Lymph nodes

[flora]

I had my usual ultrasound scan last Monday, and usually the radiographer says ,can't see anything to worry about but this time she asked if I was to get bloods done or if I was seeing consultant ,I said no .anyway turns out that I have now to have ct scan as lymph nodes on my liver are enlarged what does this mean. I'm worried help !

[Shulsey]

Basically we all have some enlarging of lymph nodes with PBC. But when they become larger this usually is a sign of progression.

[Diane62]

My scan showed enlarge liver spleen and prominent lymph nodes. Was told it was nothing to worry out by my gastroenterologist. Diane

[Shulsey in reply to Diane62]

Diane62,

Do you see a heptologist? When My scans showed that my spleen, along with my liver & lymph nodes became incredibly enlarged my GI referred me to one. I feel that he is much more educated in our condition than that of my GI specialist. I feel like a bloated whale 🐳 sometimes due to the enlarging lol. I have to try to find some humor at times because if I didn't I'd drive myself crazy🤔🙄

[Diane62 in reply to Shulsey]

Don't see heptologist just GI. I get a lot of bloating too. Diane

[Shulsey in reply to Diane62]

May I ask what stage you're in

[flora]

I don't know what stage I'm at I only see a GI consultant that basically says urso waste of time taking it doesn't work ( his words) I asked about the new drug for pbc he said haven't heard of new drug and if he's not heard of it it must be a waste of time as well .He says nothing helps ,I used to see a liver specialist in Edinburgh but its so far to travel for a five min appointment. So now I don't take any urso .

[Hidden in reply to flora]

Flora, I think you should probably get yourself a new specialist. You need to be on something that will help slow PBC progression - to be honest, I find your Doctor's responses quite outrageous.

The new drug, Ocaliva, has been approved in the United Kingdom (from what I've read - I'm in Australia and it hasn't been approved here yet), so I see no reason why you shouldn't at least be prescribed it to see if it worked for you.

I'm in a number of PBC support groups and have read that for some PBCers a combination of both Ursofalk and Ocaliva are achieving the desired results i.e. lowering of enzyme levels.

Di

[Shulsey in reply to flora]

Im sorry to say this, but you really do need someone who knows a bit about PBC. This GI your seeing is obviously uneducated in our disease or he wouldn't be saying those things. Many people have lived long lives with this taking Urso, who never progress to the stage Im inc because of taking Urso. Plus, he says he had never heard of Ocaliva? To be honest, this truly concerns me for your health. I understand we do not know one another but I have been living with PBC since 2012 & have learned a lot on the topic. With the help of these lovely people on this site. Please, try to find a different GI, or even better a heptologist. The best move I've made is finding my heptologist. He's awesome with the knowledge of PBC.

[Shulsey in reply to Shulsey]

Im on Urso & the new drug Ocaliva.

[Beeverycareful in reply to flora]

Hi I can sympathise with you. I was diagnosed last year and am still not on on medication as they have said it's a waste of time too. I've been fighting to get treatment. I've got chronic fatigue which is so debilitating I've no quality of life. I've heard of the new drug i just hope you get on medication. I'm going to keep going until I get sorted as I just seen to be getting sicker. Good luck 🙏🏻

[bobbycat]

Thats useful to know. My consultant is fine when I can see him...appointment has been cancelled three times now. I do worry that my ultrasound shoukd have been done sometime ago so will see my GP. Hope you are feeling OK Di

[flora]

Thanks to everyone who answered I was diagnosed in 2011 and have read up on this and feel that I probably know more about pbc than my GI but I suspect that's the same as a lot of us with this complaint. The only thing this doctor has done ,and I'm very grateful for it after years of pleading he prescribed modafinil for the fatigue it has helped me immensely I could not function without it .

[Shulsey]

I've never heard of modafinil. I've been searching & pleading with both of my specialists about this fatigue that we deal with, it's insane. I'll be sure to ask my hep Dr about it.