My 14 yr old son was recently diagnosed with ulcerative colitis and psc. I believe the prednisone put the uc in remission. Of course the gi drs were pushing remicade but i pushed back and he’s taking Apriso for nearly 2 months now. He was also more recently put on vancomycin for psc. We live on the east coast so i called dr ken cox from standford who said that it would be all right to stop taking other meds. However, my son’s liver dr and gi dr disagreed. They worried that my son would not have any meds to hold his uc in check. And frankly i’m scared of a relapse also. Things have been going well and i was told that Apriso is a mild drug with very little side effects.
Now my son has had a severe sore throat for 5 days. Pediatrician checked him 2 days ago: no strep, no enlarged lymph nodes, no problem with tonsils…she guesses it may be sllergies.
After googling Apriso’s side effects, i see that a sore throat is a common one. It’s sunday but i will be calling the gi office. My son’s sore throat is painful and i don’t want to continue with a meds that will do this…anyone have any experience like this they can share?
Oral vancomycin (ANI pharmaceutical)1500 mg
Apriso 1300 mg
Prednison 5mg every other day (weaning off)
Oh and strict Specific Carbohydrate Diet
Sore throat may or may not be Apriso side effect.
I have used vsl #3 probiotics to keep my UC in check (I use it together with blueberries, to further boost the effect - there have been several studies showing the usefulness of this therapy). I have explored Oral Vanco for PSC but haven’t started it yet. Maybe good to check with dr Cox what he thinks of combination of probiotics and vanco. I have spoken with his team but I haven’t asked this specifically.
One more comment; dr cox has been treating pediatric PSC patients over 20 years (many of who also have UC) so I would trust his advice on this.
A number of pediatrics on the facebook groups have tapered off of their UC meds with success after starting vanco. A few stay on vanco even though it doesn't seem to benefit their PSC because it keeps their UC/Crohn's in check and is more benign than most of the typical meds. Other cases have it resolve their PSC but it does nothing for their UC/Crohn's.
Trying to get a bunch of docs to agree on something is like herding cats. But how do you know which doc's advice to follow? Tough call.
Not sure what advice to give you,
Thank you for all your replies.
The gi dr on call yesterday (sunday) advised to give my son Apriso and to call his gi on monday. However, my husband and i decided not to give our son the meds and see what if anything changed with his sore throat. My son usually gets his Apriso at 9am. He woke up at 2pm and by 4:30pm his throat was not hurting him at all.
It was so difficult for my husband and I to make that call. If it were me and not my 14yr old, I wouldn’t have a problem taking a risk like that.
My husband will be calling my son’s gi today and will encourage him to call dr cox for a rationale as to why a patient can stop taking other meds while on vanco. We have asked him before to contact dr cox but he said our liver dr has experience treating psc with vanco. (BTW my son’s liver dr has spoken to dr Cox but that was in the past and not about my son)
@Ted …I make my son homemade yogurt as a probiotic as per the Specific Carbohydrate Diet. He eats it with honey (prebiotic) but adding berries would be a great idea. I’m glad your uc is under control without heavy meds. Good luck with oral vanco. Dr Cox said that Vancomycin from ANI is good but only some people benefitted from Vanco from Alvogen. We actually switched from Alvogen to ANI. Thank you!
i have wondered for a while something about vanco. have u learned how long time we should take vanco? any limited time or we should take it for life? my other question is that which dose is the optimum for daily?
thank you in advance.
I am sorry but I don’t have the answers to how long someone should be on Oral Vancomycin. My son is taking 1500mg of Vanco, and liver specislist would like him to be on Vsnco for 6 months. Good luck to you.