Hello everyone. I am thankful to report that I am doing better! Did Enterolab testing so I know for sure which foods to avoid plus am gluten, dairy and soy free. Not easy! I am down to 3 mg per day of Budesonide (very slow taper from 9 mg) and finally convinced my GI doctor to give me a prescription for Cholestyramine & it took alot of convincing to not write it for the light version. After a few days of taking the Cholestyramine, my stool was normal!! After almost a year of struggling with daily D! But when I refilled my prescription, the brand changed and it now contains sucrose. I didn't notice at first, but within a few days I had stomach pains and the D was back! So I called the pharmacy and was told that they can't control what brand they get and it's likely to change. How frustrating! Has anyone else had this problem? I don't know how to get only the Sandoz brand, which is what Tex recommends. My stools are soft now, not D, but not normal. Could be related to stress (Covid, politics) as well as the sucrose, but I am so afraid that the D will come back. My stools also are back to being very sticky, requiring the use of ALOT of toilet paper, and coats the toilet (sorry for the grossness :) Maybe that is common with CC? Also, I was planning to continue the taper to 3 mg of Budesonide every other day, but now I am afraid to do that. On February 14 it will be one year of taking Budesonide and I really want to stop. My skin is very thin and I already have osteoporosis. Any advice would be so appreciated! I spend alot of time reading posts on this discussion board and have learned so much. Thank you to everyone who so generously give of their time and knowledge to help fellow MC sufferers!
Jeannie
Update and need a little guidance
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Re: Update and need a little guidance
Yes, yes and yes. I’ve been dealing with the generic cholestyramine thing for awhile. I will be back to making phone calls to Walgreens soon..
I’ve been able to reliably fill my 3 month prescription (that means 12 boxes since a I take 8 packets a day...) with Sandoz at CVS. Prior to getting prescription coverage a year and a half ago, my best bet was using GoodRx to pay it myself at CVS..so that was like $111 a month for 4 boxes ..
Unfortunately my work health insurance has switched back to Walgreens
and some mail order company called Optum. My HR guy at my hospital asked the Optum people if I would be able to get Sandoz as the generic..and their answer was what you got...NO! Because they get what they get basically..
My experience with Walgreens and getting Sandoz is hit and miss. More miss than hit unfortunately. I will be making a call to them soon to see if things have gotten better with their ability to get Sandoz brand. If not, I will have my PCP continue to call in my refills to CVS and pay out of pocket with GoodRx. Not ideal, but it is what it is.
Call around to different pharmacies and see who can get it for you.
Laine
I’ve been able to reliably fill my 3 month prescription (that means 12 boxes since a I take 8 packets a day...) with Sandoz at CVS. Prior to getting prescription coverage a year and a half ago, my best bet was using GoodRx to pay it myself at CVS..so that was like $111 a month for 4 boxes ..
Unfortunately my work health insurance has switched back to Walgreens
and some mail order company called Optum. My HR guy at my hospital asked the Optum people if I would be able to get Sandoz as the generic..and their answer was what you got...NO! Because they get what they get basically..My experience with Walgreens and getting Sandoz is hit and miss. More miss than hit unfortunately. I will be making a call to them soon to see if things have gotten better with their ability to get Sandoz brand. If not, I will have my PCP continue to call in my refills to CVS and pay out of pocket with GoodRx. Not ideal, but it is what it is.
Call around to different pharmacies and see who can get it for you.
Laine
"Do what you can, with what you have, where you are"-Teddy Roosevelt
Re: Update and need a little guidance
Correction....that $111 was when I was taking 6 packets a day...so it would have been 3 boxes a month for $111... my bad 
"Do what you can, with what you have, where you are"-Teddy Roosevelt
Re: Update and need a little guidance
Thank you Laine for your response. I will begin making calls tomorrow! I have a CVS not far from my house, so I will try there first! So frustrating to know that there is a drug that will help, but you can't get it. And then the cost! I paid thousands of dollars last year for Budesonide! Praying I don't ever have to do that again. Hope you can get what you need, Laine. It's hard enough dealing with MC without all the frustrations of medications. That alone will give us D!! 