Anybody knows how to manage taking Cipro and cholestyramine together? my son has to take cholestyramine 3x/day, and Cipro twice a day. I'm giving him the Cipro in the morning with a cracker (he wakes up at 9:00) then I wait till 10 to give him the Cholestyramine followed with breakfast. He takes his second Cholestyramine at about 4:00 PM (and he gets a stomach ache). I find I can't give him a third dose of Cholestyramine as I read that one needs to wait 4-6 hours after Cholestyramine to take a medicine. I give him his second Cipro at 9.
The problem with this schedule is that he is not taking Cholestyramine before dinner and that he was itchy tonight (although he doesn't eat much in the evening, and is on a low fat diet). It is a difficult situation.
My son John is 13. He was just diagnosed with early stage PSC (no strictures). Right now he still has abnormal liver enzymes and his main symptom is intense itching.
We have an appt with dr. Cox in early October.
I would try to contact a rep for your prescribing doctor asking that he/she work a simple schedule out with the hospital's nutritionist. They are prescribing drugs so they need to educate you on using them properly in alignment with proper nutrition. I have trouble seeing my 31 year old fiance eats what and when I need him to for optimal benefit and drug timings. To know you are doing the same, and having your baby deal with this complicated condition truly touches my heart.Your son is lucky to have you. God bless. Good luck finding an answer to your issue.
Thanks for your answer Gloria. John has stopped Cholestyramine all together because of his stomach issues and the itching has improved a lot with the Cipro. However, we went to his doc yesterday (whom I abhor, the most negative person you will ever meet) and he has lost 10% of his weight in the past month. She said to feed him fat for him to gain weight. Now I have kept him on a low fat diet because of the pancreatitis and the itching. He had a pediasure and a treat in the afternoon (15 grams of fat all together) and the itching was back in the evening. Does anyone have tips as to how many grams of fat are ok in a meal?
John's common bile duct is narrowed and he has abnormal liver enzymes. The MRCP showed that his pancreas is still inflamed but better. His pancreatic enzymes are now normal. The MRCP was inconclusive as to the PSC diagnosis (not to worry, his doc reminds us constantly that he has PSC and cholangitis). The docs at UCSF didn't want to do the ERCP while the pancreas is inflamed. They did mention that the bile duct could be narrowed because of the pancreatitis (has anyone ever seen that?) but his doc doesn't want us to entertain this possibility.
We ARE changing docs by the way. We are lucky to be living in the bay area and have an appt with Dr. Cox in October. I've been trying to get an earlier appointment through the PSC foundation as we can't stand his gastro anymore.
Marie (sorry I had to rant...)
If your son itches in response to a higher fat diet, then I'd continue with the low fat approach. I don't think anyone can give you a number regarding the amount of fat per meal because the amount of fat/sugar/glutin a PSC patient tolerates is highly individual. In my case, when my common hepatic duct was mostly occluded, I couldn't tolerate more than 30g fat/day without tempting symptoms or a cholangitis attack.
Osteoporosis is a big risk with PSC to begin with and a low fat diet further hinders the absorption of vitamin D. Make sure to keep tabs on Vitamin D levels. A good way to assist with fat soluble vitamin absorption and get additional calories while on a low fat diet is by taking a medium chain fat supplement (MCT). MCT fats get absorbed directly in the small intestine without the need of liver bile so they won't cause things to get backed up in the biliary tract.
Dr. Cox is fantastic--you will be in good hands.
Thanks for your feedback JTB. I have a call in to the doc regarding MCTs. It does seem that 30 g/fat per day is too much for my son, but he can tolerate carbs,
You say: "when my common hepatic duct was mostly occluded". So ir is not occluded anymore? what did you do to open it up?
I've had PSC for 16 years. My suggestion is to have him eat more in the evenings or whenever he's itchy.
Does he eat something with the Cholestyramine at 4:00 pm? I used to take it with a tall glass of orange juice, or with yogurt or apple sauce. Cholestyramine made no difference for me, by the way. If it does have an effect, my understanding is that it isn't immediate. It takes three weeks to notice any change, they told me. It's the overall amount in your system that counts. So, his not taking a dose before dinner, in my opinion, does not affect his itchiness that night.
In my opinion, totally arrived at from my own experiences, it is very important to keep the digestive system moving to avoid itchiness. That means eating very often. Perhaps a hot bowl of oatmeal in the evening at 8 pm or 9 pm (if he can have it with the Cipro) will help, or some bran cereal.
As for fat in the diet, I wonder if you might try avocado with his breakfast. I put in on bread, and put a poached egg on top of it.
Marie - for me, the trick to getting back to normal was oral Vancomycin. I'm very glad you and your son will be visiting Dr. Cox in the fall.
We've been talking about Dr. Cox as one would talk about the Messiah at our house :-)
I've been trying to move up our appointment and hope that we'll see him in the next 2 weeks. Right now I'm feeling hopeful that we'll be able to tame the beast with Vanco in the short term and maybe Nor Urso in the longer term. Keeping my fingers and toes crossed. (John absolutely cannot tolerate Urso, it increases his itching to an unbearable level)