just started on urso

[sandgroundergirl]

Hi,

I was diagnosed last November with PBC and AIH I have just started on Urso this last month. Is it quite a while before it starts to kick in or take any effect ? Also how long should it be til I go to see my specialist again as they did not say. Surely they would see if I am okay on Urso or if its making any difference. I do not have the dreaded itch ( Thank goodness) although I do get tired occasionally. I am and determined to stay as I always have been, " Always on the go, cant relax," but i sometimes have to give in. I have noticed a bone in my wrist has become quite prominent and my knee locked when I was asleep one night. Boy did that wake me. My knees keep cracking and jumping out of place. Yes my joints are getting hammered I think. I dont like to keep going backwards and forwards to my gp, he isnt all that clued up on pbc anyway. This site is the best. My working week is 5 days @ 11 hours a day. my 2 days off consist of housework, shopping and calling in to tend to my elderly mother. I know soon enough I will have to slow down, but is it best to keep going ?? Some say yes some say no...

So how often should one go to see the consultant ? Should we be monitored on a regular basis ?

[Hidden]

The first year on Urso I was seen every three months by both my GP and my internist. I would have blood work done prior to the visit, so they both could see if there were any changes. I have also had ultrasounds done every three months and now every six months. I am also seeing both Doctors every six months now too. My liver panel test are looking good. In my case, the Specialist also prescribes milk thistle as well as a liver friendly diet. I am retired, so I don't know how I would feel if I was still working, but I am always on the go. Like you I do not have the itch, but have some minor aches in my knees and hands. By the way, welcome to the online community. This site has been such a wonderful thing for me, as I am sure it will continue to be for you. Keep the positive attitude going and anticipate wellness in your life. I am a firm believer that we have the power to heal and attitude matters.Best regards, Judi

[sandgroundergirl in reply to Hidden]

Thank you for taking the time to read my question and for your kind words of support.

[mumofthree]

When I was first diagnosed with PBC in Jan 2011 I was immediately put on URSO. I had a follow up appointment and blood tests 3 months later with my consultant, then again 6 months later and annually after that. I do not have regular bloods taken by the GP throughout the year like others on here seem to have. My GP told me they do not think it is necessary to check my bloods regularly but I am going to check that with my consultant when I see him in the next couple of months. To be honest my GP's have been pretty useless as far as the care they have provided with regards my PBC.

I take my hat off to you doing 5 x 11 hour shifts I struggle with my 3 x 7 hour shifts. As far as keeping going and being active is concerned just listen to your body it will soon let you know when you've done too much. Do what you want when you want..... do not let the PBC rule your life. When I was first diagnosed I was in denial and used to fight against my condition until I collapsed in work. My GP told me it was my body telling me that enough was enough and shutting itself down. She told me to listen to my body and if I needed to sleep I should just give in to it. It was not an easy thing to do as like you I was always on the go but in time you will learn to adapt. I don't beat myself up anymore if it takes me 2 or 3 days to clean my house whereas before I could have done it easily in a day. If I feel tired I have a sleep....not easy when in work though I really have to fight it there as I don't think my boss would be too pleased if I had a sleep throughout the working day...but when I get home I have to take a quick nap. Sometimes a 15 minute cat nap is sufficient other times I may be out for count for a few hours. When I go shopping or if I know I am going to be on my feet for a long time I just make sure I have plenty of comfort/coffee stops, I suffer for days after with the joint pain but its worth it just to do 'normal' things.

Take care of yourself and good luck and best wishes for the future

[sandgroundergirl in reply to mumofthree]

Thank you for taking the time to read my question and for your kind words of support.

My legs and feet are telling me to stop !! I have been woken up now a few nights on the trot with my legs and ankles aching. Do u get tingling sensations in your feet too ?

[mumofthree in reply to sandgroundergirl]

I've been told I have osteoarthritis in my hands and feet. I can see it on my hands because I have painful lumps on my fingers and can feel lumps under the skin on my wrists. Most days I experience a sort of numbness in my hands, fingers and wrists but other days its a throbbing sensation and really painful. My wrists are very weak and when lifting a saucepan I have to use two hands, I also have great difficulty with my fingers when open packaging.

As for my feet and ankles they ache all the time... if I am on my feet for more than an hour they get really painful and it feels as if my ankles are going to give underneath me and I just have to sit down. My feet on the other hand are the most painful, it feels as if I am walking on pebbles and get a burning sensation under them and tingling and shooting pains in my toes. The pain in my toes is a strange sensation, its like a stabbing, shooting pain that starts half way up my toe and up into the toe nail...its so painful when it happens I can't even touch my toe nail without being in excruciating pain. I tried explaining the pain to my rheumatologist but he could not understand why this would happen because he said if anything the pain should be radiating up from the foot into the toe which it does not feel like to me...so I am non of the wiser as to what causes it.

Have you tried rubbing some pain relief gel like Ibuleve or Voltarol into your legs and ankles I find that sometimes helps me or even a warm wheat bag or hot water bottle against the most painful areas. A wheat bag is great as you can mould it around your ankles.

Good luck hope this helps