Just got back from the gastro....he started me on 10mg of methotrexate once a week last month after my blood tests went up dramatically after a month on Ursofalk. Those results are in my other post. Bilirubin is back down to 46 from 76 and the ALP has dropped from 768 to 642. GGT, AST and ALT also down (383, 224 and 432). He has decided to increase the dose from 10 to 15mg per week so will see how this all goes. I am still taking 1250mg of Ursofalk per day as well. Hopefully this combination therapy is working and proves to be a breakthrough. Is anyone else out there trying this combo? Have heard some doctors don't agree with using methotrexate.
Improved blood tests after a month on metho... - PBC Foundation
Improved blood tests after a month on methotrexate
Hi Skippy, no but have heard about it and there are many doctors who do think there is value in using it - your blood results appear to support that! Great news that your numbers have come down so significantly in such a short time, best of luck with your increase in dose and ongoing treatment.
Hi Skippy,
Really glad to hear your blood tests are all heading in the right direction. The combination seems to be working for you and that's all that matters ! As I mentioned in an earlier post I have seen it used in other autuimmune conditions - keep us up to date on how your bloods progress.
Cheers and best of luck from Karaliz in Melbourne.
Thanks Karaliz.....yes, great news with my blood tests. Have you tried this combination? More blood tests in a month.....will get results at next appointment on 1.8.13 so will let you know.
Your positive outlook is wonderful Skippy, I read your response below - inspiring attitude ! No, my consultant has never considered Metho but then although my LFTS have deteriorated over last few years, bilirubin has always been in normal range. Your high bilirubin may have been a significant factor in your Dr's decision ?? As I am now on OCA trial , no new drugs can be introduced at the moment. Do you find you've had any side effects with the Metho, Skippy ?
I don't think so. Still feel the same, if not a bit better. I am tired at night as usual but the itch is ok (only sometimes on the soles of my feet). I sometimes have a slight ache around the liver area but nothing drastic. I got a couple of pimples on my face (too old for those) so maybe that was a side effect. But who knows? I do think he was a bit shocked with the bilirubin levels when they jumped to 76.....must say so was I. He had mentioned methotrexate at the previous visit though so I think it was always at the back of his mind. Probably due to my initial high bilirubin levels ALP etc which sometimes is an indicator of not responding completely to the Ursofalk. When are you off the trial? Maybe try this next......
I'm sure he was shocked. He, as well as you, must have been relieved to see the bilirubin start to come down.
Re the trial, phase one finishes in December when those on the placebo are withdrawn. Those on the active arms continue for another 5 years I believe while the long term effects are collected and studied.
Will know more at end of the year.
Thanks Skippy, all the best for next set of bloods - everything crossed for you !
Hi to u sounds like he is trying to get ur levels better.. As ur in Sydney and I am which gastro r u seeing? I have to wait till end of this month going to westmead do they offer u comfort by the way? Think u said April u found out not that long ago, keep chatting think it helps me just being able to read this site otherwise its a lonely unknown road.. How does ur family deal with this to support u? My twin is waiting to hear re her results .. Stay in touch
Hi Twiny.... Am I allowed to give names over this site? I am more than happy to give you his name. Have you got an email I could send the details to? My husband is really good and my son is 12 so has a bit of an idea about PBC but not all the details. When I got the bad results after a month on Ursofalk we were of course disappointed. I tend to get even more determined when things go wrong though and this is probably a good thing as it pushes you forward. This website is great as well and being able to talk to people with the same thing is great and provides heaps of support. Try and see the glass as half full rather than half empty. Look for the positive studies if you read things on the Internet. There are people out there working on things. What I love about my gastro is that he is willing to try methotrexate. He said yesterday that he tried a treatment for Crohn's disease back in the 80s when everyone was questioning it's benefits and now it is one of the main treatments. Yes, he is not a young guy. Nothing ventured, nothing gained. Yes, the road can be unknown but don't let it be lonely. There are plenty of us out there to chat with and new treatments will be developed. There was a time when they couldn't even transplant a liver and look now. Amazing!
Hi my email is alcooper59@gmail.com
It's ok u don't have to give me his name though I do have someone to see . So great to know ur in Sydney it's like no one has it here seems all r in the uk . Trying to get on with life each day have my up's and downs bet u do think maybe once the spec tells me def I may start to relax a bit more and get on with treatment like urself here's hoping ..