My son Phillip was awake all night last night itching. He has UC and possible small bile duct PSC. He is on Ursodiol and Azathiaprine. His Eosinophils have been elevated recently and he is currently doing an Ova Para stool study to check for parasites. Does anybody have any experience with parasites?
How old is your son? Why is he taking Urso without a PSC diagnosis? Has he been anywhere where he might have been exposed to parasites? If not might be a red herring.
Seuss,
Sorry I can’t help with the parasites question, but itching is a symptom of this crappy disease. There’s are medicines which can help the itch. Something which concerns me is the taking of Ursodiol. Shortly before I received my liver the doctors took me off the Urso. They stated that it had no benefits at the high dose which I was taking (3000mg/day) and in fact clinical studies showed a higher incidence of cancer with its use.
Mike in KY
My daughter was first told she had parasites - she did not. She was next put on azathioprine and urso (she has early small duct PSC). Did not help her UC. She is now on oral vancomycin (500mg 3x/day) and is clinically and endoscopically normal. She does not need any other meds. Check into this treatment for your son. Let me know if you need help. How old is your son?
After much testing…as it turns out Phillip does Not have Parasites.
My son is about to turn 20.
Cactusgirl said:
My daughter was first told she had parasites - she did not. She was next put on azathioprine and urso (she has early small duct PSC). Did not help her UC. She is now on oral vancomycin (500mg 3x/day) and is clinically and endoscopically normal. She does not need any other meds. Check into this treatment for your son. Let me know if you need help. How old is your son?
As I mentioned my daughter went through same testing for parasites. She is now on oral vancomycin (OV) and no other meds for her UC or PSC.
You said that your son may have small duct PSC. On what basis do you believe this to be true? Has he had an MRCP or biopsy? Are any of his liver biochemistries abnormal other than eosinophils? The itching may be progression of the PSC if that is what he has. What team of docs does he have? Are they familiar with Dr. Kenneth Cox's vanco treatment protocol?
My son has had a liver biopsy and his liver enzymes were elevated to as hight as 500 for 1 whole year. The liver enzymes have been normal for the past year while on URSO. He sees Dr. Roman Perri at Vanderbilt University in Nashville. I have talked our doctors about Vancomycin but they are reluctant to place him on an antibiotic long term.
Cactusgirl said:
As I mentioned my daughter went through same testing for parasites. She is now on oral vancomycin (OV) and no other meds for her UC or PSC.
You said that your son may have small duct PSC. On what basis do you believe this to be true? Has he had an MRCP or biopsy? Are any of his liver biochemistries abnormal other than eosinophils? The itching may be progression of the PSC if that is what he has. What team of docs does he have? Are they familiar with Dr. Kenneth Cox’s vanco treatment protocol?
Your son is likely still considered a pediatric patient. How is his UC? The risk of being on OV long term is likely significantly less than the risk of his PSC progressing and of being on Azathioprine. Dr. Cox has had patients on OV for 20 years with no issues and no progression of their PSC. If you want more information let me know. My daughter's docs have all been stunned with her healing; neither her hepatologist nor her GI recommended the OV, I insisted upon it. Now they do not recommend any change to her treatment.
They found a polyp in May at his annual colonoscopy, but they decided not to remove it. The biopsies came back clear and they said it was an inflamatory polyp. He hasn’t had a UC flare in a long time.
Hi Cactusgirl-
My son (16) has been on oral vanco for six months. His doctor has agreed to try it upon our request, and he seems to have responded well. However, he is sort of taking dual therapy - the traditional steroid/imuran as well as the vanco. I'm curious about being just on vanco - we are thinking of trying to remove the steroid, but I thought that that imuran was here to stay. Was there any discussion in your daughter's case of staying on azathioprine along with the vanco, and if so, how did you decide to take her off it? We'd like to reduce the meds as much as possible... thanks!
Cactusgirl said:
My daughter was first told she had parasites - she did not. She was next put on azathioprine and urso (she has early small duct PSC). Did not help her UC. She is now on oral vancomycin (500mg 3x/day) and is clinically and endoscopically normal. She does not need any other meds. Check into this treatment for your son. Let me know if you need help. How old is your son?
None, she reacted poorly to the azathioprine - after 10 days she developed pancreatitis. Her original doc wanted to next try 6-mp and then remicade. He did not want to try the OV. So I changed docs. Her new doc said she should not take 6mp or remicade but should only take the OV. If the inflammation in her colon did not respond to that treatment would consider an additional treatment. She has however responded beautifully. Her response is like that of all of Dr. Cox's patients.
I would strive to reduce meds....what dose of OV is he on?
He's on 500 3x a day. His inflammation is gone - last colonoscopy was said to look "perfect" as though he'd never been sick. He tried 6-mp for a few days, but was violently ill and in trying to find the source, we took out everything we could. In retrospect, I suspect it was the prednisone which he had a very tough time with. But there seems to be no need for the 6-mp. Will have to start asking about trying just the OV. That would be nice... what dose is your daughter now on?
mom to psc teen said:
He's on 500 3x a day. His inflammation is gone - last colonoscopy was said to look "perfect" as though he'd never been sick. He tried 6-mp for a few days, but was violently ill and in trying to find the source, we took out everything we could. In retrospect, I suspect it was the prednisone which he had a very tough time with. But there seems to be no need for the 6-mp. Will have to start asking about trying just the OV. That would be nice... what dose is your daughter now on?
Reread your post. If your son was violently ill after starting the 6-mp it may have been the 6-mp, not the prednisone. That said, neither is good to be on if he does not have to be. My daughter became violently ill on the azathioprine (probably pancreatitis, which is a possible side effect of azathioprine and 6-mp). Azathioprine is a weaker form of 6-mp.
It (Urso) showed a higher incidence of what kind of cancer? I have heard it lowers the risk of cancer in the colon...
MEM said:
Seuss,
Sorry I can't help with the parasites question, but itching is a symptom of this crappy disease. There's are medicines which can help the itch. Something which concerns me is the taking of Ursodiol. Shortly before I received my liver the doctors took me off the Urso. They stated that it had no benefits at the high dose which I was taking (3000mg/day) and in fact clinical studies showed a higher incidence of cancer with its use.
Mike in KY
Here is an excerpt from
"Pathogenesis of Primary Sclerosing Cholangitis and Advances in Diagnosis and Management" by JOHN E. EATON,1 JAYANT A. TALWALKAR,1 KONSTANTINOS N. LAZARIDIS,1 GREGORY J. GORES,1 and KEITH D. LINDOR2 Sept 2013
"Ursodeoxycholic Acid
All randomized controlled trials of agents designed to prevent the progression of PSC have produced negative results, despite promising results from open-label precursor studies. The most commonly studied agent is ursodeoxycholic acid (UDCA), which significantly slows progression of other chronic biliary diseases such as primary biliary cirrhosis (Table 2).99–103 A European study did not show increased survival times of patients with PSC treated with 17–23 mg/kg/day1 UDCA compared with placebo. 102 However, this study was underpowered. Unexpectedly, a North American study was stopped early because 28 to 30 mg/kg/day1 UDCA increased the risk of disease progression 2-fold compared with placebo; study end points included cirrhosis, varices, cholangiocarcinoma, liver transplantation, or death. 103 The increase in adverse events appeared to primarily occur in patients with early-stage disease compared with similar patients in the placebo group. 104 Furthermore, high-dose UDCA was associated with an increased risk of CRN among patients with UC, providing further evidence for the toxicity of UDCA at this weight-based dosing range. 105
A meta-analysis of 8 trials determined that treatment with UDCA did not slow the progression of PSC.106 Although there is no clear role for UDCA therapy at this time, the safety profile of moderate-dose UDCA(17–23mg/kg/day1) indicates that it could be worth further examination in prospective trials. The American Association for the Study of Liver Diseases recommends against UDCA therapy for PSC, whereas the European Association for the Study of Liver Diseases does not recommend for or against treatment with UDCA based on the limited data.12,107"
Sonia96 said:
It (Urso) showed a higher incidence of what kind of cancer? I have heard it lowers the risk of cancer in the colon...
MEM said:Seuss,
Sorry I can't help with the parasites question, but itching is a symptom of this crappy disease. There's are medicines which can help the itch. Something which concerns me is the taking of Ursodiol. Shortly before I received my liver the doctors took me off the Urso. They stated that it had no benefits at the high dose which I was taking (3000mg/day) and in fact clinical studies showed a higher incidence of cancer with its use.
Mike in KY
@CactusGirl-
Can you please provide the link this information came from. Thank you.
Pathogenesis of Primary Sclerosing Cholangitis and Advances in Diagnosis and Management
JOHN E. EATON,1 JAYANT A. TALWALKAR,1 KONSTANTINOS N. LAZARIDIS,1 GREGORY J. GORES,1 and KEITH D. LINDOR2
1Division of Gastroenterology and Hepatology, Mayo Clinic, Rochester, Minnesota; and 2Division of Hepatology, Mayo Clinic in Arizona, Phoenix, Arizona
GASTROENTEROLOGY 2013;145:521-536
I am attaching the article
75-LindorPathogenesisofPSCSep13.pdf (1.43 MB)Thank you, Cactusgirl. It seems ridiculous to fully take ones health out of a trained doctor's. However, more and more we see the mistakes, oversights and lack of interest in our research/findings which make us uneasy to hand over our life to them entirely.