GP will not prescribe Urso

[highwood]

Has anyone on here had the same problem, my GP won't prescribe Urso, even though the Consultant has written to her asking her to prescibe it. She has sent him a letter saying no.

[Lisacj]

I suggest you make a complaint to the medical council. Firstly contact your consultant via his secratary and take it from there. This TOTALLY outragous. Perhaps call the PBC foundation person for advise.With holding medical treatment sounds illegal. Please let us know how you get on, good luck x

[highwood in reply to Lisacj]

Thank you for answering.I have phoned PBC foundation, they are going to e-mail me some info to take back to GP. Will be phoning Consultants secretary in the morning. My doctor is usually very hot and on the ball, she was not in today but seeing her Friday, she is not the one saying no, that is the doctor i am registered with.Was really upset and angry as last week they said letter not arrived, found out today they have had it since 28/5/13, so why not contact me then. Will let you know what happens. xx

[Hidden in reply to highwood]

Just an additional thought, perhaps the consultant could give you a prescription to start. I know when one visits the hospital as an out-patient in particular, you can be given a script there and then but have to take the hospital pharmacy.

In this event, given when I originally went to the hospital and the consultant asked me to return in 3mths time maybe you could possibly get a script that way as I know some on this site have their bloods done at the hospital (as I could have done but for me it is far easier at the GP surgery as nearer home).

Please let us all know how you get along. I know I was hoping I'd not got PBC in 2010 but after having the AMA test Oct 2010 I was thinking perhaps I had it I knew if so the outcome would be urso.

[highwood]

Thank you Judi will let you know the outcome. Grandson getting married in 4 weeks so nothing is going to bring me down, need to be well for the big day. Sue x

[Annflanagan]

good god, id be gone straight away from that doctor, its not like there is any other meds to treat pbc, some of theese doctors think there god, they can refuse vital meds for you, i would withut giving it a sceond thought report her, shes there to work for you and your well being,i hope you get this sorted soon, im stunned here

[Hidden in reply to Annflanagan]

Perhaps this GP in question thinks otherwise. I think with urso and PBC it can be a pretty questionable area but it is known it is the ONE drug only that is prescribed to try to fend off the progression of PBC as we all know.

So if someone has been informed they definitely have PBC it doesn't really questionable that patient is given urso.

I know there are no guarantees with taking urso but at the end of the day as we will all agree 100% here, it is definitely worth a try to see.

Then again, this GP might be thinking of the surgery budget but don't get me going there.....

[highwood in reply to Hidden]

You maybe right about budget, the doctor i saw for urso (different doc, not been there long and very young and stroppy) would not answer when i asked if was down to budget. She told me the consultant would have to give it to me. I asked her if any of the doctors in the practice knew about pbc, other than the one who had me tested, she was really upset by this and told me she knew allabout PBC, so i said well you know that urso is the only drug for me to take.I then left saying sorry i wasted your time.Was really upset but didn't mean to be rude. Will know more tomorrow. Sue x

[Hidden]

I can't understand that highwood as normally if you have been under or still are seeing a hospital doctor, a GP normally has to abide by what they prescribe, a sort of over-ruling.

I switched GP surgeries recently and yest was my first time seeing a GP as I had bloods recently and also being a new patient, she wanted to get a picture herself. I took my hospital consultant letter with me as it was agreed between he and I back in Oct 2011 I could be discharged (for the present) back to GP. In letter it stated I was on urso and also suggested blood test repeats (6 months). The original diagnosis of PBC Dec 2010 stated from the hospital consult to the GP I was to be prescribed urso and the dosage down to body weight. My GP complied and the new GP yest., she said that is how she will 'play' and in event in future she isn't sure of anything, will check but also if bloods start to get to what is considered another abnormal level for someone with PBC she'd suggest going back to hospital.

[JennerLayne]

Are you potentially in a situation where your bloodwork numbers have been changing and your GP just wants to monitor them before starting Urso? I've recently beed diagnosed, but my Gastroenterologist has purposely delayed starting treatment for three months. My bloodwork points to PBC, the biopsy pointed more to AIH but didn't rule out PBC (I have no bloodmarkers pointing to AIH). I've recently been on a GF diet and as I am losing weight, my numbers have been changing (SED rate down from 66 to 48 and LFTs have dropped in half!) His reasoning for the delay is to see what changes happen in my healthier eating and what symptoms, if any I have or develop He's unsure whether to treat me for the PBC and AIH or just begin Urso. The biopsy potentially shows early stage, so he wants to make sure I am on the RIGHT dosages and treatment and see if my numbers go back up once my weight plateaus.

Good luck and I sincerely hope you get the medication you need!

[highwood in reply to JennerLayne]

I was diagnosed on 21/5/13, the consultant said he wanted me on Urso asap.I spoke to his secretary this morning, she said " he may not be able to prescribe it for me as i am seeing him under choose and book, I see him at the Private Hospital, his nhs contract might mean he cannot prescribe, that is why he asked GP to prescribe". She is leaving my notes out tonight as he has a clinic, she will call me tomorrow. The GP who is refusing it has conveniently gone on holiday. Waiting for other GP who requested the testing to call me in the morning. will post when i know what is going on. Regards Sue

[Hidden in reply to JennerLayne]

I don't think this is the reason - the GP wanting to monitor blood LFTs (and others) - urso has been declined in highwood's case.

As I understand it, anyone who has been diagnosed with PBC and who has what are considered abnormal blood work is started on urso. I have heard that some PBC patients who have been diagnosed but have continually normal bloods are sometimes halted in having urso but it doesn't seem to be the case here as highwood has stated the hospital consultant wants her to have them.

Also to be noted, a GP can prescribe any medication normally altho' there is probably exceptions to the rule BUT if a consultant does state they want a patient to have a certain medication and in what dosage and frequency then usually a GP has to abide.

It does just appear to be a bit odd in highwood's case. I know when I went for my first ever hospital appt back in 2010, the consultant already had my prior blood results on the screen in front of him, the very ones the GP had done in the previous months.

[Pat_H]

Do you think the refusal is anything to do with the changes to the NHS with the introduction of Clinical Commissioning Groups - perhaps the doctors in your practice are saving money!? I hope your practice hasn't been taken over by Virgin. With the private sector taking over so much of the NHS can we expect more of this to happen?

Pat_H

[highwood in reply to Pat_H]

Funny enough the GP who had me tested for PBCis the chairman of our CCG. I am not sure if she knew the other one had refused., will know when she calls me tomorrow. Will keep you posted. Sue x

[Hidden in reply to Pat_H]

Hello Pat, not seen you on here in awhile unless I missed something! Hope you are doing fine.

I think a lot of it is down to money like everything today. I know for a fact that my prescription for urso just states 'ursodeoxycholic acid' and is dispensed in whatever available mgs for it. There only appears to be the one pharmacuetical company (Wockkhard) who do mine in 300mg tablets but I know there are others, Dr. Falk think one is that do in 150mgs if I was to take 4 per day as opposed to just 2 tablets.

My tablets used to state the brand of URDOX on the box when I first got but it was only later last yr when I felt like I did at the start of taking the urso, a bit of heartburn and checked the packaging to discover Urdox is no longer on the actual packaging. These tablets are the cheaper ones available via the NHS. Annoys me because I have to pay for the scripts.

Talking of which, having to pay I did originally push for more and managed to get 90 days supply. I did try to push for 120 days when I saw the GP a couple days ago but she refused. She was wrong in the fact that she is apparently supposed to only dish out scripts for 30 days as the reason repeat scripts were brought in was to save a GP having to keep having them printed out in such a short space of time and to keep non-emergency patients out of frequently visiting the practices. It does actually inform one being a patient on the NHS website about repeat scripts! BUT since April and when things have all changed in GP practices and they have more control, maybe now they are trying to keep that one a secret!? Given I have to now go for repeat bloods in 6mths as opposed to 3mths I was having, even if I was to be given a script for 180 days supply at a time the doctor would still have me going to surgery so wouldn't miss me having to go in and see he/she.

[Pat_H in reply to Hidden]

Hi Peridot

I'm still around and still itching. However, thought you might like to know something that happened to me today.

I called into Boots to pick up my Questran prescription and was told that the "manufacturers have put in a recall" both on Questran and on Questran light! Have you heard anything about this?

Pat_H

[Hidden in reply to Pat_H]

Hello Pat.

No I've not heard about Questran but I've managed not to get anything for the itch as yet....but you never know....

Given Questran is brand name for Cholestryamine wasn't it possible to have this issued under that name?

So what are you doing now, prescription on hold?

Anyone else out there who has heard anything about this? You'll have to post the question on here, know there are others using Questran.

[highwood]

Hello All, Urso update, Today I heard from consult's. secretary saying prescription is waiting to be collected from hospital. The doc who sent me for tests then phoned to say consultant was contracted to give me the first urso prescription, but she would do it for me. She is not happy with him so is taking it further. She did not want me upset and said she would have prescribed it for me, and no way would they refuse me having it. She actually went quite high to see if the consult. should have done it and he should. Anyway have now got it , so thank you all for your support. Sue xxx

[Hidden in reply to highwood]

Glad to read this although you might have to go out of your way to now pick up a script (?) that you could have easily have got from a GP.

Hope it starts to get you back on track now Sue. Keep us posted.

[highwood in reply to Hidden]

Think I will be able to get script from doctor after 1 month. It was a battle of wills i think between the GP i am registered with and consult. Dr who sent me for tests is willing to prescribe after month. Watch this space. Suex

[JennyM]

Did you know that as you have a serious liver disease, you are entitled to see a liver specialist at centre of excellence, instead or as well as local hospital consultant?, I am in suffolk, and under the care of addenbrooks, who do have brilliant communications with the doctors, and correct prescriptions etc, and they test for more things, also up to the minute research and treatments, Just tell your GP to refer you they cannot refuse x

[SC49]

hi Highwood,

I had a little snigger at your doctor's comment that she 'knew allabout PBC'. You will know from reading the questions and blogs on here that even the PBC experts wouldn't claim to know all about PBC.

On the positive side, the discussions that you have had with doctors over the past week will mean that they will be very careful to treat you and other PBC patients much better in the future.

I hope all goes well for you x

[Ellanvannin]

I was diagnosed 7 years ago and my Dr. will not give me urso. He feels that I react very badly to medication and if I can cope without it It will be better for me.