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Hi, this is my story...well shortened!

Hi, I have had UC for 12 years now. I also have Sclerosing Colangitis, have had Gall bladder removal and DVT. I have been on Prednisolone for 12 years and tried ALL other medications available to me. I am allergic to sulfur so cannot take a few either.
Was recently tapering off Prednisolone (for about the 60th time) from 60mg now got d......own to 2mg and while on Azothioprine and Alipurinol. Have been very bad again for 4 weeks now (I've only been in "remission" about 5 times throughout the 12 years) and test results are bad again. Doctor is now wanting me to start on Budesonide. How did you go with this drug? Would love to hear other peoples stories please.
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Welcome Nixie! How long have you had the SC dx? My son has that also. He was dxed with it 1.5 yrs ago. Symptoms so far are enlarged spleen and vericese in the esophagus.

Sorry, don't know anything about Budenoside. Have you ever been tried on the biologics?
 

xJillx

Your Story Forum Monitor
Hi and welcome! It sure sounds like you are steroid dependent. Have you experienced any longer term side effects?

I don't have experience with Budesonide, but hopefully you'll do well with it. But has your doctor suggested a stronger maintenance medication, such as an TFN inhibitor?
 

David

Co-Founder
Location
Naples, Florida
Greetings and welcome :) I'm glad you found your way here though I'm sorry you're having a lot of trouble :(

Regarding the Budesonide,you may want to check our treatment forum for threads about it. It is often referred to by another name, Entocort. You can also use the "Search" button at the top of the screen to check for existing threads or start your own.

I wish you all the best. And again, welcome!
 
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