Julie,
It was good to hear from you and get an update on your son. I too would be concerned with the Oral Vanco forever but honestly I don’t know enough about the drug to give a sound opinion as I was never prescribed it. Some of the reading I’ve done on it though suggests promising results for PSC patients. If you trust his hepatologist I would certainly listen to his concerns and guidance. The hepatologists I’ve dealt with over the years seemed to always make decisions in the best interest of me their patient. I pray that will be the case for your dear son. Keep in touch and I do wish you a very Merry Christmas as well.
Just want to update you all about what my 15 yr old’s hepatologist said yesterday anout my son’s latest mrcp. First of all he was not concerned. He said over and over that “things have stayed the same.” He said that radiologist look for “doom and gloom” and according to hep there hasn’t been any progression of the disease…he did however confirm that my son does have psc…he was not concerned about sludge (he would be if he had stones in gall bladder). He said under distended simply meant that my son ate food prior to the mrcp…my son’s biochemistry does not indicate liver disease or uc…in other words no active disease.
Hepatologist’s plan for my son is still to cycle off of oral vancomycin. He ordered a “elastography ultrasound” of liver to measure tissue stiffness…after results he will reduce oral vanco from 1000mgs to 500mgs…then check LFTs every month for 6 mos.
I asked the dr many questions about whether he thought there would be a viable treatment and cure in the near future. He was nonspecific but said there are some things coming but not for the pediatric community. He said the kids are the last to recieve new medicines…he said he’s got a long list of kids who have hep C but insurance won’t cover treatment. He said vanco can be a bridge for my son until a treatment is found.
He also explained that psc in children is different than in adults. PSC is a much slower disease in children (for the most part). …i felt as though he kept on reassuring that things were going to be ok…he even pointed at my son to say “look how healthy he is…”
I try to keep a positive outlook and hold on to hope with everything i’ve got. Thank you for listening…wishing all of you good health and happiness in this holiday season and in the years to come.
Julie,
So glad you got a good report from your sons hepatologist. I’m encouraged from what you described. It sounds like he has a good doctor to manage his ongoing care. We are here for you so please stay in touch and let us know how things are going. Glad they are going to check his LFT’s monthly. Probably after the 6 month period they will go to once or twice a year for now as long as he is stable and shows no progression.
I trust you and your family will have a very Merry Christmas and Happy New Year!
A Triple Blinded, Randomized, Placebo-Controlled Clinical Trial
to Evaluate the Efficacy and Safety of Oral Vancomycin in Primary
Sclerosing Cholangitis: a Pilot Study
ABSTRACT
Background & Aim: Recent studies have suggested the therapeutic effect of antimicrobial agents on primary
sclerosing cholangitis (PSC). Therefore, we aimed to evaluate the efficacy of oral vancomycin in patients with
PSC.
Method: A triple blinded, randomized, placebo-controlled trial was performed on 29 patients (2015-2016) in
the Imam Khomeini Hospital, Tehran, Iran (NCT02605213). Patients were divided into two groups by simple
randomization method: placebo 11 (37.9%)/vancomycin 18 (62.1%) and were treated with oral vancomycin
(125 mg, four times a day) for 12 weeks. All patients in both groups simultaneously underwent treatment with
ursodeoxycholic acid (UDCA, 300 mg, three times a day) before and during the study. Patients’ laboratory
data and clinical symptoms were recorded at the beginning, first and third month after starting treatment,
and the response to treatment was analyzed.
Results: 29 patients with a mean age of 36.27±10.60 years were included in the study. Primary endpoints
were accomplished in the vancomycin group showing a significant decline in the mean level of PSC Mayo
risk score (decrease rate 3rd month - baseline = -322.03%, p=0.026) during follow up time. Moreover, the
analysis of the level of alkaline phosphatase (ALP) in the vancomycin group showed a significant decrease
in the third month of treatment as compared to its level in the first month (mean difference 3rd month -1st
month = -142.92, Decrease rate= -18.24%, p=0.02). Among secondary endpoints, erythrocyte sedimentation
rate (p=0.005), gamma-glutamyl transpeptidase (p=0.02) and patients’ symptoms including fatigue, pruritus,
diarrhea and anorexia showed a significant decrease in the vancomycin group.
Conclusion: This study demonstrated an acceptable efficacy of vancomycin in the treatment of PSC.
Is anyone else know that vancomycin should be taken for a lifetime? people who joined the trial give some breaks -i mean days, weeks or months- using it or they use it with same dose every single day?
The subjects in the trials take the drug every day and most of us taking it outside of a trial do the same. Trials have found that PSC symptoms return after stopping the treatment. I also stopped treatment as an experiment and my symptoms returned after 45 days. The Stanford doctors have experimented with cycling treatment with success, although I’m not sure of the exact protocol. I plan on taking this every day for life until something better comes along.
I would like to share our family’s experience with Vanco. It is a long story and mostly relevant to folks who wonder about dosage…Please keep in mind it is only and strictly one family’s experience: My daughter was 12 when diagnosed with overlap AIH/PSC 5 years ago. Earlier she was diagnosed with Celiac and followed strict gluten free diet. She was also diagnosed with mild IBD (via colon biopsy). Neither her PSC nor her IBD had real clinical symptoms, but her LFT’s and MRCP showed the above diagnosis. After much research we started her on 1500mg per day (powder form, no capsules available in Israel). Her response was fantastic, with nearly all lft’s normalizing, with GGT taking a few months longer to normalize. Over the past 5 years we entered a cycle in which we would attempt to lower the dosage to (twice to 1000, once even to 500) and always we saw her lft’s going up sharply after a few weeks. At which point we would go back to 1500 and she would respond nicely. Through out no clinical symptoms.
Last summer this cycle went south- when we realized her lft’s did not go down when we went back to 1500, we ended up going to 2000, and now she is on 3000 per day and still GGT and ALT/AST/ALKP are too high. A recent colonoscopy showed UC became moderate (from mild).
We have no way of knowing this (I emphasize this!) but we speculate that if we stayed the course at 1500mg per day without lowering the dosage as we did, we might have been spared the current situation in which our local Dr is pushing hard for “standard” treatment: Imuran and Pred.
Right now we’re seriously looking at FMT, before going the standard way, which will be our last resort, due to our concerns over the severe side effects.
Best luck to all of us. (and if anyone tried FMT, I would love to hear how it went…)
There hasn’t been a lot of research regarding vanco and pregnancy. Vancomycin taken orally is poorly absorbed and limited to the intestinal tract - under normal circumstances the amount of vancomycin in the blood is undetectable. I think it would be a good idea to routinely check that there is in fact no vanco in the blood if it is taken while pregnant.
These are the brands and doses I have tried in order:
Oral Alvogen 1500mg (500mg tid) - worked okay, but not great (ALP from ~600 to ~300; most symptoms resolved).
IV Kabi compounded for oral use started at 1000mg then down to 750mg (250 tid) - worked great (normal ALP and no symptoms).
Oral Ani started at 750mg but now down to 500mg (125 qid) - works great (normal ALP and no symptoms). This is the “authorized generic” which is reboxed name brand Vancocin. Some older posts refer to Prasco which was the old authorized generic that was replaced by Ani brand.
For some people brand doesn’t seem to matter. For others it can make a big difference. Same story with dosage amount - some people need 3000mg/day to keep numbers normal and others can get away with 250mg/day.
We got our first Vanco blood test results. Quick background: My 22 year old son was diagnosed in August 2016, confirmed after a Dec 2016 colonscopy with PSC and Crohn’s. He has never had any symptoms.
His heptologist agreed to try Vancomycin (great doctor in NYC if anyone in the metro area needs a name) and we had a baseline blood test in August 2017. We didn’t start Vanco until early October. He’s taking 1500 mg in liquid form (500 mg 3x/day). Had a follow up blood test November 21 and the doctor is happy:
Bilirubin stayed stable at 1.1
ALT went from 478 to 46
AST went from 202 to 26
Alk went from 587 to 179
GGT was not tested in August and its very high at 481, but I have nothing to compare it to.
Great to hear that.
I was talking to Stanford docs recently about Vancomycin and results in the phase 3 trial seem very good.
They are even discussing federally funded fully FDA compliant trial (leading to FDA approval and coverage under insurance) but one problem seems to be that no current patient want to join such trial (because a risk of getting placebo instead of vancomycin).
Jace I’m so happy for your son. Probably GGT was very high before. My daughter’s GGT before vanco was 750. So so happy for you guys… Visit Topic or reply to this email to respond.
In Reply To
jace0221
November 29 |
My son’s doctor talked about getting into a clinical trial and that was my exact reaction. I’m not interested in placebo. Visit Topic or reply to this email to respond. To unsubscribe from these emails, click here.
Jace,
Hello. Just one observation about clinical trials. While I certainly understand your comment about not wanting to be the patient who received the placebo, there are certain benefits of being involved in a clinical trial for PSC patients that might be worth considering. I was in a 2-year clinical when I finally got the call for transplant at the end of that second year period, so thus I had to end the trial early, but that was fine with me. The thing is, though, you are going in once a month usually, for labs, physical exam by doctor or PA and then they are doing MRCP’s from time to time to see the effectiveness of the trial drug on the bile drugs, sometimes liver biopsies and fibro scans. For me, this was key in getting me listed for transplant. Although the studies are blind studies, the patient is entitled to receive copies of the labs and all reports. Well, I would then share all that information each month, labs included with my hepatologist. Usually you don’t see your hepatologist in early progression but once or twice a year. For me though it was about every 3 months in the last year leading up to transplant, but the information I kept feeding him about my situation was invaluable. He was able to easily present my case at just the right time to the transplant committee, I was listed in January thankfully as my MELD went from a 12 in January to a 36 in July the same year and I got my transplant 2 days later.
Bottom line I’m trying to emphasize, that although you may get a placebo possibly, the benefits of all the extra tests and time with the doctors/PA’s is invaluable. Just something to think about.
Hope your sons numbers continue to improve.
Awesome numbers Jace! From what I’ve observed, ALP tends to be more of a snapshot of right now whereas GGT can often linger for awhile after a spike in value. It will be interesting to see what GGT looks like in a few months.
Great way to look at it Mark. There is always a silver lining. What is you American say. If you get lemons make lemonade, well lemons arnt big in Australia as we grow lots of wheat. So will start one here. If you get a lot of wheat, make beer? Have a nice day.