Well it's bow half 4 in the morning and I have been woken up by my arms,legs,stomach and back itching like crazy.
At my last appointment at Birmingham I was told that he wanted me to go back on the rifambacin but as I was so overwhelmed and shattered from coming all the way from South Wales I had forgotten to ask how I am to go back on it. I have tried multiple times now to contact my consultant here in Wales and my one in Birmingham but after many left messages no one has got back to me.
Does anyone know how I am to go about this? As I'm weary of phoning my Dr's surgery as 2 of the Dr's there refused to believe I had been diagnosed so I had to get them to phone my consultant so they would give me my urso.
Hope everyone is doing well big hugs to you all xxx
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Lilbear89
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Hi Lilbear, so sorry to hear you've got the itch. I am on rifampin and it has really helped control it.
I also travel to B'ham from South Wales and wondered if you had the pbc nurse's number. If not, it might be worth asking for her next time you ring as she should have advice. Good luck xxx
(ps After months of reading posts for support and information this is my first post!)
Dear Lilbear, I had also these kind of problems and I took Colestiramine (commercial name QUESTRAN) 4 g/day... the maximum dose is 16 g/day for sever prurit...after a 4 months treatment (4 g/day) , I reduced the dose because the prurit began to spur. Now, I take 4 g every three days. Maybe you have to try this medicine but ONLY WITH YOUR DOCTOR ADVICE!!!!
Sorry to hear u had such a bad nite. Don't understand why your gp doesn't believe your dx why hasn't the hospital kept them upto date on your dx. The one thing I can say about Birmingham every time I have an appointment they always send letter to my gp.
When I went to Birmingham (I'm assuming you mean QEH), they gave me an online link to their database for all my results - and it was there the next day (I travelled from Devon). This was as well as the Prof (well. I guess his secretary) sending a full letter and details to my GP.
If you were not given the 'patient' link to your records (or cannot access it for some reason) and they didn't send a letter to you, I would look online for QEH, find the consultant's page, and from that - with a bit of searching - you can find his/her secretary and then 'phone' them, and tell them your problems with your GPs and records, and ask for a copy of all results and letters to be sent both to you, and your GPs.
I would also, then, go into your GP surgery, preferably at a time when you know it won't be too busy, and ask one of the receptionists to have a quick look in your records to see if there are any letters from QEH. [The receptionists in my practice can seem formidable and gruff, but I've found it is worth smiling, commiserating, joking and even chatting if they are not too busy - plus cards or chocs if they've gone that extra mile]. If there are, ask for a copy, you do have a right to a copy of all letters, sets of results etc.). If you can copy things at home, make 2 copies of everything, and send one, with a letter to your 'named' GP, pointing out the confirmation of your diagnosis, that they do have the results, that you have also got copies from QEH, and stress the need for medication. I would also make an appointment for a few days later - depending on how waiting lists work in your GP practice - and the post - and then go in with the 2nd copy of your details and demand the diagnosis be noted, and the medication be issued. Stay calm, be pleasant but don't give up, if necessary you may have to take it further.
This does sound awful, and should not be happening, so I do hope you get some results.
Hi Lilbear , you have my total sympathy with regards to itching , I'm lucky if I get 4hrs a night sleep , nothing works for me and I also don't respond to urso. But unlike you my GPS are very supportive and I think ive got the best consultant the world , I see him on a regular basis and can contact him very easily. I'm am lost for words with regards to yr treatment by yr GPS , why would anyone want to pretend to have PBC ??? Personally I would want a meeting with the practice manager to educate these GPS , it will be on yr medical records that you have been prescribed this med before and they will also have details of yr consultant and can sort this for you , I know I work in a pharmacy and deal with GPS all the time they just need a little push sometimes , they have a duty to look after yr health that's their job , also get some aqueous menthol gel 2% it helps to cool the body takes the edge off a little .
When I was first diagnosed I had the most unbearable itching and at night often I would sit in a cold bath, as that was the only thing that helped.
Then, like Paula, I was put on Questran, three packets a day, and that helped tremendously. Sometimes I can't manage three packets - you have to allow an hour after taking pills before you can take Questran, and then you have to allow four hours after taking Questran before you can take any other pills. But I always know when I've managed only two packets on one day, because the next day I itch a lot. When I saw Professor Neuberger in March this year he put me on 4 packets a day, but I had to give that up because it made me rush to the loo - OK when you are at home, but I'm out a lot and I really don't fancy looking for a suitable bush when I'm out walking with one of the groups I walk with!
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