fibro v pbc

hi all i have had pbc 8 yrs urso 1000mgfor last 3 was diagnosed fibro 2 yr back how am isupposed to know whats what in term of sympton last liver con was very rude and disagreed with me fatigue was coming. from fibro i gave up my job at christmas as i could nt manage anymore he sent letter to my gp virtually saying i was making it up

[butterflyEi]

Hi Hidden

not sure which country you are in but it would seem a second opinion may be in order. I was dismissed by a liver specialist four years after my diagnosis. Because of his attitude I went without specialist xare for about 5 years. When my itch needed more help than local GP could offer she told me "people like you should have a specialist".

I hope your GP can refer you elsewhere or a hepatologist local to you.

Best wishes

[Hidden]

I do feel for you, I had a similar experience with a host of symptoms some were even on the PBC leaflet I had, but my consultant refuses to agree that they are from my PBC.

The only symptom she would expect me to have is some minor itching ... guess what that's the only symptom I don't actually have.. after asking for another opinion she sent me to rheumatology they diagnosed fibro about 3 years ago...

However here Iam still suffering fatigue, bone pains (not the joints) dry mouth, dry eyes, difficulty swallowing, sweating, red blotchy skin all of which I believe are liver related but Again Iam told No.

So now onto a third opinion and a different rheumatologist to test for other autoimmune conditions.. consultant thought it may have been lupus... all clear no lupus or any other autoimmune issues... result ... I am then told they are neurological symptoms... when I asked if it was fibro related i was told " no you don't have fibro I don't like that dx. So I asked about Chronic fatigue syndrome no it's not that either, its a functional disorder all neurological.. real ... but neurological. No treatment except for amytriptaline to help with sleep..which I don't take. I still believe it's all related to the PBC so it will be interesting when I see the gastro for the follow up.

So the best thing I can advise is get a second opinion and change consultants... also join the PBC foundation and call them and speak to one of there advisors. I was given loads of good advice and sent some leaflets to give out to my consultant and GP. Let us know how you get on.

[Daisy1991 in reply to Hidden]

Your secondary symptoms sound like sjorgrens syndrome to me. My Rheumatologist says you can get secondary sjorgrens syndrome which apparently is common in people with PBC. He said only 70% of people show the antibodies for sjorgrens syndrome, they call it seronegative secondary sjorgrens syndrome when no antibodies are there.

[Hidden in reply to Daisy1991]

thanks for reply i was told 9yr back i had sjorgens they did the paper in eye test this was told to me by a rheumy consultant who diagnosed psorias arthritis but im not even sure i have that now or was it fibro thats been there all this time lol i am one right mixed up body xx

[Daisy1991 in reply to Hidden]

I know what you mean, same here. I have has so many symptoms over the years, I began to think everyone thought I was making it up, but believe me they were all real!!!!.

My Rheumatologist put me on hydroxychloroquine, oh my god what a difference it made, life back!!!!.

This was my turning point, that is my rhumy started to believe I was telling the truth, because my inflammation level went back to normal, first time in 4 years, he was blaming my weight for the raise.

He now takes me seriously when I tell him when things are going on, such a relief.

[Hidden in reply to Daisy1991]

oh im so pleased for u what a relief my liver drs are just not getting it the last one i seen told me i fat round middle and did nt do enuf exercise i told him i was awaiting cardiac tests coz i have a few irerg heart beats and passex out he just z well do at least 30mins a day after i had told him that we will await and see what next one has to say admittedly i am over weight at 5ft 1and 75kg but have been this weight barely altering for 20yrs im 62 now so perhaps the body is on payback time l gentle hugs to u x

[Daisy1991 in reply to Hidden]

Hi Pattie1955

I really don't think weight has alot to do with it all and after all you are not massively overweight. I am also 5ft 1.5 and weigh more than you at 87kg. I carry my weight on my butt and legs mostly.

When I first started with all my problems I was around your weight, the years of steroids and lack of exercise due to my symptoms took its toll on me and I gained loads.

My weight is gradually coming down now I am off them but it's a very slow process.

I walk in the peaks etc now my symptoms are pretty much under control, which helps. I don't think I would be able to do that if all of my problems were due to weight!!! To me I find if the medical professionals cannot find a cause for the problems they always blame weight. The rhumy who blamed my weight as the cause of my inflammation, could do with losing a few stone himself haha.

I hope you get sorted

Take care x

[Hidden in reply to Daisy1991]

thank u and well done on your walksmyjob was very physical so that was my fitness and i new that once i finished my fitness levels would go down but the job was impossible because of the fibro it was the first time in 24yrs my manager had complained so it was nt fair to them so another reason to quit i will see what next appts bring once again thank u for reply x

[Daisy1991 in reply to Hidden]

Your welcome good luck x

[Hidden in reply to Daisy1991]

Yes I was originally told that it was sjogrens but with testing saying negative that was also changed, its interesting to read this, I will be asking at my next appointment why this was not considered. Thank you we learn something everyday.

[Daisy1991 in reply to Hidden]

Good luck some rhumy's take some convincing mine did, in the beginning I sure he thought I was making it up., Things have now changed.

Mine has not put it down as a diagnosis for me but he has said I have all the symptoms. He said it can years to show the antibodies and sometimes they never show.

He says he prefers to do a wait and see approach, because he said it can impact on getting travel, life insurance etc with diagnosis. This is why he has left it undiagnosed. But he is treating with hydroxychloroquine, I feel normal again, I still flare but they are mild and short lived when they strike.

He has also said it could be the start of lupus aswell, this is why he is keeping an open mind.

[Hidden in reply to Daisy1991]

yes it doesimpact dramatically on insurances and mine was awaiting a blood test result as she was also thinking lupus and rheumatoid artritis both proved negative thankfully x

[jane1964 in reply to Hidden]

Hello Patti I am so sorry your liver doctor is like this.Fatigue is a major symptom and can be life changing it is for me.I also had a diagnosis of fibromyalgia which I was never convinced by,this has now been removed after 7 years and 3 referrals to rheumatologist it now looks like I may have some type of vasculitis.Don't give up eventually you may get dome answers.I found this article helped me feel less alone with the fatigue your hepatologist needs to read it

bmj.com/content/345/bmj.e7004

[Daisy1991 in reply to Hidden]

Hi Pattie1955

I have showed negitive in all my antibody tests, except I have antibodies for PBC but no disease as yet, hence why I joined this forum.

My rhumy randomly keep testing me for different ones. He says they can show at a later stage.

He knows I have some sort of inflammatory arthritis, along with other symptoms, but I am negative for rhumatoid arthritis.

This is why he keeps checking at intervals.

All he knows at the moment is that my immune system is attacking me and is treating me accordingly.

[Hidden]

oh my god that is a fantastic news report i shall print it off and go armed with that on my next appt thank u so much x