What are your experiences of blood tests wh... - PBC Foundation
What are your experiences of blood tests when first put on URSO? My GP says I don't need any until I see my consultant at end of February?
Had it taken about 6weeks after if memory serves and it showed that levels where all slightly better it made a lot of difference at the time I remember crying all the way back to work. If you have to pay for your prescriptions then it does give you the incentive to keep getting them
My early apps were 3 months apart, so did not have any bloods until just before each appt. now every 6 months, again bloods just before. My gp doesnt organise the blood tests, just gets sent a letter from the consultant following my appt. if you have them earlier will your gp send them to the consultant? Every trust seems to work a different way don't they!
I am sure the urso will help.
Lou
I was diagnosed 5 weeks ago. The consultant put me on Ursofalk straight away and said that I should get my bloods done monthly until December when I have my next consultants appointment. I had the first bloods done last week and the liver enzymes have come down quite dramatically. I am not sure about bilirubin or anything else.
I don't think it will make any difference waiting until your consultant appt for blood tests. Urso usually help levels but there wouldn't be anything further to done so you may as well wait. Everyone who has PBC is seen at different intervals depending on who you see and how you are, so hang on in there !
I was having my bloods every month, the Urso bought all my liver enzymes right down, I am now on 3 monthly appts and bloods.
I was diagnosed Dec 2010 and started urso. I was informed by my GP 2mths after seeing the hospital consultant who did the AMA test and then said he'd see me at a later date. Never being in the hospital system previously (except routine pregnancy) I presumed he would see me and inform me but he wrote to the GP and I got the call to go and see him.
I then received a new appt thru the post to see the hospital consultant at a later date which was 2mths from starting urso. My hospital doctor did say to me when I saw him Feb 2011 that he expected to have bloods repeated every 3mths in the first yr. I came to an agreement I'd return to see him in 6mths time as opposed to visiting the hospital every 3mths for the time being. So he gave me a blood envelope that he wrote on what tests he required in the following 3mths which I took to the GPs when the time came.
I had good results 2mths after starting urso and also the following 3mths and then they started to wane and continued doing so until I'd been on urso a yr. I get print-outs of them which I would advise you to do (but don't get overly-down about them, I never did, couldn't see the point, just made me want to try harder and see if I could help myself at all, ie a better daily routine, changing certain foods, etc). By Feb this yr just over a yr on urso my bloods were roughly the same as what they were after just 2mths on urso. I got asked to have them repeated in 2mths but it was actually 3mths when I returned and they had gone right back down to what some were the prev yr at their best with urso and 2 were slightly better. Recent repeats, altho' the liver (and bone) were missed and I have to return next wk for those, the GGT was still as good as the last 3mths and according to the print-out and comparison of liver to GGT and also the GP reckons, these will just show everything to be as good.
Personally for me, I just go with how I feel. If you start to feel better using urso then that is a good sign to me. I know during last yr when I had results that weren't as good as the initial start I still felt great and apparently there is some 'normal range' for us with PBC using urso and for some we are never going to reach what is considered a normal range but we are also doing great with the urso.
Hi Agardener,
I've only been on urso since march and had 1 blood test since, however my bloods halved in 2 weeks! I am due to go back to specialist 23 Oct so we will see what the next set of tests show!
Mel
Hi Agardiner!
I was diagnosed 3 months after a really high set of blood test results in 2005. Had blood tests every month for 6 months to check what was happening and also to see if Urso was 'doing the trick'.
Didn't enjoy the procedure so really glad when they requested only every 3 months. However other health complications have meant it has stayed at this level and note on my screen when I go means that they always do LFTs.
Don't get to hooked up on them as long as they are going in the right direction!
Regards
Hi I had mine done every 3 months the first year - it took URSO a year to bring me into normal range but it started to work nearly straight away. Now that things are ticking along nicely they are done every 6 months. Consultant gives me the envelope and I go to GP to get blood taken a few weeks before my nxt appnt, then when I go to see him he has the results in front of him. As long as you take the URSO things should be improving.
I had mine done every six months at the beginning, then yearly for about 15yrs. I even had gone off them for awhile at various times because I didn't have insurance and couldn't afford them. Then I was able to get them free through the pharmacutical company. I was off for over a year when that happened, my tests were high and the doctor said it would take a few months to build in my system. He was right, although I had been a little nervous. I still take them however my dose had increased from 500mg to 1250mg daily.
Many thanks for all your replies - varied to say the least. I suppose I just want reassurance that things are moving in the right direction after waiting since January for a diagnosis!
Before my diagnosis, my Alkaline Phosphatase was more than 500, after getting started on Ursodiol. It came down to around 300. Don't remember how long it took for that was in 2003. It has continued to stay around that level.
Magnolia
Hi
Just started the urso and need a blood test every 4 weeks to see how liver copes with it. That is what my gp has told me.
