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Carol Arnett
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Post by Carol Arnett »

Good morning, everyone.
This is Carol's daughter Lori, posting an update on Carol at her request.
Mom has been hospitalized for 3 weeks due to a severe flare and malnutrition. She is being treated with TPN, Ocreatide (which is now beginning to be tapered) and Entocort EC. She is doing well and is expected to be hospitalized for another 10 days to 2 weeks.
Carol is going to require Entocort for life once discharged. She has no prescription insurance and I have diligently researched every possibility regarding prescription assistance, of which I have found none. The only possibility is the utilization of a Canadian pharmacy. Does anyone have any suggestions about how we might find assistance with Entocort? We would appreciate any input you might have.
I will pass on any messages you have for Carol. Thanks!
Carol Arnett
ant
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Post by ant »

Hi Lori and Carol,

I am so sorry about the severe flare and malnutrition. I pray the symptoms settle down quickly.

Entocort is so expensive. (I also do no have prescription insurance, which shocked me when I realized). As a Brit living in Hong Kong I am not sure I can offer any good ideas....perhaps the European equivalent product, Budenofalk? But, I doubt that can be got in USA....

I am sure others will have some thoughts.

All my best wishes, Ant
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Post by harma »

If there is a price difference Budenofalk will be cheaper, here in Holland the policy is that doctor's don't prescribe brand medication but the compound that does the work. Most of the time you get generic medication instead of the original brand.To keep the costs as low as possible. Down side is you maybe not always get the best medication, good thing is, I don't have to pay for my pills. I found an internet site for you where they sell budenofalk and entocort. You can also compare prices, maybe it is useful website: http://www.pharmacyescrow.com/s4922-s-ENTOCORT.aspx
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Post by Rosie »

Lori, is Carol over 65? Is she signed up for Medicare? The Annual Enrollment Period for Part D (Prescription Drug Plan) is Nov. 15- Dec. 31 and would start coverage Jan. 1. This could help a lot, but of course not cover the entire cost. If she is 65 or older, I can provide you some help in sorting it out, as I am a trained volunteer Medicare counsellor and work with seniors on Medicare issues. It can get a bit complicated. If you are interested in finding out more, you can pm me and I'll see what can be done.

Rosie
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Jan
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Post by Jan »

Lori,

I hate to say if your Mom isn't over 65 there isn't any help available. Some Drs. will use samples to help out patients. I know of one other member whose Dr. refused and she couldn't afford the prescription either. Several of us looked at that time to see if there was any prescription assistance. I wish I had better news for you. Canada may be your best bet.

Tell her we all hope she gets better soon.

Jan
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Post by Dee »

Please tell Carol that she will be in my thoughts & prayers!
I figured something had to be taking place when not seeing her post for a while.
I'm going to check out a website that my hubby used after his prostate cancer surgery to see if they list Entocort EC. Will post if I have good news!!

Dee~~~
"What the heart gives away is never gone ... It is kept in the hearts of others."
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Post by Dee »

Hi Again, Lori!
Check out this site. http://www.alldaychemist.com/
If I figured correctly including their shipping on a months supply would be around $100 a month for the Entocort EC.
There brand would be 45 cents for 1 capsule, and here in the US we pay $4.35 for 1 capsule... Now, I don't know if there is a limit that you can order. You'll have to investigate that on the site.
Under the US Brand just type in Entocort EC...
We have ordered Cipro from them and other meds for hubby. The meds worked equivalent to what we get here.
Hope this helps..

Dee~~~~
"What the heart gives away is never gone ... It is kept in the hearts of others."
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tex
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Post by tex »

The manufacturer of Budez CR 3mg is Sun Pharma, in India:

http://en.wikipedia.org/wiki/Sun_Pharmaceutical

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Dee »

Yep!
That's correct Wayne!!!

Dee~~~~
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Post by ant »

Wow! that is amazing information! Ant
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angy
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Post by angy »

Hope everything works out for carol..good luck with the meds..x
Angy ;)
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Post by JLH »

Sorry to hear about the flare. I hope Carol feels better very soon. Is she doing "the diet"?

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LDN July 18, 2014

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Post by Gloria »

Lori,

Send Carol our best wishes for a speedy recovery. I hope she can find a suitable (and cheap) resource for Entocort.

Gloria
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tex
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Post by tex »

Lori,

If you're reading this thread, I sent you an e-mail, (using an address for you that Carol gave us several years ago, in case anything happened, and we needed a contact address), requesting the hospital address and room number, so that we can send flowers, and possibly cards. If you haven't received it, please let me know, because it contained some other information, regarding a possible supply of Entocort, that I didn't want to post on a public forum.

I hope that Carol is continuing to improve.

Thanks,
Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Carol Arnett
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RE: Carol Arnett

Post by Carol Arnett »

Thank you, everyone, for your kind words, well wishes and information. We have had no luck thus far in finding a source for Entocort and I believe we may use your resource, Dee.
Tex, i believe my email address was most likely incorrect. I have PM'd you (is that the correct verbage?!) with the information you requested.
Mom should be back on your message board by the end of next week. I have relayed to her all of your messages and I know it has brightened her day!
Thanks again for everything.
Lori Arnett-Beckwith
Carol Arnett
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