Hi i was diagnosed with PBC 15 years ago by chance, I have responded well to Urso my Alkaline Phosphate is now 130 initially 400. I have very dry eyes get the itch off and on for a few days at a time i do get very fatigued and call myself a half a day person, I also have asthma that is well controlled and Spondylithesis in my lower spine which causes me pain every single day recently it has got to me so much i have been taking 400g ibuprofen which eases it enough to help me feel normal and do things i can't if i don't take them, my reasoning being do i want to live longer but not do much or damage my liver by taking ibuprofen which i know we are told not to take and I've tried to talk to my gastroenterologist but 2 weeks later still no reply after leaving a message with his secretary.
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Hi! Your results on the Urso are nothing short of amazing!!! Good for you! Not sure if you live in the US or not but there is a never ending debate on what to take - either Tylenol or Ibuprophen. Doctors will likely never agree. For some conditions like yours not being able to take NSAIDS really eliminates a lot of medications for many of us. I know I have knee problems and taking an NSAID would really help but...... Sorry to hear the communication is good bad with your doctor. Do you have a patient portal you can send a message to him that way? Thanks for sharing how well you're doing despite dealing with the all too common symptoms of having PBC.
Hi Donna no I live in the UK and thank you for replying, i agree it is doubtful i don't think they really want to commit themselves like you i also have knee problems I've had one full knee replacement the other one aches but i can manage that its just my back that gets me down, and the only way we can get in touch with our doctor is through his secretary she emails him then we have to wait for his reply the only time we get to see him is on annual appointment hope your as well as can be x
I had a knee replacement almost 2 years ago. My left one needs it but I have no intention of going thru that again. You only see a doctor yearly? I hope you are getting labs drawn at least every 6 months though. Do you feel this doctor really knows how to treat PBC?
Contacting your consultant in the UK, you say you left a message was that a phone call ? If so , I would suggest you email. A written record of your attempts are more likely to get a response. ( sad but true, they don’t like a paper trail to be ignored) I normally get a response within a couple of days when I email.
I injured my back during Covid and my GP told me to take ibuprofen, he didn’t have a problem with me taking it in the short term. I refused to take it on the basis of having PBC. The pain was so bad though I did end up using a topical version , so I do feel for you. Hope you get it sorted out soon.
Hi thank you for replying i don't have an email address to send to only his secretary tele number I do have a gp apt this friday so I'm going to ask him regarding the ibuprofen especially as of last night I've felt unwell with stomach ache and nausea although it is tailing off now just feeling tired not much energy. yes i have used voltarol doesn't seem to give much relief though but may have to just go back to that though if it is the ibuprofen affecting my stomach who knows you take care.
Sorry to hear you are in pain l live in the UK (Kent) it does get more and more difficult here to get answers from professionals. I have OA in my knee and was told than even using ibuprofen gel would be a problem but not given an alternative. Could you ask your GP to message your consultant for you if consultant doesn't recommend ibuprofen he/she could possibly suggest an alternative. Best wishes. By the way I'm 73 and now thinking at my age the odd painkiller if it helps with my daily life is worth a chance
Hi thank you for replying yes i have a gp apt on friday so i will ask I'm 70 and that was my reasoning behind taking the ibuprofen now I'm not so sure or maybe i should just take it when i know I'm needing to do more you take care.
here in the US we have product called Volaren cream. Even though it is advertised as an NSAID, only about 1-3% of it is absorbed into the liver. I know several PBC patients who have found this to be helpful for knee pain. My hep doc approved it as have many others. You might ask about using it. Also if you have access to any water exercises, they have been such a God send for my knees. Let us know if you find something that does help you.
Hi yes i have started to use the ibuprofen cream again also started back swimming again yesterday was hard but felt better for doing it so will be going 2 to 3 times a week
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