Budesonide ? Anyone on this ? Good success?

[NancyStrader]

Hi everyone:

I just found this forum today, anyone ever been treated with a medication called : Budesonide?

My Specialist has just put me on this as a maintenance drug and to calm a flare back into remission.

Tks
Nancy

[KLeo245]

Hi, Liz, thank you for your reply!
I am studying in UMDNJ. I am not very fresh; I had my own practiceoutside the US for 4 years. But I am still not as clinically experienced as your physicians, I know this. Therefore I don't like to advice treatment choices, even on forums. But you are a special case. I feel that you are very positive person and want to help you somehow!
I was searching internet for interesting cases, advances and colonoscopy pictures of Crohn's and saw your forum the first time.
I had several ladies with osteoporosis. It is very bad disease. I am very afraid of fractures of the spine. I hope you will never get it.
It seems to me, that you should have a consult with hematologist about your MCV. May be, folic acid is not absorbed in your intestines due to inflammation. I am not sure about this, but try to get folic acid as a subcutaneous injection.
I don’t want to go in gastro, but oncology and immunology are very attractive for me.
Best regards, Lysa.

[lizziecee]

Hi Lysa - how kind of you to come onto the forum to share your knowledge. I appreciate your kind, caring words.

I have had Vit B12 deficiency for over 25 yrs and have monthly B12 shots at my GP's office, and my level is fine now. I have been taking daily folic acid since being on mtx - 7 yrs now. Gastro amazed I have been able to tolerate mtx for so long without signs of liver toxicity, which is a common side effect. I had to get lucky sometime!

You are correct in saying that 4 yrs of  Arimidex has exacerbated the bone density loss due to 30+ years of prednisone. I stopped Arimidex 4 weeks ago because of severe left hip and foot pain .......miraculously now gone. I just didn't connect the dots and thought the pain was due to osteo arthritis, which was dx by a bone scan 2 yrs ago. Saw my GP last week and he is referring me to a new Oncologist (mine retired last year, but hadn't seen him since finishing chemo and rads in Feb 2004) for evaluation. Hopefully she can prescribe Femara or Aromasin. I don't want tamoxifen as it is an old drug and does not have the same positive prognosis for non recurrence as the AI's.

Regarding elevated MCV and MCH levels, my gastro says this is to be expected when on mtx and is not concerned. He is young, passionate about IBD, incredibly intelligent and up to date with research and trials, so I trust him implicitly. He had worked in a leper colony in Africa, and treated Aids/HIV patients in a large London teaching hospital before deciding to get into gastroenterology, which he feels is the most exciting field of medicine at the moment. Duh?   Feel very fortunate to have a gastro who cares so much about his patients. Told him if he moves away from the South West, he had better find an apt for hubby and I, as I will follow him!   Just joking!

Where are you studying Lysa? Do you intend to make gastroenterology your specialised field?  How refreshing to find a young woman willing to find time to help patients on the internet. Hope your halo is spinning today!

Take care,
Liz.

[KLeo245]

Dear Liz, I'd read your previous post from June 27, 2007. I looked for you to say that your osteoporosis may be induced by anastrozole. I hope that you will be free from any fractures in the future. I wish you find the right choice.
Regarding inflixmab, it is also good as well as budesonide for different courses of Crohn's. PPD should be negative before Infliximab Tx.
About your MCV, it is higher that it should be. It may be Vit B12 deficiency b/o  ileitis or folic acid deficiency. MTX decreases folic acid.
Hope for the best.
Yours,
Lysa, student doctor.

[lizziecee]

Absolutely agree that budesonide only works in the small intestine. When I was prescribed it, some 12 yrs ago, my gastro didn't really understand that I had pan Crohn's Colitis - 2 weeks after him prescribing this for me I went to visit friends in Florida. Had a huge flare and rectal haemorrhages and was hospitalised for 5 days - took me 9 months to get the travel insurance company to pay for the $15,000 in-patient treatment, with IV steroids and blood transfusions. Spent a miserable New Year's Eve in a high dependancy ward.  That was when the colonoscopy/endoscopy tests showed I had pan Crohn's colitis.

It is interesting that you mention Imuran and remicade - current, brilliant young gastro will not, under any circumstances, prescribe either of these drugs for me. I don't know if he prescribes them for his other patients, and he probably wouldn't tell me even if I dared to ask.  Steroids of some 30+ yrs have been a nightmare for me with bone density problems - I even got steroid induced pscyhosis when dx with breast cancer in 2003. Gastro will not prescribe them anymore. I found methotrexate in desperation on the internet some 7-8 yrs ago, and am doing well, although this med can have very serious toxicity to the liver. But, even aspirin can induce anaphylactic shock, as one friend of mine has suffered twice, being allergic to it.  As my gastro has recently explained to me, every drug has side effects, and it is my ultimate decision to weigh up the risks of the meds, being informed by my doctors, or suffer constant relapses. I chose to take the risk of methotrexate, but do find comfort in that I get comprehensive monthly blood tests, and although my MCV and MCH blood parameters are out of range, my gastro is comfortable with them. I have monthly B12 shots because my Crohn's has affected my terminal ileum, the only place in the body where B12 is metabolised.  I have read that lymphoma is also a side effect of methotrexate, but if I worried about every side effect listed for Crohn's and my breast cancer, I don't think I would be here now, answering this post. Guess we all have to make our own decisions, and weigh up the risks and ultimately take our chances. I have found it difficult at times deciding what meds to take, but rely implicitly on my instincts as much as my doctors.   I do my research, talk to my doctors, then decide what to do, and fortunately, still here and living a good, if curtailed life.

Take care all,

Liz.

[SMS_IRL]

Because of the way it works it is suitable for inflammation in the small intestine [not the Colon]. When my crohn's was confined to the small intestine it worked a treat. Unlike other steroids - for most people - it has minimal systemic effects because it is processed by the liver on the first pass. This is why most people tend to have less side-effects and that is why it is used in inhalers for long-term use by asmathics.

For those who are concerned about the other steroids - it needs to be remembered that all drugs for crohn's have serious side effects including the potential of many to promote  and initiate cancers [Imuran, remicade etc.].

[yooeriiin]

I was given Budesonide when i had a flare up but now i am on it to control the flare up since im not over the last one i had. I will be off it in about 4-6 months.