Rocko,
If you still have a valid prescription on file, why don’t you ask the pharmacist to fill just enough to get you by until your insurance will cover the cost. Just pay it out of pocket. It’s certainly worth the cost than suffering the itch. It’ll drive you crazy for sure if you have to wait a week. Ask to speak to the Pharmacy manager if need be. Take your current bottle with you to prove when it was filled last. Not sure what the issue is, they may have even counted out too few capsules. I often would double check the pharmacist on the quantity of Rifampin due to the cost of them when I was having to pay out of pocket. If I still had some I’d give them to you, but I don’t. Alternately call your doctors office and describe the urgency of the issue. Maybe they will write a new Rx to get you by. Hope this helps.
Wishing you a very Merry Christmas and Happy New Year!
Rifampin was working for about 6 months but has now stopped working. My liver enzymes are elevated but aren’t raising significantly to do an ERCP. Doctor has ordered more blood work more frequently and also MRI to see what’s going on. He is almost out of ideas for everything going on. Seems like every doctors appointment more bad news and more health issues come up. Has anyone had any issues with severe raise in cholesterol levels? I am about to turn 30 this year and it just happened all of a sudden and have marks around my eye which led to us getting this tested.
Briarrann,
Take a look at this list of medications that may help with your itching. I always used Rifampin. Also, are you on URSODIOL for controlling your LFT levels? When was the last time you had an ERCP? Also, are you under the care of a hepatologist, not just a regular GI for your PSC?
I took urso but had some reactions to it so I had to stop taking it. I do see a hepatoligist. I haven’t had an ERCP yet. I have had every other test under the sun.
If your bilirubin is high, say over 4.0, and with all the itching you are having, you are certainly due for an ERCP. They will go in and balloon dilate the ducts, clean all the strictures out the best they can and get that bile flowing again. You will feel much, much better. I had to have 5 of these over my years with PSC prior to transplant. Down the road, there may come a day when the ERCP’s are not doing any good due to disease progression, but for now they do provide a quality of life for you. I’d certainly ask your hepatologist about pursuing that possibility.
I think the plan is to see if the MRI says anything. I had two surgeries last year so I’m trying to stay away from being put out for anything even if it doesn’t mean opening me up. Was a rough year last year and this one isn’t shaping up so good already.
Hi Mark,
Hope you had a Merry Christmas and Happy New Year.
I continue to take RIfampin and it works about 90%. I still have an urge to scratch myself, but I can usually not react.
I still occasionally have muscle pain and severe foot and legs cramps. It is not nightly like prior to Rifampin. I have ran out of the medication and forgot to pick it up at the pharmacy for 3 or 4 days. Then the muscle cramps come back.
I was just prescribed Tizanidine for muscle pain. I was in car accident and had a bad whiplash. I had surgery on both rotator cuffs 20 years ago, so I am getting shoulder and neck muscle pain.
Getting older really sucks. I wish I wouldn’t have abused my body when I was younger, but then again, I would do it all over again, lol.
I hope you are well.
Rocko (Tim)
Tim,
It was good to hear from you again. I’m glad the Rifampin is working for you. Keeping your fingernails trimmed close will also help you with the urge to scratch from hurting yourself.
In thinking of your foot and leg cramps, are you taking Magnesium? If not, I’d suggest getting Magnesium Citrate and take 800 mg in the evening maybe an hour or so before bedtime. In time that should help. Also, keeping some tonic water w/Quinine as one of the ingredients is good to take several swallows if the cramps come on bad, the kind that force you up and having to walk around the house to get them to calm down. Wal-Mart has their own brand in small bottles. Just make sure it has the Quinine. It tastes nasty but over time you will get used to that as well.
If you are interested in a good source for the Magnesium, here’s a link where I buy mine. I still have to take it post-transplant due to the meds I’m on to prevent rejection. http://www.doctorvitaminstore.com/4260_MagCitrate.html
I get the 200 count. You buy one bottle and get two bottles free. A good deal.
Take care and please keep in touch. Let me know if you need anything.
Hello Mark,
I was taking Magnesium Citrate, but told to stop due to elevated levels in my blood.
Well unfortunately, the itching is returning along with more instances of leg/foot cramps. I have been wearing long sleeves so I am not scratching myself raw, but I tend to bruise instead from rubbing the area to hard.
I called my doctor this a.m. and left a v/m requesting a change in my dosage of Rifampin (300 mg daily to 450 or 600 mg). I have not heard back.
I have tried Quinine water, taste bad is an understatement.
I hope you continue to manage your symptoms and your transplant goes well.
Tim
Tim,
I agree with you that it sounds like your dosage needs to be increased. The only way mine could be controlled was to take 300 mg of Rifampin twice a day, not just once. There were times I thought I could get by on one and as soon as I started reducing the dosage, within a few days the itch was back with a vengeance.
Just for clarification, I DID have my transplant in July, 2015. I am doing well and am very thankful. I have to be careful regarding germs, colds, etc. but my new liver is working like a charm. My biggest challenge now post-transplant is to lose some more weight.
Keep in touch Tim and let me know how things go with your doc.
The itching has been the most persistent symptom I’ve battled. At its worst it keeps me from sleeping more than 20 minutes at a time and leaves me with scars all over my body from scratching.
When I first took Cholestyramine it helped almost magically. Unfortunately as my numbers have increased (billirubin from 4-9) the effectiveness has been reduced. I’m taking 4 gram packs 3 times a day. Considering increasing that.
I’m interested in Rifampin. Do people take that with Cholestyramine? Or is it an alternative?
One non-drug treatment that has given me some relief is soaking in thermal hot pools. It is not an enduring relief but anything that helps me feel close to normal for any period of time is welcome.
pohehe,
While Cholestryamine helps many of our PSC patients, it doesn’t work for all. We all seem to respond so differently. If you are going to try Rifampin, the doctor will probably not want you to use it at the same time. I’d suggest asking for 300 mg, twice a day of the Rifampin. It eliminated my itching by 98% most of the time. I hope it helps you.
From what you have described, if your bilirubin is upwards towards 9, you more than likely need an ERCP. You’ve bound to have a pretty bad blockage in your bile ducts. I’d really encourage you to check into this soon. What is your current MELD score?
I had an ERCP scheduled but after a completed MRCP they told me they wouldn’t be able to do any treatment of the blockages because they were so diverse that it would be more risky than helpful.
My MELD has gone quickly from 12 to 15 to 20. More blood tests scheduled this coming week.