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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Vancomycin Lab tests

Hello,

My son was dx with PSC a little over a year ago at the age of 14. I convinced his local specialist to prescribe him vancomycin. His doctor started out with vancomycin 125mg three times daily. I knew this was below the therapeutic dose but intended for this to be a step in the right direction. My son’s symptoms did not improve so I convinced his doctor to increase the dose to vancomycin 500mg three times a day. The insurance has, thankfully, paid for the medication thus far. However, there was a scare a few weeks ago when the pharmacy billed the wrong insurance and informed his doctors office that a prior authorization was needed. Instead of doing the prior authorization, the doctor said to decrease the medication back to the approved 125 mg three times daily. It is my understanding that anything under 1500 mg is futile and I explained this to his physician. In the meantime, the miscommunication about his insurance was corrected and he was able to continue taking vancomycin 1500 mg daily. Also, I spoke with the pharmacy and he takes vancomycin from the manufacturer Ani (I read that was important). Unfortunately, my son’s symptoms haven’t improved. In fact, he is missing more days of school. Previously, he was missing one or two days. Now he is missing up to 3 days. He c/o of a balloon feeling in his stomach, diarrhea, abdominal pain, and extreme fatigue. I should mention that my son is also dx with Crohn’s disease. I’m worried and asked his doc to do laboratory work but he said he doesn’t feel that it is indicated at this time. He has been on vanco for a couple months now without any improvement or laboratory work. My question is: Should there be routine laboratory test performed while on vancomycin medication therapy? If so, which laboratory tests are important? How long should someone continue to take vancomycin if symptoms do not improve? I appreciate any help.

Concerned Mother

Is your son seeing a heptologist with experience treating PSC? That is real important. Also, with my son, we have blood drawn every 2 months. Are you saying that there have been no blood liver panels run since he started Vancomycin? I think it is important to have regular blood test every 8-10 weeks. It is possible that he is having Crohns flare but that his enzymes may be showing improvement.

Jace0221,

Thank you so much for your quick reply.

My son has two doctors. One doctor is a local hepatologist who refused to prescribe my son Vancomycin for some time. I also make the 12 hour drive several times a year to Mayo in Rochester, MN. He sees a hepatologist and gastroenterologist in both locations. The hepatologist at Mayo also refused to prescribe him vanco initially because she was afraid of a possible super infection. However, at the last visit to Mayo she said she would be on board with vanco if his laboratory levels were high. She reported high liver enzyme would indicate that liver damage was occurring. In the meantime, I spoke with Dr. Davis is Sacromento, California who is doing research using vanco to treat PSC pediatric patients with reportedly great success. Dr. Davis did not think my son should wait to start vanco therapy. She agreed to communicate with my son’s local hepatologist. Although I don’t believe Dr. Davis actually spoke to my son’s local hepatologist on the phone (they played phone tag) it was enough to convince his local doc to prescribe vanco. In addition, my son’s local hepatologist expressed interest in conducting a clinical trial using vanco. However, he does not seems to be aware of the Vanco treatment protocol. As I mentioned, he prescribed him vanco 125 mg three times daily.

It seems like he is due to have his blood drawn for the Mayo docs. He had lab work done in Jan., prior to starting the vanco, and everything was normal. I’m just afraid the increase in symptoms mean the disease is progressing. I’m going to contact Mayo today and see about obtaining lab orders. I don’t understand why his local doc doesn’t think it is necessary.

However, I am grateful that his local doc gave us chance to at least try. Hope! Somehow I imagined that his symptoms would quickly improve and he would once again have the energy to get out of bed. He was hospitalized over a year ago for an unknown infection and was prescribed Flagyl for 10 days following discharge. He looked at me one day during the antibiotic course and said “Mom, I actually feel normal.” I thought he would start vanco and once again look at me and report feeling normal.

His GGT, ALT, AST, and bilirubin were normal back in Jan?

Labs are typically checked at least every couple months when starting treatment. The efficacy of the treatment in this case may be complicated if your son’s numbers were normal to begin with. Typically after 3-4 months is a good time to reassess the treatment, either changing a variable like dosage amount or stopping, if symptoms continue to persist or LFTs remain elevated.

Hello,

I too am a concerned mom. My daughter was diagnosed at the age of 16 with UC and PSC. It took us to our 5th GI dr to finally get her to her new healthy. The four prior GI and Hepatologist were treating the PSC first because her liver numbers were sky high. They were also treating the UC with different meds plus steroids.

Our GI explained to use that everything we put in our mouth filter thru the liver, thus the amount of meds she was taking per day for PSC and UC was not helping her at all. He began to focus on her UC as he stated we needed to get that under control first. She did neeed an ERCP, but no blockage was found, could have been moved when we they pushed the dye thru.

No meds were able to bring her UC under control , in fact got worse and had to have her colon removed but does have a Jpouch.

She had blood panels every 6 -8 weeks and what do you know, her liver numbers never looked so good after they UC was under control.

She was treated for UC and got all the meds out of her system and her liver numbers normalized.

Why I went into the back ground is she was being treated for PSC, but we believe the first four dr’s should have focused on UC.

I’m not a dr, nurse and don’t claim to be but your post stuck something in me to reply. I just wonder with his stomach bloating and other issue sound like Chron’s could be the issue.

Hang in there and hope you get an answer💜

I’m so sorry you and your family are going through this. As a mom, I understand. Dr. Davies in Sacramento is a pro and you should listen to everything she says. She works with Dr. Cox who was the one who connected vanco and PSC over 20 years ago. Vanco has been successful for my daughter at 1000mg per day, her doctor wanting to start lower and go up if needed, but never did. We too take Ani brand. No UC though. From what I understand, vanco works best if no cirrhosis, which, it sounds like, your son doesn’t have. But his symptoms seen to be more related to Crohns than PSC, so it may be hard to tell if vanco is improving (im not really following what you’re saying about his blood work…normally, LFTs and GGTs are high, vanco imporves them, ideallly, normalizing them, allowing liver damage to ideally heal). You should ask Dr. Davies what to do about the Crohns. I’ve learned that, unless a doctor deals with PSC, they may have no idea what to do since they hardly get any PSC patients. Can you make an appt with Dr. Davies? We live in LA but my daugther sees a doctor in NYC because NO doctor in LA will prescribe vanco. She only needs to see him once a year. You can do your test and scans locally. My be worth the time. Good luck.

My daughter was diagnosed with Celiac, PSC and Crohns, 6 years ago when she was 6 years old. She started the Specific Carbohydrate Diet on August 2017, to help control her Crohns Disease. On August, 2018, she started Vancomycin, to help with her elevated liver enzyme levels. By November of 2018, after my daughter’s colonoscopy, endoscopy and liver biopsy, for the first time since diagnosis, she was in remission from Crohns and her liver enzyme levels normalized.

When my daughter started taking Vancomycin, she was on 250mg caps, 3 times per day. Currently her gastroenterologist has reduced it to 2 caps per day.

We all know there is no cookie cutter solution to help every child as everyone has to find what works for them. With that said, I do highly recommend you look into the Specific Carbohydrate Diet, and focus more on managing your son’s Crohns Disease at this time and see if with a special diet he is able to normalize his liver enzyme levels. Hang in there. There are options out there for you to try. Don’t loose hope.

Yes you should have monthly labs. What brand of vancomycin is he on? This is important because ANI is the only one that works for many patients. At age 16 my daughter was on 750 mg 3x per day for over a year. After she normalized, we reduced her to 1000mg 2x per day. She has remained on this for 6 years now.

BLH- PSC and IBD diagnoses can be earth-shattering, especially when your once seemingly healthy teenager is suddenly plagued with a rare, progressive disease with an unknown course. I thank everyone for their support and reassurance. I believe that I was in panic mode but agree the symptoms appear to be related to Crohn’s disease.

Joki- I’m going to take your advice and schedule an appointment to meet with Dr. Davies in Sacramento this summer. I apologize for the confusion concerning his labs. My son’s labs were normal for several months prior to starting the vancomycin. Therefore, I don’t have a baseline to gauge the efficacy of the vancomycin.

LM101- Thank you for your reply. It must’ve been devastating to have your daughter diagnosed so young. I have purchased Specific Carbohydrate books in the past. I am a vegetarian so it would not be a drastic change to alter my diet as well. However, my son is such a picky eater (to the point that I have wondered if he has a sensory processing disorder). I have introduced countless healthy choices into his diet and he simply refuses to eat the alternatives. Recently, he has lost weight and his doctors encouraged him to increase his caloric intake and not to focus on his dietary choices. I have spoken with him about your email and he agreed to accompany me to the grocery store to try to find healthier options. I hope this is a start in the right direction. I guess all I can do is keep trying.

Cactus girl- My son takes ANI brand vancomycin. His doctor started him on Vanco 125 mg every 6 hours around the clock. Since he has agreed to increase the dose to 1500 mg. I administer it in 3 divided doses during waking hours. I made the frequency change on my own and I hope the medication is still doing what it was intended to do. Do you administer the medication during the day or around the clock?

I thank everyone so much for their support. I feel renewed hope. My son is having labs drawn tomorrow. Vanco is a powerful medication that incites fears in the minds of healthcare providers. However, I am reassured by others in the small PSC community reporting positive results.

Thank you so much!

Since I began Vancomycin, a year and three months ago, I have my blood work done once a month to monitor liver enzymes, kidney levels, complete blood count, GGTP, and Vancomycin levels in my blood (none discernible thank goodness). We have been changing my dose based on the blood work results. A colonoscopy in two weeks will show how significant the change in my UC although Symptomologically, I feel entirely better from UC, only a colonoscopy will show if this is the case. I can’t imagine having done this process without my blood work to guide me/us.
Good luck and best of care!
Susan

Yes, doctors are so reluctant to give vanco becasue they think it so strong or that a resistance will be created, BUT that is with IV vanco. Oral vanco doesn’t even show up in your blood levels, doesn’t create an immunity, and I’m told, has even been taken throughout pregnancy in several PSC patients. I wish more doctors would be brave enough to prescribe since many patients could benefit from it.

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Joki,
So, if we are on Vancomycin for PSC ingesting orally, and as I understand to be the truth from so much I’ve read here and elsewhere, it stays in our digestive system and does not go into our bloodstream, – then, everything people say about us building an immunity and therefore vancomycin not being an antibiotic we could be given at some future date, is not the case?? It would still work for CDiff and after liver transplant?
Best of care,
Susan

I took the liquid initially.
If insurance won’t cover, in good part, I’ll go back to liquid. I’ve just read so many positive things about the ANI brand and mixed reports about various liquids.
Thanks so much.
Best of care,
Susan

Sorry Susan, just saw your message to me. Yes, that’s exactly what I’ve hear from the doctors (the ones that have been given vanco for years). That it doesn’t show up in blood levels and no immunity is built. I’ve even heard that PSC patients take their vanco while pregnant and their babies are fine.

Thank you, Joki.
Best of care,
Susan

I wanted to update everyone about my 16 y/o son’s health status. I became anxious when my son’s symptoms such as pain, fatigue, diarrhea, nausea, and insomnia did not improve following the initiation of vancomycin therapy. I am so grateful for your responses and encouragement during my time of need.

My son started taking vancomycin Dec. 17. First, his physician prescribed vancomycin 125 mg four times daily. Gradually, with a little encouragement, his physician increased the dose of vancomycin to 1500 mg daily. We visited Mayo last month to have a procedure known as an Elastogram performed that measures liver fibrosis. The results were then compared to the same procedure that was performed in Jan. 2018. I have included the results below:

Mean liver stiffness: 2.12 kPa (previously 3.56 kPa)

Range: 2.06-2.24 kPa (previously 3.34-4.15 kPa)

Below is a scale:

Interpretation of MRE results

<2.5kPa = Normal

2.5 to 3.0 kPa = Normal or inflammation

Increased liver stiffness under appropriate clinical and laboratory findings is

compatible with liver fibrosis as below:

3.0 to 3.5 kPa = Stage 1-2 fibrosis

3.5 to 4 kPa = Stage 2-3 fibrosis

4 to 5 kPa = Stage 3-4 fibrosis

5 kPa = Stage 4 fibrosis

On Jan. 11, 2018, my son had between stage 2 and 3 liver disease. Closer to stage 3 liver disease. Stage 4 is liver failure. My son no longer has stageable liver disease. He went from being on the brink of liver failure to no stageable liver disease. He continues to have inflammation in the biliary tree of the liver but no stageable liver disease. His laboratory results are completely normal.

Unfortunately, the mayo doctor did not prescribe vancomycin and did not discuss whether the medication could be responsible for the dramatic results. My son is scheduled to meet with the physician who prescribed vancomycin in June to discuss the improvement in his liver fibrosis and what this means for the bigger picture. Has anyone else had these dramatic changes?

Dear KGray,
Sorry your son’s condition appears to be worsening. Just a couple of questions for clarity.
1- What form of PSC does your son have? Large Duct or Small Duct?

2- Has he had an actual liver biopsy yet to check for staging?

Thanks,

Mark

Sorry, for the confusion. His condition is improving… He was between stage 2 and 3 liver disease in Jan. 2018. Now, he has no scar tissue in the liver! No fibrosis. He had a liver biopsy in Nov. 2017 that also reported between stage 2 and 3 liver disease. He is diagnosed with small duct PSC. I’m sorry for any confusion. We are still in a state of shock that his liver fibrosis resolved after beginning vancomycin.

Congratulations and glad for your son. He can live his best years without worrying too much about his health now.

You are seeing significant improvements within less than 5 months of using vanco? Everyone will respond differently i guess and may need different dosing but it certainly is good to hear.

Cheers.

sr13,

Thank you for your response. He also takes ursodiol 300 mg in the am and 600 mg at night. He has taken ursodiol since Jan. 2018. Has anyone had an improvement in liver stiffness with ursodiol? Or at least this dramatic of an improvement? I attribute the improvement to the 5 month trial of vancomycin, but there is no way to know for certain. I was curious as to if others had had similar clinical improvements for any reason? Especially, if the clinical improvement was attributed to vancomycin?

Again, thank you for your positive message!