just diagnosed with mcc, and also no celiac

[crystal552000]

I have been suffering for 4 years finally got a diagnosis last week of cc, did blood panel for celiac which came back negative. I don't have any health insurance and now I can't get any. The gi doc wants to put me on entocort but I don't know of anyone who can afford that without assistance. Now he has prescribed me lialda which I haven't filled yet because of the cost greatlly lower but still outrageous. I have taken loperamide, bently, reglan, and some others with no results from those. I am so tired most days thinking about quitting my job because by the time I make it home from work I can't function anymore. I have two little girls to take care of and they usually get the worst of me after my work day. Looking for any kind of help in making it through this. I feel like I am at the end of my rope and may have a mental break down if things don't change.

[JLH]

Crystal. We're glad you found us.

I hope you have the day off today so you can start reading as much as you can here. Please start with the section for newbies.

Some of us are able to control our MC (CC and LC) with diet alone while other need meds of one kind or another.

You may not believe it now, but as our guru, Tex says, you can get your life back!

Joan

[harma]

Hello Crystal welcome here. Glad you found us. Must be very hard the situation you are in now. If medication is not an option for you, because you have no medical insurance (living on the other side of the ocean it is difficult for me to understand this, to have no medical coverage, must be horrible).

Most people here control their MC with diet, meds or a combination of both. When it comes to diet, most people control their MC with a gluten, dairy and sometimes soy free diet (about half of us react to soy). Our theory here it that the intolerance to these ingredients is the fuel for the MC (not necessary the cause of it). For more information on the gluten intolerance and MC, please take a look at www.enterolab.com.

As long as the gut in not healed, most of us here have problems with digesting other food, for example high fiber (especially insolvable), raw vegetables, some types of fruits, nightshades, nuts, corn. What can cause problems in one person, another person can perfectly digest. We can be very different in this expect. It's a journey of trail and error (and believe that's not always fun)

About medication, entocort is the most used and most prescribed drug for MC. If you have no health insurance, in the US the medicine cost you a fortune (it is 10 times more expensive than in Europe). However on the internet are possibilities to order a generic version of entocort. There are members here who know where and how. I hope they will response too. It is much cheaper, so maybe that could be an option for you. I can't help you with the details, since medicine cost is not an issue for me (thanks god for that).

I am very sorry about the situation you are in now. I sincerely hope the information and the people will help you to get your life back on track.

harma

ps, Joan love your "disclaimer"

[JLH]

Harma, it is from a US TV ad. I PMed the info to you.

[tex]

Hi Crystal,

Welcome to our internet family. Sorry to hear that you have been suffering with this disease for so long, before finally getting a diagnosis. Yes, in most other countries of the world, drug prices are "capped" by government policy, so in America, Big Pharma makes up for their low profits overseas, by ripping us off royally, here.

At this online pharmacy, (in India), you can order name brand Entocort EC, for the current price of $175.00, for a 30-day supply, (90 capsules). Since it's outside the U. S., no prescription is necessary, (because U. S. doctor's prescriptions are worthless in most overseas countries). I believe that someone mentioned that they are buying this same product from a Canadian pharmacy, for the same price.

http://www.inhousepharmacy.com/digestive/entocort.html

A generic form of budesonide, (the active ingredient in Entocort EC), is not available in this country, (because of still-viable domestic patents), but it is possible to order an equally-effective generic version from an overseas supplier, and unless the new "Health Care Reform" changes this status, so far, at least, Customs has been allowing the shipments to go through, to individuals. Dealers, however, are not allowed to receive these products in the U. S. You can buy this product, (known as Budez CR 3mg), from this site, for only $4.50 for 10 capsules. If my math is correct, that means that a 30-day supply costs $40.50, (presumably, plus shipping).

https://www.alldaychemist.com/1283_Entocort-EC

As has been already mentioned, by Joan and Harma, many of us are able to achieve and maintain remission by diet alone, but for the most severe cases, Entocort, (budesonide), will help to relieve the symptoms faster, since it takes a while for the gut to heal, and with only the diet, the gut must heal naturally, whereas with Entocort, much of the inflammation can usually be suppressed sooner.

Again, welcome aboard, and please feel free to ask any questions that come to mind.

Tex (Wayne)

[JLH]

Some PP have had side effects from Entocort so you might want to order only a month's supply (if you go that route) to see if you can tolerate it.

[JoAnn]

Hi Crystal, Welcome to our wonderful family. I feel for you having to cope with all this plus have young children to care for. Just know there is hope and with diet and possibly meds, you will regain your life. I'm the one Tex referred to who is getting my entocort from Canada. I get the generic entocort (Budez CR) which costs about $65 for a months supply. My copay went through the roof ($250) for the brandname entocort in the states. I sent my script to Canada Drug. You can find them online and they also have a phone number you can call for help. I have been very happy with their service and the generic has worked just as well as the brandname for me. I know there are other Canadian pharmacies that I'm sure would work just as well. It takes about a week to get the drug. I also ordered from the TheAllDayChemist which is in India and you do not need a prescription. It is the identical product I get from Canada. It takes about 3 weeks to get that one. It will take time, but with diet changes and experimenting with different meds, you'll find your way. I hope you have help and support from family and friends. Read all you can here, do what you feel is right for you, try to rest, and things will get better. Good luck, JoAnn

[Joefnh]

Crystal some possible options in affording Entocort can be found at the following sites. It does work quite well and in least my case within a week with no side effects


http://www.astrazeneca-us.com/help-affo ... medicines/

http://free-medicine-info.tripod.com/610.html

http://www.squidoo.com/buyentocort

http://www.patientassistance.com/D2382- ... oupon.html

Best Wishes

--Joe

[tex]

Joe,

I realize that you have the best of intentions, and we all appreciate any leads we can get, but unfortunately, none of those leads work. There was indeed once an assistance program for Entocort EC, but after AstraZeneca sold all marketing rights to the product to Prometheus Laboratories, all those programs providing free or subsized Entocort were discontinued by AstraZeneca, and Prometheus has never offered any assistance program for Entocort.

None of of us have ever been able to locate any other reliable, long-term, national or international source of assistance, either. There are possibly a few local, church, or community related possibilities, but usually, those are very limited, and have to be renewed each month, and require a re-application each month, including a doctor's statement. IOW, they are strictly a short-term benefit, (if you can find one) - they are not very practical in the long run, and Entocort is usually a relatively long-term prospect, if reliable remission is to be attained and maintained.

The foreign pharmacy sources, seem to be the only viable low-cost option, at the moment.

Tex

[Joefnh]

Thanks for the info Tex I did not realize that.. I did have a friend about 5 years ago received some assistance from another manufacturer for a medication he needed but is was not Entocort.

Again thanks

--Joe

[ant]

Dear Crystal

So glade you found this board. I live in Hong Kong where the prices for Entocort seem to be as bad as in the USA. And my insurance does not cover it. So I have got Budez CR through the site posted from India. It seems to work just as well as Entocort for me. I started with 3 Enotcort pills a day for about 8 months and have now been able tapered down to one a day and switched to the generic. I am sure you will get your life back over time.

As others have said best thing to do is to read as much as you can hear and ask questions --- there is no such thing as a silly question or yucky subject here.

I am sure you feel down and depressed. We are here to help as mush as we can.

Ant

[Gabes-Apg]

hi there crystal



gday from Australia.

I am sure your journey to diagnosis has been close to hell. Be assured that now you have diganosis it will get better. Your life wont be endless D and other digestion issues.



as others have mentioned all of us on this site use varying methods of management. What works for one does not necessarily work for another. Then again the information that we all share is very valuable to coming up with a managment plan.
I have managed to get reasonable management without steroids, I am using small amount of meds along with diet and natural therapy.
I was diagnosed in Dec 09, so coming up to 6 months post diagnosis. I wont lie, life has changed alot.

at first the amount of information and topics discussed on this site can be overwhelming so feel free to ask any questions and we can help you along. When you have some time and energy then there is a great resource of information and help (articles and dees kitchen etc)

take a deep breath, hang in there
you have found a place that you share the crappy days (pun intended) share the good days, and ask basically anything! (things like gas, rash on your butt, Bowel motion appearance are not taboo topics)




How old are your girls? do you have other family nearby?

big hugs and take care

[ant]

as mush as we can.

Just noticed my typo!. So befor anyone else jumps in I meant to say "much". But now I think about it "mush" is pretty appropriate!

It is good to smile or even laugh in the face of this demon!

Ant

[crystal552000]

My daughters are 3 and 6, my mom lives close by but she has he girls while im at work, and well by the time I finish my shift I am just so exhausted, Irritated, and sore. I know my girls are paying the price of me working because I spend all my good time at work and they get what is left after a long hard day. It saddens me to know that. Me and my husband is getting ready to make changes so that I can stay at home with them. And for any of you that live in the US knows that if you are just above that classification of being poor and need assistance it is very hard in the US you are better off really poor or really rich

[Gabes-Apg]

it is a big thing making the changes to accommodate this demon.
and when it affects love ones that would be hard

I come home each night and within 1.5hrs of coming home i am in bed asleep.
I spend 4 - 5 hours on sundays cooking up all my meals and snacks for the week as i can not rely on having enough energy of a night. (and there is no one else to cook them for me)

I was not keen to take meds, but have found to ensure there are no accidents at work, i have to take a small amount.
I live alone and dont have family near by so I have to look after myself. Anytime i have off work is without pay (i used up all my paid leave pre diagnosis)

this is the first month in the last 8 that i have not had any unpaid leave so will get my full payment! (It will feel like christmas!)

Dont feel guilty about the girls, they have their dad and your mum. spend a bit of time on you and get control of this demon and before you know it, you will be able to give them the time and energy you want!

take care