Just diagnosed with colitis...given Budesonide $$$$

I’m so glad!! It takes a village, don’t you know? 😁

I have Crohn's and my small intestine was full of tiny, blister-like ulcers and my dr. gave me budesimide. This is a steroid meant to deliver steroid straight to the small intestine. Does it work,? Sure as long as you are on it. For actual healing relief I discovered Low Dose Naltrexone. I am now symptom free and my last colonoscopy was "normal". Finding a dr who will supply a script can be a challenge but worth the effort. Start with your GI dr first. He (she) might be more progressive than mine is. Best of luck.

I am truly Happy for you. But my 2 month course of budesonide did the trick a year ago! I haven’t needed it since.

That is good news! Good to hear that it works for some like it is suppost to.

When I was doing my research before initiating Budesonide for microscopic colitis, The literature I read described Naltrexone as an FDA approved opioid antagonist that was in phase two trials for an off-label use in various GI inflammatory disorders. But it seems it was administered in the phase 2 trials I reviewed as an adjunct drug to other primary anti-inflammatory drugs such as anti-TNF like Remicade or other drugs such as Methotrexate. That was late 2022 so I don’t know where in trials for GI issues it may be, but suffice to say at this point I believe it would be an off label use.

And to clarify regarding your reference to prescribing guidance for budesonide, it is not only untrue that realized improvement requires staying on the drug, it is exactly the opposite of guidance, which recommends a roughly 8-12 week course, beginning with 9mg/day and tapering to ceasing the drug.

I have no issue with being a
cheerleader for a positive drug experience anyone may have had, but I do prefer that one takes care not to misrepresent another drug as part of the cheerleading.

You seem very well informed about many different subjects and obviosly you are an indepth researcher. I came to use LDN some time ago (before there was much to be found about it) out of necessaty. I had many symptoms and a dr who was making no suggestions. "If you can't be smart, be lucky" comes to mind. And I also got caught in the expense of Budesonide so I can relate to what they are experiencing. I don't suppose you are as well read bout Sjogren's Syndrome? I have several ideas I would like to run by someone knowledgable. Thank you for keeping us all up-to-date.

Thanks for the nod. I have background in clinical neurophysiology, and managed non nursing departments in a large Pediatric hospital - like radiology, laboratory, pharmacy, neuro, etc. - and I have lived long enough to have had my fair share of ailments. You are correct that I’m primarily a researcher -‘having had a career focus in regulator requirement testing. and outcome assurance.
I sympathize with where you found yourself relative to the apparent expense of Budesonide - Which today is easily circumvented thanks to discount pharmacy programs.

I will comment that a part of any drug success is patient confidence and their emotional investment in helping it succeed with diet and other patient driven activities - sleep, exercise,
Etc. So we should be slow to casually criticize an approved drug that could be someone’s hope to escape misery.

Sadly I know almost nothing about Sjogren’s. I know it can be treated with hydroxychloroquin because during the peak of Covid, the rumor started circulating that it was an effective antiviral. And people who really needed it - Sjogrens patients among them as I recall- had a supply crisis. I know it is an autoimmune disease affecting glands that secrete. And that’s about the end of my meager knowledge.
I’m willing be a sounding board but I would need to understand end use of my input.

Thanks
Pam

Hi @pb50 and @suetex, following your exchange underlines just how different everyone is. What may work for one, may not for another, even when sharing the same condition.

Allow me to post some resources.
- Budesonide
Here is information from Mayo Clinic about Budesonide (Oral Route) https://www.mayoclinic.org/drugs-supplements/budesonide-oral-route/description/drg-20073233
In the section about Dosing and Proper Use, it states "The dose of this medicine will be different for different patients." "Keep using this medicine for the full time of treatment, even if you begin to feel better after a few days. Do not miss any doses."

- Naltrexone
From Mayo Clinic
"Naltrexone is an FDA approved drug (for alcoholism) that has found widespread use "off-label" to treat pain and improve quality of life at much lower doses than are used for the approved indication. There are a few scientific studies in three conditions (fibromyalgia, Crohn's disease, and multiple sclerosis) that suggest that this drug has benefit and is safe. However, considering the extent of use in other conditions, and uncertainty about the mechanism of action study is needed in a diverse set of diseases, including vasculitis."

In fact, Mayo is currently recruiting patients for a phase 2 study looking into LDN for people with vasculitis
- Low Dose Naltrexone to Improve Physical Health in Patients With Vasculitis https://www.mayo.edu/research/clinical-trials/cls-20438025

Like Pam, I could only find phase 2 trials regarding use of LDN and inflammatory bowel. Thus any use of it in practice would be off label and under the supervision of a physician of course. 🙂

@suetex, you might wish to join these discussions with members talking about Sjogren's Syndrome.

All Sjogren's Syndrome discussions https://connect.mayoclinic.org/search/discussions/?search=Sjogren

You might wish to start here:
- Sjogren’s Syndrome – Introduce yourself and meet others
https://connect.mayoclinic.org/discussion/sjogrens/

Colleen, thanks for your input. Very helpful. I would bet there are a number of patients in this community who would be interested in the study you described.