Medications And Supplements That May Be Used By MC Patients

[tex]

Hi, Linda,

Cephalosporin is probably the most commonly used prophylactic antibiotic for surgery. I've never had any trouble with it, but I have no idea how it works for others. Ciprofloxacin would be my recommendation if it didn't have such serious black box warnings because it virtually never causes any MC reactions. But it's a very risky drug since it's known to sometimes cause tendonitis, torn ligaments, and peripheral neuropathy. The effects can be disabling, painful, and irreversible and the risk increases with age and the use of corticosteroids. That said, I've taken cipro after the age of 70 and survived without any ill effects (but I've always been a risk taker).

The best practical choice would probably be azithromicin. It has no black box warnings that I'm aware of and it seems to be generally friendly toward MC patients, but one of the listed side effect risks is diarrhea. Most MC patients seem to do OK with it and your surgeon would probably approve it. If he or she doesn't, just claim that you think that you may be allergic to cephalosporin. Antibiotics are never an easy choice for us.

I hope this helps.

Tex

[Linda J Heaslet]

Thanks for your quick response and suggestion!

[Nakolope]

Hi Tex:

I read through the list of SSRIs and SNRIs. Do you have any information specifically about Cymbalta? My PCP seems to believe there are no contraindications. Even though I reminded him that these cause MC.

I realize this is a doc question; but, have you come across in your experience anyone who has success with an alternative to the above category?

As always, thank you for your wonderful insight.

Nancy

[tex]

Hi Nancy,

SSRIs trigger MC for some people — but not for everyone. When it comes to medications and MC patients, everyone responds somewhat differently, whether the medication is an anti-inflammatory drug or something else.

Serotonin is well known as a brain neurotransmitter, but did you know that about 90 percent of the body's serotonin is made in the intestines? Altered levels of serotonin in the digestive system have been linked to diseases such as IBS, cardiovascular disease, and osteoporosis, for example. Our own (this group's) experience with SSRIs has shown that SSRIs can sometimes be helpful in certain MC cases. Increasing levels of serotonin will speed up motility in the intestines, therefore it is sometimes helpful in constipation-predominant MC cases or in cases where motility is irregular and needs to be regulated.

So although SSRIs are pointed out as the cause of their MC by many members here (see this poll), it can be shown that for some patients, for example, SSRIs can provide benefits. Here's a study that demonstrates that point:

Efficacy of duloxetine add on in treatment of inflammatory bowel disease patients: A double-blind controlled study

Cymbalta is duloxetine, as you probably know. Note that these patients were also taking mesalamine, as the point of the study was to use Cymbalta as an add-on to treat depression and anxiety symptoms (which probably could have been treated with magnesium). Also note that long-term use of Cymbalta often causes MC.

I would be surprised if very many doctors are even aware that serotonin regulates motility.

I hope that this is helpful.

Tex

[Lb]

Good Morning Friends-

I am sitting here holding the bottle of budesinide capsules, ready to down my first three and trying hard to see it through a different lens. For two months I’ve thought of it as The Enemy and was determined to never use it, but I am so discouraged with my results in spite of removing everything possible from my diet. I can’t stand living in the bathroom AND feeling crappy all of the time so am wondering if anyone can give me a reason to start or not take the leap to try this route along w diet of course. I’m feeling pretty desperate between the physical part, the fatigue, the disappearance of a social life. My husband is a great support tho his social life is affected of course. I have an appointment w my GI’s nutritionist next week.
Any guidelines for how to direct/maximize that discussion?

I forgot to mention the pressure from my entire support system to try the medication because they are worried about seeing me this way...down 22 lbs in 3 months and cancelling plans right and left. When I force myself to participate in something I’m not really enjoying it because my stomach is so uncomfortable and there is that malaise of spirit hovering...

I cannot thank you enough for allowing me this outlet for whining on...

With huge appreciation and warmest thoughts for your own continuous healing-

Lb
Lb

[tex]

Budesonide will mask most of your clinical symptoms while the diet changes are healing your digestive system. If you're feeling "down in the dumps" because of losing so much weight and spending so much time in the bathroom, the budesonide should improve your outlook on life significantly when it begins to stop the diarrhea and weight loses. It will give you a taste of what life will be like after the diet has had time to heal your intestines. It doesn't work for everyone, but for most people, it stops the symptoms relatively promptly so that you will feel much better during the rest of your recovery period.

Tex

[Lb]

Thanks for your open mindedness and encouragement. If I can get even a half day with no D I’ll postpone it a week, but if not, it’s not the end of the world and may help w transition. Again, many many thanks.

[carolm]

Hi Lb-
I took Budesonide for 4 and 1/2 months (total) and had no regrets. It enabled me to continue working reasonably well and it did stop my weight loss. I had no side effects and it helped me to function so that I could get my diet in order. When I no longer needed it I experienced constipation so I dropped the dosage from 3 capsules to 2 for roughly a month. When C showed up again, I dropped to 3 mgs/ 1 capsule and planned my strategy to titrate off. Because I had gone gf, sf, and df I did not rebound once I discontinued it all together. That was 5 years ago. I’ve never had to take it again and I had no adverse reactions from having been on it.

It won’t get you into remission, only diet changes will do that, but it can stop the decline that happens when MC first hits you.

Best wishes
Carol

[brandy]

Hi LB:

I had extreme pressure from my employer to start Entocort. When I started Entocort I had had "soft serve" type stools for about 3 weeks particularly since I had progressed from WD to "soft serve" on my own.
In retrospect I probably could have done it without the Entocort but the Entocort does help.

[Lb]

Thank you both for your very valuable feedback of your experience. At least there are some positive stories out there regarding the steroid decision.
Take care and be well.
Lb

[ldubois7]

Tex, Gabes, Polly, anyone......

Any new thoughts on antibiotics for treating Lyme....what works best but doesn’t tend to cause a flare?

I may have this issue

[tex]

Hi Linda,

Sorry that you may find it necessary to decide on a treatment. That's kind of a loaded question though, since most of the preferred antibiotics have a fair risk of causing D. As far as I know, the preferred treatments are doxycycline, amoxicillin, or cefuroxime axetil. All I know is that amoxicillin is notorious for causing MC reactions, Polly blames doxcycline as the original cause of her MC, and the first side effect listed on the label for cefuroxime axetil is diarrhea.

OK, I'll start......

Maybe Polly or someone else has some insight on this, but I really don't know enough about it to be able to make any intelligent suggestions.

Tex

[ldubois7]

That’s a great start Tex!

I’m getting tested tomorrow, then I’ll see if I have to make the big decision.

I, too, feel that a round of antibiotics had sent me on a downward spiral, healthwise, a year before I was diagnosed with MC, and have always said that I would only do it again in a true life or death situation.

Thanks for your comment. Hope you’re feeling good.

It’s really hot here, too!

[dolson]

I've been taking Klonopin or Clonazepam since 1991, with no problems. It's for my Spasmodic Torticollis or Dystonia and without it, I'd be in big trouble. Spasmodic Torticollis is a movement disorder I inherited from my Mom's side of the family. All my aunts, uncles, and cousins have/had the disorder or carry the DYT1 gene. It's passed on from generation to generation. I'm related to Ted Turner, and he has this movement disorder. My neurologist wants me to take Artane and I don't like it. It makes me shaky. Getting meds to help you is getting harder and harder because of the Opiod Crisis.

[Hunnigram]

Dear Ted,

I haven't been on here very much. I have had 7 surgeries since 2013. Have had many flareups of MC.

I took an infusion of Reclast for Osteoporosis on September 14, 2018 ... my third one. It calls for one infusion a year for 5 years. My Osteoporosis doctor understood a lot of my health problems and the fact that I have had so many allergic reactions or adverse reactions to many many medications. Antibiotics, and a number of other drugs as well.

You and all your hard work are a blessing to me. I have had this since 2005. It wasn't diagnosed until Mayo Clinic took me through their clinic and ran many tests. It was diagnosed after biopsies during a colonoscopy.

I am in the middle of a terrible relapse right now.... the doctors are saying I had an allergic reaction to Reclast. It is terrible. Nothing....even water will stay in. I am on the diet and just not doing well. Thank you for the list. I mean that with my heartfelt thank you.
Sincerely, Marilyn