Hi Cory,
I agree with Gloria and Tex Brandy
Back on Budesonide again.
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Everyone here has handled Entocort pretty much the best way for them. I've done it every which way but I will have to check out the clinical trial way. Thanks for that link.
And FWIW, I've tried tapering to one Ento every other day- once it was one every 3 days when on Friendly Flora - but I always seem to need to go back to one a day after 5 or 6 weeks. As someone wisely said, why suffer? I don't have a very good copay but it helps a lot so I'll pay for it.
Has anyone tried the Mylan version of Entocort? It has different fillers but I suspect it's far less expensive than the AstraZenica.
And FWIW, I've tried tapering to one Ento every other day- once it was one every 3 days when on Friendly Flora - but I always seem to need to go back to one a day after 5 or 6 weeks. As someone wisely said, why suffer? I don't have a very good copay but it helps a lot so I'll pay for it.
Has anyone tried the Mylan version of Entocort? It has different fillers but I suspect it's far less expensive than the AstraZenica.
Also have sleep apnea
Cory, so sorry you are having issues. I can relate to your situation, it is so frustrating when there is no control. I'm taking 3mg of budesonide daily and have minor sleep problems. Prior to the budesonide I took a long course of prednisone which cause numerous horrible side effects for me. I've never slept the same since then. I regularly woke up at 3AM and felt like crap all day long. I still rarely wake up feeling refreshed but am better than before. I find now I wake up every morning around 2 AM and cannot get back to sleep because of my husband's snoring. The only way I can sleep is to put earplugs in when I wake and then I can sleep again. Compared to the disaster of no sleep, I've come to accept this as the norm for me. Each pair of PJs that I have will have earplugs in the pocket. I also get hot flashes at night so I frequently slip out of the bottoms and stuff them above my pilllow so I have easy access to the earplugs. Sadly enough, I also get chilled so I'm always putting on and taking off layers. There's a colony of socks at the end of my bed since I'm dressed like an eskimo when I go to bed, turn into a fireball in the early AM, then get chilly again a few hours before my alarm goes off. It's amazing my husband even gets any sleep.
Even on the budesonside I have a limited amount of time to get the bathroom when I get the urge. I don't have watery D anymore but still have to been conscious of whose in the bathroom and my husband and son know that when I have to go they need to move out quick even if it means with a mouthfull of toothpaste. I feel like such a burden and hate to always interrupt but with one bathroom in the house I don't have a choice.
Please don't feel like a failure- we're in the same boat. I have a burning desire to control this monster through diet alone and am taking a long time to heal. I still hope I can, and will give it a try, but if the budesonide has to be a part of my life I've come to accept that may be my only option since I will not go the prednisone route again. (keeping my fingers and toes crossed that I won't have to eat those words someday)
Even on the budesonside I have a limited amount of time to get the bathroom when I get the urge. I don't have watery D anymore but still have to been conscious of whose in the bathroom and my husband and son know that when I have to go they need to move out quick even if it means with a mouthfull of toothpaste. I feel like such a burden and hate to always interrupt but with one bathroom in the house I don't have a choice.
Please don't feel like a failure- we're in the same boat. I have a burning desire to control this monster through diet alone and am taking a long time to heal. I still hope I can, and will give it a try, but if the budesonide has to be a part of my life I've come to accept that may be my only option since I will not go the prednisone route again. (keeping my fingers and toes crossed that I won't have to eat those words someday)