My daughter who is now 15 yo was diagnosed with PSC/AIH in 2017. She also has UC. Her UC is in remission. She was initially treated with Lialda, imuran and Urso. Her labs all normalized however she had changes in her MRI in December 2018. She was started on vancomycin 250mg three times a day. I recently received a letter from our insurance that they are limiting her coverage now to 112 capsules per 180 days which is not even a months supply. She recently qualified for Medical Assistance as her secondary insurance and I am hoping the secondary insurance helps cover her medication. Has anyone had any similar issue with insurance coverage for the Vancomycin. This medication appears to have positive outcomes but it so expensive without insurance coverage.
Liquid form of vancomycin should be much cheaper. I believe many forum members are familiar with this approach (also lots of discussion about in the past if you read through old threads)
Compounding IV vancomycin for oral use is significantly cheaper. Google local compounding pharmacies. Ask them if they can compound IV vancomycin for oral use and, if so, how much it will cost. When you find a winner, ask them how they want the prescription worded then pass this information to your doctor for a new prescription. I did this about 4 years ago and 750mg/day ran about $200-400 for the month.
Another option is mail order Firvanq. I think this has to be ordered through a compound pharmacy and it tends to be a bit more expensive than an IV compound done at the local pharmacy.
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The pills are super expensive but luckely you can buy liquid vancomycin instead, as Ted and jtb said. Firvanq makes a liquid compound which you simply drink. It costs about $300 per month for your daughters dose and any of the big chain pharmacys can order it.
Taking liquid mediciations is a bit more of a pain in the ass, but it worth all the money you save.
Thank you all for your replies. I will look into the liquid Vancomycin. I know her doctor had said oral vanco does not have the same systemic risks as the IV vanco because the oral capsules are primarily absorbed in gut. Does the IV vanco compounded to oral liquid carry with it the systemic risks as the IV vancomycin?
The important distinction is route of administration. Vanco taken orally in any form (pill, IV powder, IV compound to a liquid) remains in the gut (blood levels are typically undetectable) while vanco taken by IV has the potential for significant side effects.
The only distinct issue with taking liquid vancomycin orally is that it also acts on the oral (mouth) microbiome. This typically means additional plaque buildup and non-permanent teeth staining. I went to the dentist 4 times a year to deal with this.