Yet another new GI, questions about Entocort use.

[bevfromwa]

The last GI prescribed 2 Entocort a day for 30 days, dropped me to 1 a day for 30 days, but then refused to prescribe any more out of concern for my osteoporosis. I think we covered all this in my March and July posts. I asked my PCP to authorize a 2nd opinion--I did the research on 25 GI docs in my area that my insurance would cover. Narrowed it down to 2, saw one a month ago, quite businesslike, almost brusk. But she had access to my records and did agree with me that I wasn't given the proper dose. She prescribed 3 months of Entocort, enough for 3 a day for that time. But no refills. I have been unable to find out what her plans are, but see her this week for a one month follow up (actually it's closer to 3 weeks)so hope to find out. I no longer have watery D, but definitely not formed, more soft serve. So that's progress, just want to make sure I maintain it. I'm hoping she'll allow me up to the full 3 months if necessary, then authorize a sensible taper.

Does anyone have a ball park guess of how many of our group have taken this med? From reading posts since 2009, I'll bet hundreds or more. And there have been a lot of success stories. That might lend credence to our discussion.

This is my 4th GI, can't say I've had terribly good luck!

Thanks for any input.

Beverly

[jessica329]

I took it twice. The first time, it worked. I started on a low dose of Lialda while slowly weaning off Entocort. I eventually weaned off Lialda. 2 years later I went back on Entocort. It did nothing. Went on Lialda and that helped. I stayed on Lialda for a few months until my insurance dropped coverage for 90% of the IBD meds. I have not been on anything since July 2017. Currently trying to get a flare under control.

[bevfromwa]

thanks for that info, Jessica. This further confirms that it doesn't work as well in subsequent doses as it did the first time around.

I saw the new GI again and got a little more info on the taper. She wants to see me in 6 weeks to monitor progress and discuss a taper. However, I will have only 75 pills left at that time and I'm doubtful that it's enough. I think she wants to do 2 a day for 1-2 weeks, then 1 a day for 1-2 weeks. I'd have enough pills for that but don't think that's enough time to be successful.

Tex, if you're reading this, you mentioned that you know of a less expensive source. Is that All Day Chemist? I used them a few years ago and seemed to be ok. Think I'll need to resort to that if I need more pills, which is likely whether the Dr. knows what I'm doing or not!

Thanks, Beverly

[tex]

Hi Beverly,

Yes, that's the place. Canadian pharmacies sell the same product, but they mark it up 40%, and they require a prescription.

Tex

[brandy]

Hi Beverly,

Mayo has some studies out that they are ok with long term use of budesonide. If you click around on the gastros drs names on
their web site you should be able to find several studies if you need to bring a study to the doc.

Whatever you do stay on budesonide as long as you need to, i.e. don't rush things. It sounds like you are making progress
if you are at soft serve.

My take on the osteoporosis stance is that untreated long term watery D has got to be pretty bad for bone density as we
are not uploading nutrition into our bodies.

Brandy

[Kilt]

Yes, that's [All Day Chemist] the place. Canadian pharmacies sell the same product, but they mark it up 40%, and they require a prescription.

All Day Chemist says they require a prescription for prescription medications. I get budesonide from this "Canadian" pharmacy, GlobalCareRx, which has better prices for budesonide than All Day Chemist and a lower shipping charge. For 250 capsules of Budez CR from Sun Pharma in India, the same product that All Day Chemist provides, I pay $120 plus $9.99 shipping. My first batch arrived in 11 days and the second batch in 13 days.

GlobalCareRx does require a prescription, but since you simply email/fax the prescription to them, you can email/fax the same prescription to other "Canadian" pharmacies while still holding the original, and even using the original in a U.S. pharmacy, until it expires.

Many of the "Canadian" pharmacies are actually the same company using different internet storefront names, and having different prices, so you probably wouldn't want to email the same prescription to two of those. It requires some gumshoe research to figure this out.

Maybe I'll just start a thread on my research and experience with "Canadian" pharmacies, which I keep putting in quotes because their connection to Canada is tenuous. With GlobalCareRx you talk to (very informative) reps in the Philippines, and the budesonide comes from India via Shanghai.

[tex]

Hi Kilt,

All Day Chemist says that they require prescriptions, but that's just a feel-good comment for the benefit of those who feel that it's important. In fact, they do not require a prescription. Also, in Beverly's situation, this is important, as she does not currently have a prescription.

Thanks for the information on GlobalCareRx. That is indeed a better price. I'm sure that some members may want to consider using that option.

Tex

[Kilt]

Well, if someone doesn't have a prescription, that's a different story.

I tried a fake order with All Day Chemists to see if they actually require a prescription, but I faked myself out by giving a fake email address, so I don't know whether they asked for the prescription in the follow-up email.

Has someone actually reported here getting budesonide recently without a prescription, and was that person in the U.S.? It is technically illegal to import medications into the U.S., but the FDA has decided not to enforce those rules under THIS POLICY, which requires written proof that the medication is for personal treatment in a quantity not to exceed a three month supply. As a practical matter, this means a written prescription from a doctor. If there is no such proof in the imported package, it may be seized and confiscated when opened by U.S. Customs, and the U.S. buyer won't get the drug and lose the money paid for it. To prevent this, GlobalCareRx includes a copy of the prescription in the package. They seem to be a very honest, legitimate and price competitive company.

If posters can get a prescription for X amount of budesonide, they can leverage it via digital transmission to multiple overseas pharmacies into perhaps a 5X amount, and not have to worry so much about a stingy or risk averse GI doctor. I'm not advising this, but just pointing out that it's a practical possibility in the age of the internet and digitized prescriptions, since I believe we should all be our own decision-makers in the end.

[tex]

Sure there are several if I can find them. This may be a bit like looking for a needle in a haystack, but here's one thread.

Budesonide EC Price!

Here's an old one:

Positive experience with alldaychemist

Here's another:

Entocort Price Increase

As long as you don't order more than a 3-month's supply of budesonide (270 capsules), Customs will let it fly right through, with or without a prescription.

It doesn't matter whether AllDayChemist asks for a script or not, you do not need one to receive your order. My experience is that they will usually ask for a prescription, but whether you actually provide one or not, doesn't matter. It's just a feel-good gesture.

Tex

[Rosie]

Three months ago in June, I ordered a 3 month supply of budesonide from AllDayChemist without a prescription. I have ordered other prescription items from them a number of times, and have never needed to provide a prescription. You just ignore the request for a prescription, and they never ask for it. The order arrived in about 2 weeks. And AllDayChemist states that they won't charge for an order that is held up. Here is a quote from their web site.

If for any reason your order of prescription drugs is not successfully delivered, we will of course reship free of charge or provide you with a 100% refund as per our satisfaction guarantee.

Rosie

[tex]

Thanks a million for sharing that. There's nothing like the voice of experience to settle a question once and for all.

Tex

[tommyboywalker]

I too have had a positive experience with AllDayChemist a few months ago for Budesonide (mfg by SunPharma / India) No prescription needed even though I have a valid one.

My order was at my door in about 2 weeks start to finish. I did a lot of research to vet AllDayChemist as best I could and found no reason not to use them. But as already mentioned, I would not recommend ordering over 270 capsules (3 month supply at 3 per day). Over 270 may raise a regulatory flag; not sure about that but no reason to take the chance as you can always order more down the line. I am doing well on a very slow Budesonide taper so 270 capsules will last me quite a while!

U.S price was thirteen times more than the price of AllDayChemist. And that is the price WITH Medicare Part D prescription insurance. Thirteen times more!! The price of this drug is ridiculously expensive in the US. For many of us, it's look for places like AllDayChemist or not take the drug at all.

Pretty easy decision for me to make. I wish you all the best!

And a special thanks to Tex for this forum and all of you for your help and information regarding all things MC!

[tex]

Thanks for sharing that. Many members will benefit from that as time goes by.

Tex