. I'm like you in that certain foods certainly make things worse. Most people would suggest low fiber and low fat generally will help things in the gut.

 

[callypat]

Actually, when you consider all the medication I was on and all the money I was spending in co pays, the symptoms aren't really that much different. Makes me wonder what good they were doing anyway. I was on them for the last year and a half.

 

[Jeff D.]

There is a thread here about the Japanese idea of controlling Crohn's. I would suggest maybe looking at some of that research and trying it if you can. I'm sorry that your husband lost his job. I hope your husband can get a new job with insurance soon. Best wishes let us know how things go

 

[BWS1982]

Sorry to hear as has been said, this is why I hate private insurance setups, I don't care what drawbacks come with the public flavor of it, I'm sick of feeling anchored to a company because of it's benefits, pre-existing conditions, etc....

I know all too well about the hit or miss with days in regards to diet, it's a crap shoot on luck.

 

[Kev]

well, some claim that the SCD diet will control crohns. But, its a very strict diet AND apparently you can't cheat N get away with it during 1st 2 years.

tho u have no insurance at this time, u may want to look into LDN. these pills usually only cost about $1 a day... tho economic reasons aren't the best for choosing a medicine, sometimes it's all you have to go on

 

[D Bergy]

LDN is working for me. I also use an alternative/experimental method, but the LDN is the main stay of my treatment protocol.

Cheap and effective for most, based on the small preliminary trial.

Dan

 

[karl]

you could always look into patient assistance programs. my insurance (i pay out of pocket for, none is provided through work) would not pay for name brand prescriptions.
i was put on pentasa, which came to about $360 a month. i paid for the first month, then filled out the patient assistance program with my doctor. a week later i picked up 3 months from her office for free. i believe i get it for 1 year. they fax her office the renewal forms within 45 days of having zero drugs left, although i'm down to about 20 days worth at this point and haven't heard anything. i'll have to ask her when i go see her tomorrow.

the bad thing is that i don't think pentasa is doing anything for me...

imuran is somewhat cheap, i think it comes out to about $1 a day without insurance if you get the generic (azathioprine)

i'm not sure about humira, but i did find a patient assistance program for remicade. i'm hoping aza works for me and i never have to use remicade + the program

good luck

 

[callypat]

What is LDN? Do I need a prescription for it? How does it compare to some of the other meds? I have the SCD diet book, it does seem like a bit too strict for me. I like the book "What to eat with IBD", I've been sort of using it as a guideline. I'm not currently in a flare so I do ok for now.

 

[BWS1982]

You would need an Rx for LDN, stands for Low Dose Naltrexone, and is more "new age" with IBD than most conventional meds, despite its old age in the land of medications. It wasn't originally made for Crohns, so many GI's don't know of it's newer purpose, let alone will they prescribe it. There's plenty of threads in this 'Treatment' forum about it. It's cheap but hard to find docs that would push it.

 

[Kev]

Try this site for info on LDN, including finding doctors who will prescribe LDN

http://ldn.proboards3.com/index.cgi

 

[dad_01]

I've been researching the diet called Specific Carbohydrate Diet (SCD) also, for my son. It seems to be a pretty difficult diet to follow (primarily animal protein and non-starchy vegetables; little or no grains, at least no grains containing gluten, no dairy, no added sugars).

Anecdotally there seems to be a number of people who say they have had good success with it. No clinical studies that I'm aware of (of course, I don't think that a pharmaceutical is likely to do a clinical study showing that diet can be used to treat an illness).

Like one of the other posters said, it does seem that you have to follow it very well; "cheating" on the diet apparently can undermine its effectiveness a lot.