Awaiting Diagnosis

[Tallulah73]

Hi, I am a newbie here. I am currently having numerous tests for autoimmune disease. My consultant wrote to me saying possible connective tissue disease alongside possible PBC. My AMA antibodies were positive at 100 and positive ANA at 3200. Im am undergoing muscle biopsies this week and nerve conduction the following week. I'm also having issues with my salivary glands and under ENT. My vitamin d was only 14 so I've been given medication for that. Any advice or suggestions to translate all this would be greatly appreciated. Thank you.

[kingsnorth]

Hi Tallulah l was diagnosed with PBC in February this year l also have a positive ANA. I have lupus as well as sjogrens. Sjogrens and PBC usually go hand in hand. I have been prescribed eye drops for my dry eyes and usually suck a sugar free sweet for my dry mouth. God luck

[Tallulah73 in reply to kingsnorth]

Thank you. Do you have any muscle or joint pain with your conditions? It was pain and a swollen salivary gland that first took me to see my GP. Sorry to everyone for all the questions. I’m just nervous about the whole situation. I hadn’t considered anything like this. Many thanks.

[mjk98 in reply to Tallulah73]

I have terrible joint pain right now I'm doing a combo drug of 6mp prednisone for my autoimmune disease the 6mp is a drug usually given for cancer and autoimmune I go for my first blood test after doing the combo this week. My vitamin D has been as low as 9 I can't stand taking prednisone but it does help with the bones whenever I am on it my bones stop hurting

[PBCRobert Partner]

Hi,

It might be helpful for you to know what your liver biochemistry results are also. (Also known as Bloods, LFTs, Liver Tests, etc) Things such as Alk Phos, ALT, AST, GGT, bilirubin...

AMA is a marker. Approx 95% of people with PBC have +AMA. BUT... many people are out there with +AMA who do not develop PBC. This is why liver biochemistry is used to determine of there are any undue processes going on in the liver. Dependent on the type of ANA, there are a few possibilities so this is best discussed with your Hep.

We are here if you have any specific questions.

Yours,

Robert.

[shaza1966]

Hi Tallulah , i have had pbc for many years now first symptoms was the itch and fallen asleep for hours at a time. Then came the dry eyes and dry mouth not long after that came the sore joints ,and for the last year now the sore aching muscles with a constant burn pain . So after many months of suffering with all these conditions my doc thought i might be suffering fibromyalgia so started me on Gabapentin and i started of taken 1x3 300mg a day but didn't take 2wks and i was up to 3x3 a day and it is amazing Omg! The relief was fabulous and i have noticed if i miss a couple of doses a day the pain soon kicks back in , so that won't be happening again lol! I would say it takes 85% of the pain away and i can cope with that . Hope you get your results quickly and you to get some relief. Oh i forgot my energy levels dropped to suffer badly with lethargy . Take care shaza