This is the first time I am starting a new thread in the group. So far, I have asked here and there in the ongoing threads. My son (adult) has small duct PSC and UC (15 years). For now, his PSC is under control but he is having very difficult time with the UC. He has tried every drug (including biologics) for UC and is on 25 mg Prednisone for a long time which is not helping him much and is thinning his bones. Additionally, he is on Colazal, URSO and a biologic (stopped Imuran a month ago). This group has been very helpful and informative to us, especially in making the decision to try Vanco for UC and in convincing his Hep (through his GI) to give him Vanco prescription. My son has been on it for a month now and we were very hopeful reading others’ experiences how soon Vanco helped their UC on the side. It has been one month now on Vanco (1,500 mg) but the improvement is not significant enough to reduce the prednisone dose (25 mg). He is still seeing blood, cramps, and fatigue. However, motions frequency is couple of notches down. He is on Fagron compounded Vanco. Is this version of Vanco different than FirvanQ’s version? Should we try a different supplier of Vanco or in the capsule form? His insurance is not covering the Vanco, may be because it is compounded. Additionally, he is on Flagyl for last 3 weeks. Can Flagyl negate the benefits of Vanco?
Reading other threads, it seems like people on Vanco are taking probiotics regularly and blueberries with it seem to help them. I am wondering if the concentration of Vanco will be reduced (to fight gram positive bacteria in the colon) due to some of it will now be used up to kill the probiotics as well. Is that possible but then others are seeing added benefit of probiotic and blueberries combo with Vanco treatment so this theory seems incorrect.
Does anybody have experience with CBD oil from Hemp for UC? Can it impact liver in negative way with less than 0.3% THC in it?
I’ll really appreciate suggestions as he doesn’t have much time left, his GI is not happy with this dose of prednisone and wants to go colectomy route. Sorry for the length of the post.
Hi Pam, my daughter too is on vanco. It was highly suggested to me that she use ANI brand and it has been a miracle. I’ve read how vanco can be brand specific so it certainly couldnt hurt to switc to a different brand. She has never been on probiotics, nor blueberries, nor does she chew her capsules. I’m just mentioning that becasue I know there are people that do those. In my daughter’s case, she wasn’t showing symptoms yet of UC (although her colonoscopy showed she did have it), but vanco brought her numbers back to normal, and, after over a year absence, it also brought back her period which the doctor said it was because most likely her liver is healing. Good luck! And keep us updates about your son’s health.
Thank you Joki for your reply. Does brand matter when it comes to UC? For PSC, I read that brand makes big difference but for UC we thought the response is not brand specific, however, it wouldn’t hurt to switch the brands and try different one. I wasn’t aware of “chewing the capsules” vs swallowing helps in some cases. What a nice side effect in her case that the treatment brought back her periods!
I’m not sure if brand matters if you want to only focus on UC and not PSC, but, my naive thought is that, if you control the PSC, the UC will follow. Maybe. From most things I’ve read on this site, and the facebook support sites, ANI seems to be a popular brand…although it does seem that everyone has their own they use, whether becasue it helps, or becasue it’s cheaper and insurance won’t pay for a certain other brand. This disease seems to have so many variable and what works for one may not work for another. Just keep trying. I’ve read people trying different things (hence the chewing of the capsules…maybe they can’t swallow pills??) and sometimes getting better results.
The brand issue comes up frequently with the pill form of vancomycin because many patients have better results on the name brand product Vancocin (also sold by Ani as a generic) versus the other generics. In vitro testing of the vancomycin between these products shows equivalence, so the antibiotic itself isn’t the problem. The likely issue is that some as yet unknown inert portions of the generic pills don’t dissolve as well as Vancocin under certain conditions. Some people have success chewing these generics as a workaround. In addition, at least one member on this board had improvements switching IV brands (compounded IV vanco). Changing brands is worth exploring if your son doesn’t normalize, but it may be a good idea to stay the present course for 2-3 months before making any changes as it may take more than a month to see the full benefits of his present protocol.
My insurance does not cover the IV compounds, but it does fully cover the pills. It is hard to tell what insurance will cover until you try to fill it at the pharmacy.
Oral vancomycin is super concentrated when taken orally and kills most bacteria, to include most commensal gram negative bacteria. My initial thought is that concurrent Flagyl use shouldn’t make a difference. This hasn’t been tested, though. Ultimately I don’t think anyone knows if Flagyl could cause a conflict. High concentrations of oral vancomycin also means that most probiotics are killed. I believe only 2 of the 8 strains in VSL#3/Visbiome stand a chance of surviving.
jtb, thank you for your detailed reply and the effort to address the concerns. When my son got Rx for Vanco we thought he could fill the preferred brand (ANI or Firvanq) at the pharmacy, instead his Hep wrote particularly the Rx for Fagron, so my son had to get it filled at the compounding pharmacy that his Hep assigned. May be it would make sense to wait another month before looking in to switching the brands.
On the effect of Vanco on VSL#3, it’s interesting to know that couple of strains might survive.
Pam
Pam,
My son is 18 and has UC and small duct PSC, both diseases cropped up age 15. He takes 300mg Urso 2x aday, VSL#3 capsules not packets( the capsule is made to withstand stomach acid and I think helps get to the gut better) 2- 2x a day, fish oil, tumeric, CBD oil 25mg once a day, Balsalazide discount 750mg x9 per day, Vitamin D, Xolair( he has an autoimmune skin condition as well) and half a dose of multi vitamin a day. He doesn’t eat much dairy or gluten, he eats a more paleo diet now organic meat and veggies. Not much sugar either it causes inflammation. No processed foods or dyes . Not much fast food. We feel diet is huge in managing his symptoms. Now finally 3 years later my son’s symptoms ALL of them : Gut,Skin ,liver,blood, all are in normal ranges, he still battled fatigue and random liver aches but he’s better . It took three years to tweak his diet, kids are stubborn but he finally is done with the horrible side effects of crappy food. I hope this helps some. I am sending prayers your way.
My apology for the late reply to your response due to some emergency. It’s a relief to see your response that your son is also using CBD oil for some time now and his liver seems to be doing fine as his LFTs are in the normal range. It seems like Balsalazide is keeping his UC in check. However, diet, probiotics and CBD seem to be playing a major role as well. Sticking to a clean diet is challenging especially at your son’s age, however, your perseverance is paying off in your son’s case.
Could you tell what kind of CBD is he taking (if allowed here)? My son is taking Advanced CW alternating 1 and 2 ml per day (Hemp extract 43 mg per 0.5 ml). So, this Extract has low levels of other Cannabinoids and Terpenes as well along with CBD. Thanks for your response.
Pam
Pam,
Hi there no worries on response time we are all busy busy parents. My son has taken CWeb plus one dropperful everyday… The CBD dose is 15-25mg CBD, it is quite expensive stuff so we are trying a new company out its called LazarusNaturals they have deep discounts for low income/ disability people. It differs from CW as it is a CBD isolate and not a full spectrum oil. It is working good so far. We may switch back and forth to get the benifits of both oils. Have a good day!
Pam,
I began CutisPharma Vancomycin last January. Although I immediately – as in within a few days – felt and saw a difference in my UC symptoms and stools, my colonoscopy a month later showed no improvement. You could have fooled me, as my stools were as they had/have not been since I was a girl, fifty years ago. I decided to bite the bullet (Cutis was entirely out of pocket and Ani required me to get into the medicare catastrophic coverage before they began to pay 3/4 of cost [I still pay almost $300. a month]), and switched to ANI 500 mg three times a day. STILL my stools and UC symptoms had receded but my liver enzymes did not improve until I went up to 750 mg 3x day. Let me know if you have any questions. I am not on my computer daily this month, so if I don’t respond immediately, I’m sorry for this! Best of care, Susan
Susan, your experience of nice side effect of Vanco on UC along with other PSCers’ with similar experience was very helpful in pushing/trying Vanco for UC in my son’s case. He did see improvements in UC symptoms but then it was not improving any further after five weeks of Vanco and CBD oil. He added Xeljanz on Friday (8/24) and on Saturday his UC got little better and now for last three days his frequency is down to two motions from average of 4.5x. But what is puzzling that Xeljanz is supposed to take about a month to start working so all of a sudden change in frequency from 5 to 2 or 1 is some what puzzling. Is it Vanco showing its delayed effect or is it Vanco + CBD and Xeljanz in combination, hard to figure out.
Not complaining, now he is reducing steroids.
jtb: He is staying with Fagron brand of Vanco for now.
Yes, it was an immediate improvement on Cutis Pharma and now even more so on 750 3x day of ANI Vancomycin. Xeljanz seems to have a lot of side effects and issues of concern. If you think it’s not making the difference maybe he wouldn’t need to be taking it?
I’m not sure CBD oil would effect UC or have synergistic actions. It definitely didn’t for me.
Best of luck. Let me know if you’ve other questions.
~ Susan