Update on 5 Year Old Son (UC-IBD) and Vanco

Life with Primary Sclerosing Cholangitis
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Updates on liver numbers for my recently diagnosed son to the extent it helps anyone else.

My 5 year old son was diagnosed with UC-IBD with overlap syndrome in July. Liver Biopsy showed Stage 3 fibrosis.

He started on Ursodiol and Prednisone in mid July. We got him on Vanco (1000 MG per day) in late July.

His initial numbers from July 8:

ALP: 969 (Normal Range: 142 - 335 U/L)

AST: 197 (Normal Range: <41 U/L)

ALT: 220 (Normal Range: <42 U/L)

GGT: 458 (Normal Range: 3-22 U/L)

CRP: 22.3 (Normal Range: <5)

ESR: 76 (Normal Range: <15)

This weekā€™s tests (after 40 days on Vanco; 28 days on ANI brand Vanco):

ALP: 171 (Normal Range: 142 - 335 U/L) 82% reduction; 35% reduction over last 2 weeks (has been in normal range over last month, but still substantial reductions)

AST: 39 (Normal Range: <41 U/L) 80% reduction; 38% reduction over last 2 weeks (first time in normal range)

ALT: 74 (Normal Range: <42 U/L) 66% reduction; 38% reduction over last 2 weeks (substantial drop over last 2 weeks, closer to normal)

GGT: 149 (Normal Range: 3-22 U/L) 67% reduction 37% reduction over last 2 weeks (very pleased at numbers, as GGT has been the slowest to come down; substantial drop over last 2 weeks)

CRP: 3 (Normal Range: <5) (was normalized right away)

ESR: 8 (Normal Range: <15) (was normalized right away)

We are very pleased where his numbers are at with one exception: His platelets were low (98), lowest they have been.

He is acting great for the most part, mostly solid stools (still prone to some quick to anger issues due to steroids but those are being reduced each week), in school at Kindergarten, etc.

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I would add that his Ursodiol dosage was increased over last 2 weeks so we do not know if the reduced numbers are attributable to Ursodiol or Vanco.

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Very glad to hear your son has responded so well to Vanco treatments. From all Iā€™ve read it sounds like younger patients do much better with Vanco than adults might do who get PSC later in life. I hope he continues to do well and can live a normal healthy childā€™s life. I always say, even with PSC we have to live life to its fullest! Donā€™t let this disease stop you from all your hopes, dreams and ambitions in life. The same goes with our younger patients. They need to run, play and enjoy just being a child without the constant reminder of PSC ever around them. I wish you and your family the very best.

Mark
PSC 2011 / Liver Transplant 2015

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Thank you for the update. This sure offers a positive outlook to everyone considering Vanco. Wishing your son good health and happiness !

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Normal childhood. I agree: let him be a normal kid in every way, even getting muddy and rough housing. He will know his limits. I was undiagnosed at his age (a long time ago) and I was a typical boy. No more restrictions than usual.

As an adult, I faced lifeā€™s issues, including PSC with confidence. Normal childhood played a major role in how I viewed myself and gave me the desire to fight for my health when the going got rough. Of course, there are many factors besides childhood that affect you as an adult, but it plays a role in every stage of life. Let your child explore, play and compete. He will grow up better for it.

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Updated test (7 weeks on vanco; about 5 weeks on ANI brand vanco):

everything is about same as last time (ALP well within normal, AST borderline normal, ALT down slightly, still slightly elevated), except that GGT is down to 104 (another 30% drop over last 2 weeks), which is good. Platelets a little higher. Overall, numbers continue to trend in the right direction. Thanks for all the support.

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So glad to see thing improve.
Jeff

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Son just got new test results. 4.5 months on ANI vanco (1000 per day):

ALP ticked up to 311 (but still within normal range, which is below 335)

AST is at 38 (essentially the same, still within normal range)

ALT is at 65 (increase from last monthā€™s test of 55, normal range is 42 and below)

GGT just slightly down from 80 to 79 from last monthā€™s test (normal is below 22).

Everything else is essentially normal (platelets are low but have increased from 100 to 129 from last monthā€™s tests).

We were hoping everything would be in normal range on this test but essentially everything is flat, although still huge improvements from tests at initial diagnosis 6 months ago.

Any thoughts would be appreciated.

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Nice. One thing I learned from reading test results is that it is best to be considered ā€œunremarkableā€.

Glad those levels are in the normal limits. The platelets will usually be lower than normal. Even post TX, I was told they would always be lower than normal.
Jeff

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Update,

For my 5-year old son, we started on Ursodiol and Prednisone in mid July (after UC-PSC diagnosis in early July). We got him on Vanco (1000 MG per day) in late July.

His initial numbers from July 8:

ALP: 969 (Normal Range: 142 - 335 U/L)

AST: 197 (Normal Range: <41 U/L)

ALT: 220 (Normal Range: <42 U/L)

GGT: 458 (Normal Range: 3-22 U/L)

CRP: 22.3 (Normal Range: <5)

ESR: 76 (Normal Range: <15)

This weekā€™s tests (after 6.5 months on ANI brand Vanco). Virtually all LFTs normal, except GGT, which has also continued to trend down:

ALP: 300 (Normal Range: 142 - 335 U/L) Normal (reduction from last test)

AST: 30 (Normal Range: <41 U/L) Normal (reduction from 38 on last test)

ALT: 42 (Normal Range: <42 U/L) Normal (reduction from 65 on last test)

GGT: 53 (Normal Range: 3-22 U/L) Getting closer; reduction from 79 on last test.

ESR and CRP normal.

Everything else normal (platelets are trending up as well at 148, although still a little below normal, which is 200 baseline).

Overall, my son is doing great. Has been in school and sports all year. We are so happy about these numbers.

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Nice, STL. so glad to see those numbers decrease.
Jeff

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That is incredible!!!

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Hi STLBluejay,

Very glad for you. I can understand the relief. As you noted before youā€™re not sure if LFT lowering is Urso or Vanco. From my experience and research thats very valid. When I was rediagnosed with rPSC (transplanted in 2012) I was prescribed Urso. I took it for 3 weeks and it did as designed, ā€˜loosenedā€™ the bile and let it flow and the liver stopped complaining about bile backup and stopped throwing out LFT markers (they normalized).But from what I read, Urso, although great for some liver things, does not stop the progress of PSC . we suspect - based on a handful of papers that Vanco does. Urso is like tylenol for a tooth infection vs penicillen, both lower the marker (pain) but only the latter (penicillen, akin to Vanco) actually lower the marker because it may be healing (we theorise anyway). In my rPSC case I stopped Urso after 3 weeks and started Vanco and LFT stayed normal for years to this day. Anyway, Iā€™m no MD, and my Hepatologist said he still prescribes Urso for PSC because it has some secondary benifit (based on research data), so Iā€™m not saying go off it, but something to think about and to discuss it with your doc

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rjm,

Great points. I have also brought that up with our hepatologist and will do so again at the next visit.

Thanks,

Derick

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Update,

For my son who just turned 6, we started on Ursodiol and Prednisone in mid July (after UC-PSC diagnosis in early July). We got him on Vanco (1000 MG per day) in late July.

His initial numbers from July 8:

ALP: 969 (Normal Range: 142 - 335 U/L)

AST: 197 (Normal Range: <41 U/L)

ALT: 220 (Normal Range: <42 U/L)

GGT: 458 (Normal Range: 3-22 U/L)

CRP: 22.3 (Normal Range: <5)

ESR: 76 (Normal Range: <15)

This weekā€™s tests (after 8.5 months on ANI brand Vanco). Virtually all LFTs normal, except GGT, which has also continued to trend down:

ALP: 312 (Normal Range: 142 - 335 U/L) Normal (slight increase from last test but still normal)

AST: 26 (Normal Range: <41 U/L) Normal (reduction from 30 on last test)

ALT: 28 (Normal Range: <42 U/L) Normal (reduction from 42 on last test)

GGT: 36 (Normal Range: 3-22 U/L) Getting closer; reduction from 53 on last test.

ESR and CRP normal.

Everything else normal (except platelets in the 140s, 200 is normal)

We are very happy with these numbers! (As an aside, we had his twin brother tested this week as well, just to make sure he does not have an markers for PSC and his tests were completely normal)

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Nice!

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Update,

For my son who just turned 6, we started on Ursodiol and Prednisone in mid July (after UC-PSC diagnosis in early July 2020). We got him on Vanco (1000 MG per day) in late July 2020.

His initial numbers from July 8, 2020:

ALP: 969 (Normal Range: 142 - 335 U/L)

AST: 197 (Normal Range: <41 U/L)

ALT: 220 (Normal Range: <42 U/L)

GGT: 458 (Normal Range: 3-22 U/L)

CRP: 22.3 (Normal Range: <5)

ESR: 76 (Normal Range: <15)

This weekā€™s tests (after about 11 months on ANI brand Vanco). All LFTs normal, even GGT, are now normal:

ALP: 253 (Normal Range: 142 - 335 U/L) Normal (decrease from last test )

AST: 27 (Normal Range: <41 U/L) Normal (same range as last test)

ALT: 30 (Normal Range: <42 U/L) Normal (same range as last test)

GGT: 21 (Normal Range: 3-22 U/L) Reduction from 36 on last test and first time in normal category!

ESR and CRP normal.

Everything else normal

We are very happy with these numbers!

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