Compounded budesinide

[Sheila]

I ran into a woman I know casually yesterday at Whole Foods. She and I commisserated a few years ago when I was newly diagnosed and she was trying to figure out what was wrong with her digestive system. I told her about my GI doctor and she did eventually see him. She was diagnosesd with MC and, like most of us, couldn't afford $1,600 a month for budesinide. Doc sent her to a compounding pharmacy in town and they made budesinide for her for $85.00 for 90 tablets!!! I don't know if the drug is off patent or how my doctor got around those ornery patent laws. He also told her about getting the drug from the Canadian Pharmacy we both use. He, of course, told her that MC had nothing to do with what she was eating. He told her that the problem was caused by what happened when the food got to her digestsive system.

If it is possible to buy budesinide from a compounding pharmacy for $85 for 90 capsules, sign me up. I have an appointment so see my Doc at the end of the month and will definitely question him about getting my budesinide locally. Of course, first I have to convince him to let me keep taking it.

Sheila W

[tex]

Hi Sheila,

Yes, AstraZeneca's patent on budesonide expired (back in 2011, if I recall correctly), but I didn't realize that compounding pharmacies could sell it at that price level. And of course they make a profit on their work, plus at least a 40 % markup on the material, I would assume, so their acquisition price has to be downright surprising. That definitely appears to be the way to go. Good for your friend's doctor for bringing that option to her attention (even if he is lost when it comes to treating MC. LOL).

There has to be a valid reason for compounding a medication, and the reason is noted in the doctors prescription, so don't forget to ask for a prescription to have it compounded when you see your doctor. With MC, the obvious reason is a possible sensitivity to one or more of the inert ingredients, but if your doctor doesn't believe in food/drug sensitivities, maybe he can come up with another reason. Cost would seem to be an obvious reason to me, but I'm not sure that's allowed — surely Big Pharma has figured out a way to prevent that sort of workaround, to keep patients from evading their outrageous prices. (But I could be wrong.)

Thanks for sharing that valuable information.

Tex

[Leah]

Did you tell your friend about this forum? She should definitely get on board with the diet, or she will likely flare when she is out of Budesonide Rx.

leah

[Sheila]

Yes, Leah. She worked at the Gardens Mall in my favorite women's clothing store and I would see her there occasionally. She was terribly sick at the time and I told her about the Potty People, gluten etc and gave her the name of my GI. She did go to Dr. Stein and got the diagnosis. I told her when I saw her this time that the budesinide would stop working if she didn't stop eating whatever it was that was causing her MC. I suggested a food diary and an elimination diet. Hopefully, she will find us online and take to heart what I told her. I emphasized how crucial it is for her to find her food intolerances and eliminate them.

I think of my mother who did not give up gluten after her Enterolab results came back and suffered with WD and dermatitis herpetiformis despite taking budesinide. She finally gave up taking it because it wasn't working at all. She called her house, "The House of shi*", and it was an apt description. I felt so sorry for her. A year after she died, I started with MC, a family legacy.

Sheila W

[UkuleleLady]

She was diagnosesd with MC and, like most of us, couldn't afford $1,600 a month for budesinide. Doc sent her to a compounding pharmacy in town and they made budesinide for her for $85.00 for 90 tablets!!!

Sheila,
This is great news for anyone who has MC. Thanks for sharing.
Nancy

[DJ]

http://www.universaldrugstore.com/medic ... Budesonide
The above link brings you to a site that shows Astrazeneca Budesonide 3mg 100 tablets for $210. The are manufactured in
Europe. If you scroll down on the site, it's the 9th box.

I have not researched the site. Just letting you know it's there.

[wmonique2]

Sheila;


Here's a link for you: budesonide 3 mg 100 caps $63.00

Canada Pharmacy
http://www.canadapharmacy.com/index.cfm ... d/1506.htm


I don't think you can find it any cheaper anywhere else.

Monique

[Sheila]

Thanks, Monique. That is cheaper than the one I use by quite a bit. I am seeing my GI in a few weeks and will get the straight poop about the compounded budesinide. I know there are people who are concerned about receiving drugs made in India and other countries. Getting it compounded here would be good for those people. FYI, I haven't had a single problem with any drug I've ordered through Granville. In fact, my GI doctor gets drugs for his mother from them.

I'm still at 3 mg every third day but not feeling so great any more. I am deleting some of the more questionable items I recently added to my diet, i.e. Van's waffles. chicken boxed butternut squash soup I've spent the last week making safe food for the freezer and kicking myself in the butt for straying from the straight and narrow. I really hate this disease.

Thanks, again.

Sheila W

[wmonique2]

Sheila,


I am not the least bit concerned about drugs made overseas. Most generics are made overseas whether you buy them here or there.

I don't eat any of the GF products like Van's waffles because of the xanthum gun or guar gum in them. I always react to that stuff. I don't eat any processed foods anymore. I make all my soups...well you know the drill.

I hope you feel better soon. I had one hellish of a month. I just got over it a week ago. I join you in your hatred for this disease.

Take care,

Monique

[tex]

Sheila,

I'm sorry that your symptoms are coming back, and I hope that tightening your diet will get you back on track quickly.

I'm sitting here bloated as I type this post. It could be because I decided to add a couple of "new" spices to some homemade chicken soup. But I also made the mistake of refrigerating the leftovers, rather than freezing them. Since the bloating is much more noticeable now than it was after eating a bowl of it right after it was finished (2 or 3 days ago), and I'm even having a few episodes of acid reflux now, the histamine effect may be the main problem. I reckon I'll throw the rest away, and freeze it next time. We live and learn (usually the hard way, unfortunately).

I used to eat Van's waffles. They're very good, but if I recall correctly, the reason I gave them up was because they contain soy.

I agree with Monique about generics made overseas. All the biggest manufacturers offer drugs made for them in those distant countries. And just because they make some of the pills here in this country doesn't mean that the ingredients originated in this country. Ingredients are far cheaper overseas. The only significant difference between buying them there or buying them here, is the price, and that difference is huge for most of them.

Tex

[Leah]

I THINK THEY DO HAVE SOY IN THEM. I KNOW THERE IS A REASON I DON'T EAT THEM EITHER. When I want something like that, I make King Arthur's pancakes ( the best mix). If you measure out a 1/2 cup mix and add an egg, 1Tbsp. oil, and just enough almond milk to make a smooth batter, it makes about three good size cakes.

Yeah Tex, I know that story well. Left overs are tough sometimes. My rule is no more than 24 hours -especially if it has protein.

Sheila, making butternut squash soup is really easy if you can find the squash already cubed. I get it at Trader Joes. I just sauté some onions and garlic, add two bags of squash, and enough chicken broth to cover the squash. I don't know what spices you can do, but I also add ginger, SALT, PEPPER, and curry. Once the squash is cooked, puree it and then add some coconut milk. DELICIOUS.

Leah

[tex]

Yeah Tex, I know that story well. Left overs are tough sometimes. My rule is no more than 24 hours -especially if it has protein.

The thing is, I've been smugly thinking how lucky I am to not have histamine issues. I normally freeze all my leftovers, so the problem virtually never shows up. Apparently I just never had given it a good test. A low refrigeration temperature is not a solution, because that refrigerator is set to maintain the temp at 34 degrees. So obviously deep freeze temperatures are necessary to prevent histamine development.

And yes, the D was right on schedule, in case anyone is wondering. Now I'm beginning to wonder if we all might have a histamine problem. Some cases are obviously worse than others, but I have a strong hunch that none of us are exempt.

I agree about the King Arthur Flour pancake mix. It's good stuff. I have to add more almond milk than the label calls for though, because Silk Almond Milk at least is relatively thick, and the batter will be way too thick if I don't add more liquid. Even a third more is barely adequate, and the pancakes take much longer to cook than they should. The flavor and texture are great, though. Maybe I'll try adding some water next time, in place of extra almond milk.

Tex

[Sheila]

Yes, Leah, most of the Van's waffles have soy except for the Ancient Grains variety. They are SO good and SO gone. My homemade butternut squash soup is delicious but I was hoping for at least 1-2 easy (non-homemade) meals. We have a Trader Joe's coming in a few months and I'm really excited about it. Just pealing and chopping the butternut squash is an ordeal because of arthritis in my hands. I bought the boxed soup when my right hand was in a cast after joint surgery.

Tex, re histamine, while I was eating the Van's Ancient grains waffles, I was alternating them with my usual morning fruit smoothy. When the weather got cold here for a week or two I didn't have the cold smoothie and ate the waffles. I noticed that my Rosacea had greatly improved but didn't think too much about it. When I stopped the waffles and added the frozen fruit smoothy back to my diet, the Rosacea came back. I did a little investigating and found that bananas are high in histamine and also a known trigger for Rosacea. On the other hand, my bloat and gas problems are much less when I have the smoothie. As I said before, I hate this disease. You can't win for losing.

Sheila W

[Leah]

Great news about Trader Joes coming. They also carry cauliflower in bags pre-cut ( I sometimes add that to my soup also. One product they carry that I love is their light coconut milk. No additives and it's smooth and creamy enough to use as a creamer in ( de-caf) coffee, but I also use it when I cook white rice and of course, in my squash soup. I think you will enjoy having one close by :)

Leah

I just asked Tex to post an article on histamine intolerance that I received through Chris Kessler's web site. It really does a great job of explaining the whole thing. I still can't figure out how to post a site ( eye roll). I'm such a computer dummy.

Leah

[tex]

I used to love Van's Blueberry Waffles (which do contain soy — the Ancient Grains Waffles do not). I never came across the Ancient Grains version back in those days, but maybe it's a newer product. The most worrisome part of Van's Waffles is the sheer number of ingredients. For example, if I didn't miscount, the Ancient Grain Waffles contain 28 ingredients. That automatically places them in a high-risk category, because at least a couple of the ingredients (millet and quinoa) are notorious for cross-contamination risk. And many of us are sensitive to tapioca, for some unknown reason.

That's interesting about the bananas and Rosacea. Back when I was recovering, I used to always put frozen bananas in my smoothies too. They may be the main reason why I finally had to abandon my smoothie machine. Back in those days I had never heard of histamine problems in food, unfortunately. I just assumed that the problem was the fiber and sugar in all the fruit.

Tex