Had enough now

I was diagnosed with PBC 7yrs ago, although I had had the symptoms for 8 yrs prior to diagnosis (I was told I had irritable bowel syndrome)! I have battled the itch for 6yrs now and I have finally had enough! I take urso, naltrexone, questran, rifampicin, antihistamines and clonazepam, I have lost my get-up-and-go and my sex drive because of all my different meds. My consultant told me I could try sertraline next for the itch but not even going to entertain him - I am going to see my GP tomorrow to demand a referral to the liver unit in Edinburgh - plasmapheresis is looking like it's going to be the only thing to help!

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  • Jill68,, your story seems so common, we are completely ignored, put down as mad neurotic, need i go on. I am so fed up with the treament we put up with, Demand to see a specialist and try hard to keep pushing. I see 5 consultants, NO ONE see's me as a whole person, I see rheumatologist, respiritory, ENT, gastrenterlogist and now immunolgoist. I have sjogrems, rheum arthristis, going deaf, bronchiectasis and phew PBC. My fatigue is chronic, nausea every day, pains so on so on.. WHY WHY WHY?? PLEASE PBC foundation HELP!!

  • I agree with you Lisacj. I get so mad and depressed about the way I'm treated I've got to the point where I don't say anything. Specialists, GPs, bosses, colleaques, friends and family all look at me the same way. I'm making things up and looking for sympathy. Been treated for separate conditions and not treated like a whole person and told I look so well. they want to be me for a while and find out everyday is a battle to get thru. Something must be done if I had diabetes or crohns or something people of heard of maybe it would be better. Please help PBC FOUNDATION.

  • I understand what u r saying, although im fairly lucky with family and friends, but because you just get on with it people forget and dont realise how much you struggle just get through each day. When u have a bad day and people look at you asking whats the matter you want to scream at them and shout i have an incurable little known about disease and i feel like crap!!!!

  • I have got to the point where I don't see any point in going to see anyone anymore, it seems like a waste of time, makes me feel like just curling up and staying there. Someone one said to me untill a celeb gets and admits to having it ( they won't as booze will get blamed ) it won't come to the forefront, like with MJ Fox ( bless him ) that it brought parkinsons more into the open ( if you get me )

    we do need help PBC Foundation, please.

  • I hear this common response over & over again on here, as well as my personal experience, No one, but a hepatologist can answer my questions & he said, "frankly, there is nothing any doctor can do for you, but prescribe Urso & hope/pray, that you are a responder." Hopefully, he said, it will help slow down the progression, & if it does, there is always the chance that it will stop working one day. I am looking for a gastro Dr. & very few of them treat PBC & they admit they know very little about it, only the basic knowledge. You would think, in this modern day of medicine, there would be more options to treat this disease, which makes me all the more fearful/worried, about my future.

  • Thanks for your comments folks, is shit isn't it! Anyway I saw my GP today who emailed my gastro consultant who has done a referral today to the liver unit - I have to start weaning myself off my naltrexone and stop the rifampicin. Start sertraline next week and wait for an appointment in Edinburgh. I am very emotional today as although I knew the time would come for the liver unit, I wasn't expecting it quite yet! I have read very positive things about plasmapheresis for intractable pruritus, so here's hoping.

  • Thanks for your comments folks, is shit isn't it! Anyway I saw my GP today who emailed my gastro consultant who has done a referral today to the liver unit - I have to start weaning myself off my naltrexone and stop the rifampicin. Start sertraline next week and wait for an appointment in Edinburgh. I am very emotional today as although I knew the time would come for the liver unit, I wasn't expecting it quite yet! I have read very positive things about plasmapheresis for intractable pruritus, so here's hoping.

  • I have M.E. Sjogrens, PBC and 99% certain I have Sorcoidosis. In the last couple of weeks I have had a bad UTI followed by an eye infection. Got second lot of anti biotics today for that. Tiredness is scary. To top it all I have a daughter with special needs who has recently been diagnosed as diabetic and when I rang nurse for her blood results she refused to give them me as my daughter is an adult. She told me that they are none of my business. If my daughter rang she would tell her!!! When I asked her what would be the point as she would not understand them she argued that she would. Is it any wonder we get so down? I thought I heard on Tele last week that Drs. were to take more care of carers.

  • Forgot to say that my appointment with the consultant for next month has been cancelled until September.

  • Hi, Sorry you are having a bad time at the moment. It is frustrating that there is nothing other than URSO that can help with PBC. Research is ongoing and continues. The problem with the itch is some things work for some people and not others. I don't have the itch except if I overdose on high fat foods, like chip shops, chinese or chocolate. All I can say is people are trying to help, its just difficult if no one has found the answer yet. Take care.

  • Count me in this totally pissed off with PBC group! Sick of having a health problem and being told "oh its the PBC" from a GP who knows nothing about it. Im sick of everything at the moment and if I get one more gym invite to "sort me out of being lazy" Im going to cry. I like what someone mentioned....until an A Lister celeb gets PBC we will all have to slum it and be ignored.My fatigue is currently so bad I can only stay awake for the longest 4/5 hours and when I am awake Im in so much joint pain I want to sleep again pfft. My itch has gone from a nuisance tickle to the feeling of a nettle rash with no let up. 20lbs gained so far and although I dont leave the house I have a sun tan to be proud of. I have natural dark hair,eyes and skin so I just get darker and people tell me how fantastic I look. If only on the inside eh.

    I get so upset and angry at PBC for robbing my younger child the life my older children was given when I was well. I took my big 3 all over the world and my youngest is stuck in with a mum and her crap disease at 40.

    sorry for the rant and hope tomorrow is more positive for us all x

  • Hi Jill

    Do you know if you will be admitted to hospital to get Plasmapheresis done or if you will be an outpatient? Sx

  • Waiting now for an appointment for plasmapheresis, apparently takes about four hours and done as an out patient. May or may not work, can only hope. I saw a professor at the hospital, what a very dour man, all doom and gloom, it was my partner who suggested I go back on naltrexone after plasmapheresis and he said yes I suppose that might work!

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