First time today I've been given urso for 3... - PBC Foundation
First time today I've been given urso for 3 months but no blood tests to see how. My liver is coping is this normal for pbc
I asked my GP just 2 weeks ago about how often I should be having blood tests because I am not seeing my Gastro Consultant until next June (12 month appointment). I was told once a year is enough. This concerns me because reading on here others seem to be tested 3-6 monthly. When I mentioned that to her she said it was probably because they are more poorly than me...I don't think this was a very convincing response. Surely the GP's should be keeping a regular check in between the gastro appointments. I have to request my script on a monthly basis.
When you first started urso was your blood checked monthly most people's you read about had monthly checks that's what worries me I've no blood check until february
Hello.
I wouldn't worry overly about when you next go for blood check. I'd go with how I feel and Feb isn't that long off really.
I suppose it has to be noted here that PBC is apparently a slow progressive condition and if you had a worrying blood result at your last check then you'd prob have been advised to have one sooner rather than later.
Hello.
I started on urso Dec 2010 and the gastro did say Oct 2010 when he took the AMA test he would see me with the results in the 'near future'. The GP surgery contacted me Dec 2010 saying I had to go in and see him as the gastro wanted me to start medication.
I received an appt for a repeat hosp visit for Feb 2011 and had repeat blood test, first from starting urso. I was then advised the next one would be 3mths from that as it is apparently the norm in the first yr to have more frequent blood repeats to note how the urso is starting to perform.
Because my blood results started to incline slightly again after being on urso for 9mths., after the one at the 12mth mark which also showed again slight incline again, I was advised to have the next one again in 3mths. I had a fantastic result with my repeat May this yr but the GP wanted to repeat again in 3mths as he wanted to recheck the HB level that was just a point below normal range.
My recent repeats have showed a slight incline so it will be another 3/4mths before I have the next repeats. I think with this PBC I do think that a certain amount of time is going to be required to have some idea at present how the urso may be performing and given the differing times of seasons, I do think that has something to do with the inclines then the declines as we all have to agree that we all do things slightly different in winter for eg than we do in summer. I think for me mine are going to incline again at the next repeats but then come next May or thereabouts on repeats, they will prob have declined again. I still think that part of this PBC is how you are feeling on the whole regardless. I don't take as much notice of the bloods these days, for me in particular I wouldn't deem it healthy (excuse the pun there !) to worry and panic over them each time, I wouldn't then be able to get by day-to-day and every day nearly I am reminded I am supposed to have this PBC when evening comes and I feel itchy and a bit restless.
I did ask the gastro about the repeat bloods by the way when I last saw him Oct 2011 (I got him to agree that for now I would just see the GP with not being so problematic at present), he said that some patients do have repeats at a more spaced out interval but from what he said, it seems that that is for patients with PBC who have had it awhile and at the time there is some picture as to how they are getting along. I suppose for me I'd have to have probably a yr of pretty levelled results for a GP to perhaps advise perhaps a 6mths repeat. Altho' he advises at present the 3mths repeat, for me when I did receive the great result May it was actually Sept betime I booked the next repeat so that would have been a 4mth gap for me.
No, I started on URSO in January 2011...I didn't have bloods taken until the beginning of June 2011 but that was because I was admitted to hospital. I was not due to have them until July 2011 when I went back to the Gastro Consultant. Gastro gave me an appointment for 12 months later with instruction to have bloods taken 2 weeks before. It seems the only role my GP's have is to give me my monthly prescription. I have had bloods taken by the GP's on 2 ocassions between Jan 11 and last month but that was only because I was not very well at the time. The first time they were checking if I was anaemic and last month because I was having a really tough time with the fatigue and getting pain relief under control, so he did a full check. Both times I was told there's nothing to worry about ...the results are good...To be honest I am having doubts as to whether to trust my GP's or not.
What do your GP's/consultants say? lts only recently I have found out that others seem to be getting more regular blood checks. I have not had the opportunity to ask my consultant yet and won't do until next June (2013) when I have my next appointment with him.
Hello.
I had the one point below normal range for the HB (red blood count) in May again as it was same in Feb's check too.
I was asked to wait a mth and then go in for a repeat of the full blood count as well as having the ferritin (iron), Vit B and folate checked as they'd not been checked for over a yr. I knew before I had these that it was the iron that would be the one that was showing a bit low (I was right, it's not badly under normal), the Vit B was within normal, the folate slightly higher BUT with the folate it's not considered alarming.
The one blood check that I am going to ask for next time I go will be the Vit D as not had a check of that since Oct 2011 now. Back then it was back to normal without any drugs as prior to diagnose in 2010 and up until the Oct 2011 check it was what was termed 'slightly low, but not bad' by the gastro. He explained that during the winter mths in England it is pretty much norm for a lot of people to show up slightly low in Vit D due to lack of sunshine. I did think the GP would put that down for a recheck at my last one but I thought about it a bit too late so will wait now until I go back. I was never a sun-lover prior to PBC diagnose but since, I have soaked the sun up out and about so can't see that at present being a problem for me.
I had the LFT missed in Sept when I went, couldn't believe the nurse at the surgery had missed those! There was me thinking I was being covered by saying to her that I also had the GGT one done on repeats (according to the gastro that is one that can be missed if having repeats at a GP surgery) so I had to return a mth later for what was missed. When I spoke over the phone to the GP after the Sept repeats and I mentioned to him I couldn't see liver and bone on mine he wasn't concerned about the bone but I persisted as with PBC as we all know, we can end up having trouble with our skeleton so that was done Oct with the missed ones.
Just a thought, when I was diagnosed with PBC and then went back to the GP you have to apparently have the repeat bloods noted by the GP so that when you contact the surgery for any repeats it is known what you are booking the appt for. They apparently note it in some patient diary so it is there. Perhaps your GP hasn't got these noted and if you are still under the hospital, they can adivse when you next need repeats. I know when I saw the gastro Feb 2011 after diagnose, he wanted me to return in 3mths to see him and I said I didn't want to so he said 6mths then and wrote one of the blood sample envelopes out for me to take to the GP surgery at the next 3mthly mark for the repeats before I returned to the hospital Oct 2011.
I have bloods done every two weeks but that it because I am on steroids and imuran. My consultant told me that the Urso is much slower to work and once they get the current inflammation under control and I come off the other meds they'll monitor bloods initially every 3 months but then it will become longer provided they are looking ok. I am looking forward to that!! But it may not be for quite a while.
I wouldn't worry too much if I were you guys. As Peridot says go with how you feel, if you feel bad in between you can always go to GP for bloods. Has everyone had the flu injection?
Hi I had blood tests done every 3 months along with a gastro appointment every 3 months when I was first on URSO. URSO takes up to a year to take full effect, but by 3 months they should be able to see an improvement if URSO is going to work for you.
Now LFTS are in normal range etc I have bloods and gastro appointment every 6 months.
If you are not happy with your treatment you need to say so. I was most unhappy with my GP when I was first diagnosed, i.e he insisted on trying to get me to talk about my drinking every time I went and told me to pull myself together. I then wrote to the practise and I asked if any of the GPs wanted to take a special interest in someone with PBC? I got two volunteers and my present GP is wonderful and makes having PBC a whole lot easier, she is also very knowledgeable after 4 years - bless her!
Many people have bloods tested 3 monthly but also many people are tested yearly, and some like me every 6-8 weeks when I see my specialist. The thing is there is no normal....
It's all about what your specialist feels is right for your condition. More and more people are diagnosed and are asymptomatic, and have little or no progression of the disease. Many people will get old with no progression of the disease.
I would say if you are worried ask your specialist about your condition and how its affecting you. This might help you understand why you only need yearly checkup...
keep well x
