Bismuth vs. LDN vs. budesonide...best next step?

Lucy_B · Post by **Lucy_B** » Mon Oct 05, 2015 1:04 pm

Hi, everyone! Since the Lialda didn't work, I'm moving on to an alternate treatment plan (in addition to diet). My doc has made three suggestions and is leaving the call up to me: 1) 8 chewable bismuth tablets/day for 8 weeks (which I've actually never tried before); 2) budesonide (gold standard); or 3) LDN (this was something I asked about and he is totally open to it- says he has a few Crohn's patients using it successfully at the 4.5 mg dose). So....I'm at somewhat of a crossroads trying to decide what makes the most sense. I feel like budesonide would probably work the fastest, but I am concerned about cost (even with my insurance, it's like $300/month) and also side effects. LDN is definitely cheaper, but it doesn't seem to be as universally effective as budesonide. Then there's the bismuth, which sounds innocuous enough, but I recently read some reports on here of neurological SE's, including tinnitus? Anyhoo, I'd love to hear your thoughts/feedback. A few specific questions:

For those of you who have used LDN successfully, did you notice any SE's or withdrawal syndrome? Also, what dose did you start at and how quickly did you work up? This is the one I'm probably most interested in.

Bismuth freaks me out a little b/c I fear it'll kill some of the healthy flora. Can a probiotic be used at the same time as the Pepto? Also, have any of you noticed worsening yeast/fungal issues after being on bismuth for awhile? Are there any great bismuth success stories out there? :)

Really appreciate being able to tap into your collective experiences/expertise! I am so grateful I can come here and ask these questions.

(P. S. I recently tried Allegra and didn't notice any benefit after a few days. It just made me feel spaced out and jumpy, so I stopped taking it. Womp womp.)

Gabes-Apg · Post by **Gabes-Apg** » Mon Oct 05, 2015 2:41 pm

Lucy,
I have not used any of the three mess mentioned so am not able to comment personally on those...

Any med protocol has limitations on its success, depending on what eating plan you are following and what your Vit D3 level is.
Before making any med changes, have you had your Vit D3 level checked? Are you taking Vit D3. How strict is your eating plan?

I used the cholestramide when first Dx'd while I sorted out my diet... It worked well for me.

From what I have read in posts, LDN worked really well for a few, mostly those with multiple AI conditions.
There are a couple that it did nothing to help their MC alone.
Do you have any other AI issues?

The chewable bismuth, was something that it would work great for one person, and cause chaos for another.... We do not know the science behind why it works for one, but not for all...
In all cases with any medication, it is trial and error..... (The sucky part of MC, there is not one guaranteed solution)

Post by **tex** » Mon Oct 05, 2015 3:54 pm

Lucy,

The antibiotic properties of bismuth subsalicylate are very mild. Here's part of the abstract of the trial where it was studied for use in treating MC. The trial showed a 75 % success rate.

METHODS: Thirteen patients with microscopic colitis (7 with subepithelial collagen deposition and 6 without) were treated with eight chewable 262-mg bismuth subsalicylate tablets per day for 8 weeks. Patients recorded the frequency of bowel movements daily. Forty-eight-hour stool collections and flexible sigmoidoscopy with 24 biopsies were performed before and after treatment in each patient.

RESULTS: Twelve patients completed the trial. Eleven patients had a resolution of diarrhea and a reduction in fecal weight. The average time to respond was 2 weeks. In 9 patients, colitis resolved. When present before treatment, subepithelial collagen thickening disappeared. Those completing the trial experienced no side effects. Posttreatment follow-up for 7-28 months shows that 9 patients remain well having undergone no further treatment, 2 are well but required retreatment, and 1 has continued diarrhea.

CONCLUSIONS: Bismuth subsalicylate treatment for 8 weeks is safe and well tolerated. This regimen appears to be efficacious for the treatment of microscopic colitis and is worthy of further study in a controlled trial.

Efficacy of open-label bismuth subsalicylate for the treatment of microscopic colitis.

And a single case study to show that all medications carry risks:

Abstract

Bismuth subsalicylate preparations are over-the-counter products for gastrointestinal complaints. Bismuth toxicity causes delirium, psychosis, ataxia, myoclonus, and seizures and is reversible over several weeks or months, when bismuth intake is stopped. We report a 54-year-old man with a 6-week history of progressive confusion and memory difficulty and a 2-3-week history of involuntary movements and gait impairment. His encephalopathy was further characterized by marked multifocal myoclonic jerks, coarse postural tremors, postural instability, and gait ataxia. He gradually improved. Extensive toxic, metabolic, and infectious workup demonstrated bismuth toxicity. Spinal tap and brain magnetic resonance scan were normal. Electroencephalography showed bihemispheric slowing. As his encephalopathy cleared, he reported using bismuth subsalicylate long term (daily intake of 8 oz). Bismuth levels 5 weeks after cessation of bismuth were elevated and normalized after 12 weeks. He followed a typical course for bismuth toxicity with subacute progressive encephalopathy and gradual recovery. Creutzfeldt-Jakob was strongly considered due to his rapidly progressive encephalopathy, multifocal myoclonus, and ataxia. Due to its rarity, bismuth toxicity is often overlooked. We hope this presentation will increase recognition of bismuth toxicity. We believe more detailed labeling of bismuth products is needed to avoid similar toxicity from this readily available product.

Bismuth subsalicylate toxicity as a cause of prolonged encephalopathy with myoclonus.

Tex

Marcia K · Post by **Marcia K** » Mon Oct 05, 2015 5:42 pm

Hi, Lucy. I am a Pepto success story. My G.I. told me to take it 6xday for 8 weeks. After a few weeks I became C so I reduced the dosage to 4xday for the remaining weeks. I had no side effects from it (it can causing ringing in the ears for some people). After that time I eliminated gluten & dairy and then eliminated other foods as I did more research, read Tex's book and had testing through EnteroLab. It's been two years since my diagnosis of LC and I have been fine other than when I ate out and got glutened. My G.I. told me not to chew the Pepto because they would cause my tongue to turn black. I broke them in half and swallowed them with water.

Zizzle · Post by **Zizzle** » Tue Oct 06, 2015 5:42 am

Hi Lucy,
I take LDN and Pepto Bismol tablets (not chewables - I could never get them down). I started LDN for a related autoimmune disease years after fixing my diet for MC. The results were miraculous for the Dermatomyositis - I was in remission in 12 weeks. LDN was not quite a miracle for my MC, but it helped by decreasing my reactivity to foods and making me less sensitive overall. It also cured my persistent low mood, raised my very low BP, and gave me more energy and mental alertness during the day. I highly recommend LDN even if it doesn't fix your MC 100%.

I only take Pepto as needed now, like this week after I glutened myself with Cheerios over several days 2 weeks ago. I'm flaring and the Pepto really calms the pain, burning, and explosiveness. I've never been able to take more than 3 doses a day. Right now I only take 2.

In the example above, the guy was drinking a whole bottle of Pepto. Crazy!

Lucy_B · Post by **Lucy_B** » Tue Oct 06, 2015 8:32 am

Thanks so much, everyone! This is super helpful. Gabes, my vitamin D3 level is within the normal range, but on the lowish side. I do take 5,000 ICU daily and have for about 3 years now. As for diet, I'm currently off gluten, dairy, soy, oats, and corn. Recently removed eggs, as well. And am avoiding high fiber meals/excess sugar. Considering getting the Enterolab testing...just need to figure out a way to afford it. :) I do have other autoimmune issues, including high thyroid antibodies (pre-Hashi's) and recurrent miscarriages that several different reproductive specialists have attributed to some kind of nebulous autoimmune issue. I just seem to have a lot of systemic inflammation (high circulating TNF-a, chronic bladder irritation, etc.), which I'm hoping the LDN may help. Diabetes and arthritis run in my family, so I'm interested in prevention as much as anything else.

Thanks for the links, Tex!

Marcia/Zizzle-- Thank you so much for sharing your experiences! Did either of you do the Enterolab testing to determine your food sensitivities, or was it more just trial and error? Definitely going to give the Pepto a shot, I think. Did (or do) either of you take probiotics in conjunction with the Pepto?

Thanks!!

Lucy_B · Post by **Lucy_B** » Tue Oct 06, 2015 8:44 am

Oh, and Zizzle- what dose of LDN did you start with? And did you have to increase it over time? Thx!!

mcardle3 · Post by **mcardle3** » Tue Oct 06, 2015 9:27 am

I'm taking 3 tabs of Pepto 2 x a day at this point.

It seems to be working somewhat (doc prescribed 3 - 3 x a day which constipated me).

I actually had a NORMAN this morning, although it was so dark from the pepto...I was so excited it has been YEARS!

Lucy_B · Post by **Lucy_B** » Tue Oct 06, 2015 9:34 am

mcardle3 wrote:I actually had a NORMAN this morning, although it was so dark from the pepto...I was so excited it has been YEARS!

Whoo hoo!!! :poopbanana:

Gabes-Apg · Post by **Gabes-Apg** » Tue Oct 06, 2015 2:22 pm

Lucy
if you have ongoing inflammation (and on the low range of D3) increasing the Vit D3 intake a bit might be an idea, also using the magnesium spray to optimise magnesium levels so your body uses the Vit D3 more effectively...

if you cant afford the enterolab testing (i never did it) if you can go back to a bland, small amount of ingredients eating plan then you can help things along a bit..

Good luck which ever way you proceed med wise...

Marcia K · Post by **Marcia K** » Tue Oct 06, 2015 6:00 pm

Hi, Lucy. I cut out gluten & dairy on my own but I did the EnteroLab testing 10 months after my diagnosis. I was glad that I did because my numbers for soy, chicken, tuna and oats were very high and I was eating those foods regularly. I don't think I took probiotics along with the Pepto. I waited until the D stopped to start taking them again.

Zizzle · Post by **Zizzle** » Tue Oct 06, 2015 8:39 pm

Lucy,
I did Enterolab testing a year after my diagnosis. I hadn't cut out any foods yet. Back then they only tested for gluten, dairy, soy, eggs, and yeast. I tested in the low teens for milk, yeast and soy, and in the 30s for gluten (above 10 is considered positive). I also did the celiac gene test through them and discovered I have the main HLA DQ2 celiac/autoimmunity gene.

Your diet is nearly identical to mine! I'm also off sesame, buckwheat and amaranth thanks to a Cyrex Gluten Cross-ractivity blood test (and fairly obvious reactions), so there are few grains left for me -- just rice and quinoa. I recently tried to reintroduce oats and corn, and it appears to have been a grave mistake... or I was glutened by GF Cheerios.

I have been taking probiotics for the last couple of years. I took Culturelle for a while with no effect, good or bad. I took multistrain traditional probiotics with acidophilus and bifidus and they went right through me every time I attempted with different brands. It was bad. Then I discovered spore-based probiotics. I started with Prescript Assist, which contains 29 soil-based organisms. It made me feel well and calmed things down, but I still had frequent D and some bloating. Then I switched to MegaSporebiotic, which also makes me feel well, tummy calm, and slowed the D (until I glutened myself).

I'm on 4.5 mg LDN. I started at 2.25 mg for 10 days, then doubled to 4.5 mg. I've been on it for almost 2 years, so I can skip a few days without issue. I regularly skip one or two nights a week to make sure I' clearing it out. This is a common practice after you've been on it a long time.