Hi folks I hope everyone is having a great summer! I just had my first FibroScan and I scored 14.6. My specialist said my results vary a few points depending on area measured but I fall within the stage2/3 range. I was wondering how FibroScan relates to PSC progression and if anyone can shed some light on time before transplant is needed. Thank you!!
Hi there. My daughter (12 yrs old back then) was diagnosed in December 2013 with UC and PSC stage 2 (through liver biopsy). We started her on oral Vanco (Kabi IV compound) in June 2014 per Stanford’s protocol (500mg, 3x per day). She had a Fibroscan done in November 2015 and her score was 19.6kPa ( border cirrhosis). We continued the Vanco treatment, she had another Fibroscan this year in February, her score was 6.3kPa corresponding to a normal liver. It seems that the Vanco treatment reversed the fibrosis in her liver. PS. She’s been having normal LFTs since she started Vanco, and no clinical symptoms of UC. Maybe my post did not answer your question directly, but you might find some useful info in there.
Hi DB! That is great news. My 22 year old son was diagnosed last August with PSC and Crohns. He’s been asymptomatic. He has an appointment with his heptologist who has agreed to prescribe Vanco (although he says it only lowers enzymes but doesn’t stop damage or progression). My son has never been able to swallow pills so we will be going with liquid compound.
Is Kabi the ‘go to’ brand?
Hello there. For us, Kabi IV lowered the ALP the most. We tried various brands (Mylan IV, Teva IV, Demo IV). For the past 1 1/2 year my daughter was on Kabi IV with very good results wrt to the LFTs, MRCP results, Fibroscan score. My daughter started off at 500mg, 3x per day and for the past year she is on 500mg, 2x per day. Our consultant was in direct contact with Dr. Cox and the dose was reduced per Dr. Cox’s recommendations and she’s been doing well since. Best of luck. Daniela
Is she taking it in liquid form?
Yes. The IV powder comes in a 500mg vial. We fill in 3/4 of the vial with bottle water, mix it well and wait until the mixed solution clears up. My daughter got used to it now, she drinks it in one go, then she takes some water to get rid of the after taste. The solution can stain the teeth in time (slightly yellow-ish colour) , a visit to the dentist will sort it out.
Will your son start on the 500mg, 3x per day as per Stanford protocol? Your consultant can contact Dr. Cox for a follow-through, Dr. Cox is open to cooperation. He also would have seen cases of PSC and Crohns, he will be the best person to advise you on the process. Good luck. Daniela PS. My daughter has PSC and UC.
We’ll be seeing the heptologist Wednesday to get the prescription. He has been willing to follow my lead on this so I will definitely be urging we start 500mg x 3/day. Thanks for you help. I hope everything keeps going great with your daughter.
Hi there. I was just wondering how is your son doing on Vanco. Hope the treatment started to work and the LFTs started to come down. All the best wishes. Daniela
Thanks for your message. Its frustrating but we still haven’t started the medication. the pharmacy insists on working through the insurance appeal process, even though I am ready and able to pay myself. We all know that insurance won’t cover the medication, and they denied coverage. But, insurance then filed an expedited appeal, which was rejected and now we are apparently waiting for the final appeal result.Still no symptoms of anything but we had a “baseline” blood work done so that we had numbers to compare and evaluate effectiveness. ALK=587. ALT=478 and AST=202, so his levels are high.I will be pressing the doctor to get the pharmacy moving.How is everything going with your daughter?
September 16 |
Hi there. I was just wondering how is your son doing on Vanco. Hope the treatment started to work and the LFTs started to come down. All the best wishes. Daniela Visit Topic or reply to this email to respond.
In Reply To
July 29 |
We’ll be seeing the heptologist Wednesday to get the prescription. He has been willing to follow my lead on this so I will definitely be urging we start 500mg x 3/day. Thanks for you help. I hope everything keeps going great with your daughter. Visit Topic or reply to this email to respond. To unsubscribe from these emails, click here.
Sorry to hear that the process of buying Vanco was delayed. In Ireland, they wouldn’t even bother to ask you if you have medical insurance or not. If you have the prescription and the money, that is it…
My daughter (16 years old now) is doing well, thanks God. The latest blood test results (taken 2 weeks ago) are: ALT 20, AST 21, GGT 11, AlkPhos 150 (she is still a teenager), CRP less than 5, ESR 1, bilirubin total 14.4. All results are normal. Hope your son will have his LFTs normalized soon. Thinking of you guys. All the best wishes. Daniela