Entocort Trial

[seabare]

Well, I don't know what happened to my first draft, but it just disappeared, so I'll start all over...

After more screw ups and drama than I need to mention here, I finally got my old medical records from my old GI up to my new GI along with info. that my soon to be former GP failed to send up the first time. So they allowed me a second appt. after waiting another 2 weeks.

Based on all the wonderful support from everyone here and all the reading I've been doing, I arrived armed and dangerous with questions (really demands). And, BTW, to all you brave souls out there who are managing your condition with diet, acupuncture, holistic medicine, I applaud you. But without apologies, after 16 years of being what I am now almost certain I have been misdiagosed as IBS, I am going for the drugs--in a big way. I requested a trial of Entocort and the GI politely complied.

He gave me 4 bottles w/6 tabs. each. Enough for 8 days, which he also kindly mentioned that that was about a $300US "gift".

Although I had a migraine for the 1st 3 days that slowly mitigated to 0 by day 4, I have to say I have felt the best, most human, most clear headed, most "normal" than I have in SEVEN YEARS.

I went to a 2 1/2hr concert--and made it thru it. I went on 2 90 min. seminars w/o bathrooms--no problem. I even ate out 3 times, still easily satieted, and felt a little full for a while, but, wow. Had 2 relatively shortlived D episodes, but nothing compared to before and no nausea. I even went for a walk in the park...I couldn't have done that a week ago.

I am just now realizing just how dramatic my downhill decline has been over the years. It often took me all day to do something so simple most people take it for granted.

I feel like I have truly been given another chance at a life worth living. The Dr. described the 3 types of health problems: 1, the kind they eventually figure out, but it will kill you; 2, the non-fatal diseases that affect your quality of life so much that you wish you would die and 3, the "functional" syndromes that they just don't know what to do with, but you still feel like s--t. I think he's eliminated 1 and 3, I hope.

Now my problem is how to pay for all this. The cost for a month of Entocort is over $1100US. I have only been able to buy 2 weeks worth so far as we already pay $780/mo. for the health insurance premium that is supposed to be helping.

I have looked into the offshore supplier mentioned in one of the other med. posts, but somehow buying meds from Vanuatu sounds a bit unnerving, but the sure is a savings. Does anyone (maybe you ladies downunder) have any experience with this company?

We also live near the Canadian border and will consider going to Mexico if necessary, so will explore those avenues as well.

Any and all help/information would be greatly appreciated. I have been too sick to work the last years and my husband was in construction, so you can imagine we are not in a good position to pay thousands and thousands/month just to keep me going.

Again, as always, thanks to all you who post and reply and give the rest of us timely and critical information to help us back to health.

Tex, you are one amazing guy. And to those experiencing flareups, I am thinking of you. The only thing that got me by was gingerale.

Regards,

Robin


P.S. What are the penquins about?

[tex]

Hi Robin,

As I sometimes say, the difference between IBS and MC, is often just a set of biopsy samples from the colon.

Congratulations on discovering how to get your life back. It's impressive that you responded so positively, and so promptly, to the Entocort. I hope it continues to work for you, (and there's no reason to doubt that it will).

As far as we are aware, the two sources mentioned in this post:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10825

are the only "affordable" sources for a reliable product containing budesonide. Entocort from Canada is a little cheaper than in the U. S., but not enough to make it affordable. I have no idea what's available in Mexico, but I would be concerned with quality, if it were offered at a reasonable price, (unless their source is one of the two mentioned in that post).

We have two or three members who have ordered from the first source, (I believe that's correct), and outside of having to allow a significant amount of time, (several weeks, because the shipment has to go through customs), the product seems to be effective, and the service is reliable. Personally, if I needed the product, I wouldn't hesitate to order from them, myself, because the price makes it a no-brainer. With a lot of insurance companies, the copay is much higher than the outright price from the overseas source.

The penguins are simply an approximate indication of each members accumulated post count. As your post count increases, the number of highlighted penguins will increase, (and the type of penguins, will change).

It's good to hear that the migraine went away, because a certain percentage of us are intolerant of Entocort, and the neurological symptoms can be severe enough to require that the use of the drug be discontinued.

Tex

[JoAnn]

Hi Robin, I ran into the same expense problems with Entocort, but have found a good solution by ordering the generic entocort (budesonide) from Canada Drug. I think I paid $65 for 100 capsules. I faxed my dr's script to them. You can do it by phone or online. It took about a week to get. I also ordered from Alldaychemist which doesn't require a prescription just to see if it was the same product. You don't need a prescription to order from them. It's one of the pharmacies Tex mentioned. I think I paid $70 for 100 and it is the same generic as the Canada brand. It did take a few weeks to get. I have found that the generic works just as well for me as the expensive name brand Entocort does. I hope this helps you, JoAnn