The Lupus Forum banner

1 - 9 of 9 Posts

·
Registered
Joined
·
32 Posts
Discussion Starter #1
Hi friends

i'm feeling rotten just now and maybe you could give me some advice.
Recently dxd with "mild" lupus. Have had fibro dx for a few years, but problem at moment is to do with inflammation in my bile ducts. aia posted before that I had high liver function results which led to a scan then an MRI to find my liver was ok but I had something going on which widened some bile ducts. I had to go into hospital for a test called an ERCP where I had a tube down my throat and dye injected into the ducts. I was found to have an inflamed and swollen bile duct near my pancreas and was tested for cancer. Thankfully the biopsy proved negative and no cause was found. Had pancreatitis as result of the invasive nature of the test and had to have repeat blood tests. These were ok. I asked to be referred back to the rheumy as no-one had any idea what could have caused the inflammation. For past 3 weeks I have had symptoms of a flare with joint and muscle pain, fatigue, swelling, muscle weakness. Had further bloods this week and first results show liver function much worse than before. Second lot of blood test results due tomorrow. Problem is the rheumy decided last week that he didnt need to see me and dxd me on details of my recent symptoms and tests. I'm supposed to start Plaquenil but my doctor doesnt want to start it till she knows whats happening with my liver!! She told me today that she wants to put me back in hospital for the surgeon who found the inflammation in the bile duct to do further investigations to find a cause. Sorry for the long post but I feel I'm beating my head off a brick wall. I'm not sure what to do. Do I go for more investigations, possibly invasive, or is it possible that lupus could be causing the inflammation in the bile ducts. No gallstones were found. Maybe someone has had a similar experience? I'd be glad of some advice. Doctor phoning me tomorrow with remaining blood and urine results.
Luv,Mary x
 

·
Registered
Joined
·
6,152 Posts
Hi Mary

Im really sorry to hear about how poorly you are. The whole thing sounds so frustrating and worrying.

I can understand your GP's reluctance to just start you on medications though until a cause for your inflammation is established. While it is true that Lupus can cause inflammation in the bile duct it can also be caused by medications used to treat Lupus, e.g. steroids. The fact that cancer has been eliminated however does seem to narrow down the field and I presume you are not on steroids at the moment either? I did a bit of research for you and came up with this from the Lupus Foundation of America

Pancreatitis

Inflammation of the pancreas (pancreatitis) can be caused by lupus, but also can be caused by vasculitis (inflammation of the blood vessels) or by certain medications you may be taking for lupus, including corticosteroids, immunosuppressants, and diuretics. Because pancreatic vasculitis is treated with corticosteroids, while steroid-induced pancreatitis is treated by withdrawing the steroid medication, it is very important that your pancreatitis is diagnosed accurately, and that you are treated and closely monitored by a doctor with experience in this area.
http://www.lupus.org/webmodules/web...w_learnaffects.aspx?articleid=2321&zoneid=526

Even if Lupus is the cause and your doctor starts you on Plaquenil tomorrow, it really wont have any immediate impact on your bile duct inflammation. Plaquenil is not an anti inflammatory drug. It works very differently than steroids or other anti inflammatories and targets directly the ph balance of our cells. Over time it can help reduce the attacks on our cells but it wont immediately reduce any inflammation thats present.

I really dont know what to advise you Mary. If I were in your shoes I would have a good talk with my GP. If your bile duct is still showing signs of inflammation I would think that its important to address this either by trying out some steroid treatment or having those further investigations your GP is suggesting. Either way has its risks and/or benefits and if you both decide to try and hit the inflammation hard I would think you should have very regular liver tests to ensure that things are getting better and not getting worse.

Sorry I couldnt be of more help. Its a dilemma.

Let us know what happens and how you are
Luv n stuff
Joan:rose:
 

·
Registered
Joined
·
32 Posts
Discussion Starter #3
Thankyou Joan

I found the same info after posting. You are so kind to answer my query and you are right to suggest I talk with my GP. If we dont find the reason then we wont know what treatment is right.
Maybe the remaining test results will provide some answers. I'm not on any steroids, just take co codamol for pain.I'll post again after talking with doctor.
Luv, Mary x
 

·
Registered
Joined
·
6,152 Posts
Hi Mary

Just another bit of info for you which might be useful from this site

http://www.uklupus.co.uk/organ.html

How did you get on with your results?

Luv n stuff
Joan:rose:
 

·
Registered
Joined
·
4,444 Posts
Is that medication one that contains acetaminophen (Tylenol name brand in US)? If so, definitely discuss with your GP whether you should continue to take that medication as it can be very hard on the liver.

Good luck to you - may it all get sorted out and solved very soon for you...
 

·
Registered
Joined
·
32 Posts
Discussion Starter #6
Hi Everyone,
Thanks for the replies. I got the remainder of my results today and the liver function has gotten worse in two days. However they show problems in the biliary tract(ie a blockage so bile not flowing properly) and the actual liver function is ok. I discussed medications with doc and she says there are no signs that the liver has been affected by meds. So she is going to speak to the gastro specialist who did my last investigation to see where we go next. She feels I will have to go back into hospital for more tests on the bile ducts. I have just to rest over weekend but if symptoms get worse to call emergency doc. I hope the gastro doc will speak to the rheumy to check if the inflammation could be due to lupus. My last investigation in January showed no gallstones, no sludge... just inflammation and swelling. Then blood tests showed it was settling so they decided to leave well alone and not do any more invasive procedures. I dont feel so unwell today so I'll just wait to see how it goes. Thanks to you all for being here.
Luv,Mary x
 

·
Registered
Joined
·
6,152 Posts
Hi again Mary

Sorry to hear your test results are continuing to cause concern :worried: Something else that your doctor might consider is a condition called Sphincter of Oddi dysfunction which is a condition that causes blockage of the bile ducts although it usually presents with pain in the area and Im not sure if you are experiencing that?

I reckon at this stage you would be almost hoping that its being caused by Lupus as at least you would know how to start treating it :hugbetter:

I hope you have a safe weekend and dont end up in the ER. Keep us updated as to how you are and what your docs are saying.

Take good care in the meantime
Luv n stuff
Joan:rose:
 

·
Registered
Joined
·
6,152 Posts

·
Registered
Joined
·
467 Posts
hi mary

i don't want to alarm you but have they run a hepatitis C test?? i have it was diagnosed before lupus. but i think someone else had lupus and liver link for you to check. i would ask for the hep c test anyway.

just my two cents

feel better
hugs and kisses
 
1 - 9 of 9 Posts
Top