Hello Everyone, I am a 35 year old male diagnosed with PSC. I have been taking vanco 4x 125 along with 1500mg urso. About once or twice a month I wake up extremely nauseated with stomach pain and lower back pain. It usually lasts a day or two. I get the chills and can barely stand up straight. I think its different than a cholangitis attack but who knows. Trying to figure out if this is a side effect of the vanco, i have read about kidney infections while on vanco so Im wondering if its that. Any input is great. Thanks! Oh don’t have confirmed UC or IBD although sometimes I think my body thinks otgerwise.
The symptoms you described were common with me and my PSC, and I never did get UC. One thing that sometimes helped me when I woke up like that was to drink some orange or apple juice or maybe eat on some fruit just to get something in my stomach. That may or may not bring you any relief. When I experienced lower back pain especially on the right side and increased nausea, for me it meant my bilirubin was climbing and I was headed for another ERCP very soon. The chills and fever do concern me. Make sure you have a filled prescription of something like Cipro on hand at all times, and if you fever gets above 101.5 and upwards start on the antibiotic and head to the ER. You may be having a cholongitis attack.
One medication that helps with nausea without the drowsiness is Zofran. You may want to ask your hepatologist about a prescription for that. Hope you get to feeling better soon.
Hi! I’m glad to hear that you started taking vanco (although your dosage is very small). Your symptoms are most likely caused by cholangitis, due to your PSC. It’s extremely unlikely to get such side effects from oral vancomycin treatment. Therefor I’d definitely recommend getting in touch with your doctor about this matter.
Thank you both for the insight especially you Mark. I had Cipro on hand before but the multiple hematologists I’ve seen never seemed to stress to take it and I had to request it. I’ve never associated the lower back-pain with bilirubin increase, good to know moving forward. Is there a recommended dose of Vanco that is being taken, so I can ask my Dr to increase dosage. Mark I have yet to have an ERCP procedure, I guess i may look into that as well.
Hi! In regards to vanco dosage, most people take 1000-1500 mg per day.
What do your liver function tests look like on your current treatment protocol? If your numbers aren’t normal, you should ask your doctor about a vanco dosage increase. The Stanford protocol starts patients at 1500mg/day and slowly reduces dose after a year of normal lab values.
What brand of vancomycin are you taking? Many of the generic gel caps dissolve more slowly and are not as effective for our purposes.
Liver function tests are Meld score 13,
Alk 199, ASPartate 69, Alanine 66,
Billi total 2.2. Just got the Vanco increased. I have been taking the actual Vanco brand. Does anyone know what treatment is provides during an er visit for a cholangitis attack? I believe I have had 2-3 per six month period but never thought about going to ER. Have also filled a Cipro script in case another attack occurs. Has anyone found anything that can bring bilirubin down?
Although your MELD up some the bilirubin at only 2.2 doesn’t seem to indicate a major blockage. Now of course we are all somewhat different in our tolerances, etc. For me when it got up about 4 to 4.5 I knew I needed an ERCP and that was the only thing that would bring the bilirubin down. Have you ever had one of those?
For a PSC patient the ALK is not all that high. What is your INR?
Hi! I would discuss with your doctor about increasing your Vanco dose to at least 500x3. Also confirm that you are taking ANI brand generic. My 22year old daughter takes 750x3.
Hey Mark, thanks for all information. It’s amazing how you keep up and communicate with everyone on the forum. You are awesome and thank you. I don’t know the IRN. I have yet to the an ERCP because I was worried about potential dangers. From what I read and researched it seemed like I would be best served to wait until I absolutely had to do it. If you have insight or coukd share your experience I would live to hear about it.
Vanco Alvogen brand 250 x 6 starting tomorrow. Thanks for the advice.
Disregard read your ERCP comments on a few other posts and got some additional information.
Why Alvogen brand? If you don’t respond try ANI brand. My daughter did not do well on Alvogen. Call me if you want to learn more. 602-758-7525
As we all know everyone with PSC has different experiences. Your Alp is very low which indicates minimal blockage. But, your bilirubin is high, indicating some kind of liver disease. Maybe it’s not PSC. Have you had an MRI or ultrasound that shows beading or a dominant stricture in your bile ducts? ERCP is no longer used for diagnosis. There are numerous liver diseases. Is your doctor sure you have PSC.
I’ve had PSC for 18 years with alp as high as 2000 but normal bilirubin and a “normal” MELD. But the liver is becoming cirrhotic. I’ve been hospitalized for cholangitis. The first treatment is IV antibiotics and no food or water. They do an ercp to open blockage if the infection persists for a day or two. As you mentioned, ercps are risky. I get blood infections afterward.
Usually when I get ruq pain, fever, and chills the Cipro takes care of it. My doctor advised me to go to ER only if my temp is over 102 F. At our ER triage will send you to the back of the line unless fever is over 102.