Urso unavailable??

[WendyMarie]

I have been on Urso 18 months. Recently told by 2 pharmacies that Urso is on back order & will be at least a month before it is available. I find that very strange. Worse yet, is the fact that I called my gastro Dr. & asked if she could prescribe something else. She told me that there IS nothing else & I would have to wait until it becomes available again. What?? I asked her to prescribe Actigall, because the pharmacy said they have that, but instead a nurse called to tell me they located a 2 week supply of Urso at a different pharmacy. What I don't understand is how a gastro Dr. can tell me I need to wait. Should I find a new gastro Dr.?

[teddybear7]

My pharmacy has to order mine in as they don't stock it as its expensive. But As long as I give them notice it seems to be going OK. The chemist probably thinks its a gall stone problem hence the actigall suggestion. As for your gastro he probably thinks that as urso slows the degeneration PBC can cause down rather than a cure all, a few weeks wait won't really set you back too much. It's worth having a chat to him if your really worried. As for pharmacy's try another each one can order in from different places. I know it's a worry I'd be fuming if I couldn't get mine. X

[Hidden in reply to teddybear7]

Hello teddybear7.

I don't go with the fact that urso is said to be expensive. If you check online, can't remember the actual site now but they produce books on a regular update for GPs which give pricing for the drugs they administer on a script, if a generic available and also what has been added as a new drug and what has been withdrawn. I do expect they'll be able to receive this info via the web too.

I was having another look now but like the net it can be a case you can find something one day, can't another! I did find Ursogal by Galen and the cost of tablets, the white ones is net price 60-tab pack = £14.49. These are the 150mg ones. This is to the NHS. I was originally informed that my 90 days of urso was costing around £90 by one GP in my early days of PBC (I was diagnosed late 2010). I just said 'So what' at the time. I have always had to pay for a script and also over the years I had never frequented a GP until I started itching early 2010. I look at it another way, if I didn't take the urso now and did get worse and did end up having to keep visiting hospital as an in-patient for brief spells to keep in acheck any problems sooner with PBC if they were to occur then surely that would be costing the NHS even more money?

I know I had to argue recently with the GP about why I had to have 28 days as a month and not the 30 days that used to be so at my other surgery. I then went on to say that the pharmacist has to break the box up as they come boxed for 15 days. She relented and gave me 90 days. I also ladi it on thick that urso is the only thing I receive from a doctor and that if I got it free I'd not bother at all (though I was thinking at 28 days a time, surely that is more messing about for anyone to prescribe and also would they be known as a repeat prescription then, I thought the reason they came into being was so a GP could give a patient extended amounts if they are on them regularly).

I know for a fact that had I have been given urso in tje months before I was informed I had PBC then I would certainly have benefited in myself. The itching was getting rather bad as the months went on (as it took over 8mths from seeing a GP to diagnosis and receiving urso and in that time all I had were bloods at intervals, ultrasound, saw a gastro who took more blood and the AMA), I know the itching over time has subsided somewhat and it is more tolerable than it ws during 2010. I recall not even being able to stand for long when going out as my feet were all itchy all the time, these days I no longer have that. It is more confined to night.

[teddybear7 in reply to Hidden]

Hi Ive had key board problems sorry for not replying earlier. I think it's a case of we're a very small community and I suppose there's not too many of us on urso. as it is a bit more expensive than run of the mill drugs. They avoid the expense of stocking it. but it orders in ok overnight. I just have to remember that when the bottle gets low. I'm on the galen ones only side effect seems to be a bit of catarrh now & then and I have clear my tubes. but it's manageable.

[Hidden in reply to teddybear7]

Hello teddybear7.

I have to always return to the pharmacy for the Destolit that I receive. My rescription has always been generic and I originally started off with Urdox 300mg as the brand but that then became available as generic and though the tablets looked the same, the name was dropped off the packaging in 2012. Had no problems with those. Later last year the 300mgs were withdrawn and I had to be prescribed 150mg which again was generically written. I did receive loose tablets in pharmacy labelled bottles that I found out were by Galen but I had awful heartburn from them that persisted up to almost finishing the 84 day supply I received so asked pharmacy for the brand Destolit to try. Has no problems until April when usual pharmacy and othes I contacted said they would not supply Destolit as the prescription was generic and generic it had to be unless they chose to dispense a brand.

Explained to the GP who wrote prescription generically as I did state that when I got the brand with no problem later 2013 my heartburn vanished she wrote the brand one out for me and I've still been collecting that. I have no problems with this one.

The generics are cheaper to the NHS you see but I do not buy from any doctor or chemist the fact that urso is 'expensive'. At the end of the day if we all just chose not to take urso to see if we could improve our situation (as mine has since starting Dec 2010) then we would more than likely be in and out of hospital if we got bad with symptons of PBC and that would cost the NHS far more in the long run. I have to contribute towards the prescription so I really don't bother about this so-called cost. My argument is that one who is taking urso and attending for regular blood repeats that patient is known roughly how they are doing with having PBC and urso is deemed to take for life so it shouldn't be the case of cost.

[susanburgess]

I dont understand where do you live phone around to other chemist to get urso

[Hidden]

Hello WendyMarie.

Forgive me if you have posted previously where you are but I am in the UK (England) and I know the pharmacy I used to go to for the 300mg by Wockhardt up until July 2013 used to start having a supply in as I had been going there (Tesco) for 2yrs for them. After the 300mgs were withdrawn last summer I had to have 150mg tablets and double up on taking them obviously (I am on 600mgs per day).

I had to have my first batch - 84 days and not the usual 90 I used to get, this surgery insist a month is 28 days???! - ordered in as they only stocked the 250mgs. This was Boots local which is next to the GP surgery. (I found for the original 300mgs Boots local had to order in the 2nd time I wanted them back early 2011 so I switched pharmacies.) The following day when I had to trail back for the 150mg I received them in brown pharmacy labelled bottles, no info. I ended up asking for a copy of the patient info leaflet as I started to have side-effects. I discovered these 150mgs were generic and by Galen and the brand was known as Ursogal. My script was generic so it was acceptable to receive these.

When I went to another pharmacy - Sainsburys - with my next script I informed the pharmacist I ws still experiencing side-effects (bad heartburn) that I didn't have with my previous 300mgs and could I have a different one of which I found out there was Destolit by Norgene. He said there was no problem and I was getting those dispensed until April when another Sainsburys pharmacy at the same place informed me I could not have the Destolit anymore, I had to have a generic which was the Galen ones as the script was generic. I had to sort that out with GP for her to write the brand name on it after explaining that I do not want to go back to side-effects with the Galen ones.

Now what I would do meanwhile WendyMarie is contact by email or phone the pharmaceutical the tablets you have been taking and which you deem fine for you and they will inform you if there is a supply problem. GPs often do not know and from experience with ringing different pharamcies when Sainsburys refused the generic prescription April, I did get confliciting information from them. I know I would go back to the Wockhardt ones tomorrow that were originally branded Urdox 300mg if I could but I did contact the pharma direct earlier this yr and they insisted that they are not yet back in production. I even contacted the pharma who makes the Ursofalk knowing they do not do a 150mg or 300mg of urso to find out if they had any plans to produce another mg dose of urso (they don't).

[WendyMarie in reply to Hidden]

Thanks for your reply Peridot. I take 300 mg of Urso. My pharmacist called the drug company & they are on "back order," & they have no idea how long before they are available, probably 2 months. I did get another brand of Urso, but the fillers are different & the pills are larger than what I have been taking. I'm not understanding how a drug company suddenly doesn't have the meds available. I live in the US.

[Hidden in reply to WendyMarie]

Out of interest I thought later on after posting yesterday about the subject of the mgs of urso and seem to recall that in the last-but-one edition of the PBC Foundations Bear Facts Collette mentioned that urso was now available in 500mg tablet form. I specifically remember the article stating it would avoid patients taking a lot of tablets daily.

I know for me I'm not bothered, I am concerned about the actual brand I receive as I do know for sure that one, a generic 150mg does not agree with me.

[alpha3]

I've been on Ursofalk capsules for 12 months, 250mg 3 times daily as so far have no problems obtaining them from pharmacies

[Junolee]

I leave my prescription with my local boots and they always have in stock for me.

[Hidden in reply to Junolee]

Hello again Junolee.

I did have problems with Boots myself last yr so give up. The pharmacy that is next-door to the surgery I switched to 18mths ago now is Boots Local and they have fluffed up for me on the last 2 occasions. (I did used to go to Tesco as they always had a supply in as I was informed that if a patient goes regularly for something they would stock the next batch automatically. A change of mgs for me due to a withdrawal of 300mg last yr and I now just leave it with Boots Local and go back another day for them as they always have to order in even if you a regular.)

When my husband collected my urso beginning July he came home and I noticed that I was short by 30 days so he went back (it's not far away). He wasn't happy when the pharmacist then started questioning why I had 90 days supply instead of 28 day multiples as he was then informed that that is why the mix-up had occurred!!! To me it doesn't seem rocket science if the tablets I get come in 15 day packaged boxes that I receive 6 boxes (as I take 4 tablets per day) whereas previously before I mentioned this fact to the GP I had to have 5 boxes and one that had all the strips inside cut up to count out for 84 days! The mind boggles. My husband said to the pharmacist that we are expected to trust a pharmacy in sorting the prescriptions out electronically from the surgery as a compulsory thing in the near future if they cannot even make up a one tablet prescription now!