Liver involvement anyone?

[maisie5]

Hi everyone,

I was diagnosed with GCA in 2009. Relapsed 3 times since. Last couple of years have had autoimmune hearing loss and sinusitis problems plus regular throat infections. All appears well controlled by the excellent team at Addy's. However my ALT markers have steadily increased from 50 TO 106 over the last 3 months. (I have not changed my diet and I don't partake in the alcohol).

An ultrasound scan of my liver has shown a possible partly blocked artery. My consultant has arranged a more accurate scan called a dopler scan. After all that - my question is: has anyone out there had vasculitis of the liver? Question for Suzy - have you heard of liver vasculitis before and if so how common is it?

Thanks in advance.

[PMRpro]

I have no idea about a vasculitis of the liver - but I can tell you that raised alkaline phosphatase is very common in PMR and (I think) GCA and often in the early stages the doctors who don't know this look for liver/drink problems rather than an autoimmune one.

Once you have had GCA you remain at an increased risk of cardiovascular disease - atherosclerosis and other peripheral vascular disease problems included. Was your original diagnosis of GCA on the basis of "temporal arteritis" symptoms or did they also do a generalised PET/CT scan at any point to identify inflammation in other arteries? I would have expected Addenbrookes to be up to scratch with GCA and its sequalae but these days nothing surprises me!

[maisie5 in reply to PMRpro]

Hi PMRpro

Yes my original diagnosis was based on temporal arteritis in Norwich. No chance of the pet/ct scans at the Norfolk and Norwich - too costly. Yes Addenbrookes are more up to scratch - that's why I switched and travel all the miles. They as yet do not have a "label" for my latest symptoms but are carrying out further tests etc. in order to find an answer.

I know vasculitis can and does happen anywhere in the body, I am researching to find out if anyone has experienced or even heard of vasculitis of the liver.

Thanks a lot for your interest.

[Suzym2u Moderator Vasculitis UK]

John had a Dopler Scan just recently, I will ask.

Susan

[Suzym2u Moderator Vasculitis UK]

Yes, if the liver is involved in ANCA associated vasculitis, it is generally an indicator of active disease but the doctors would have to rule out other causes. I believe it is extremely rare.

If you are with Addenbrookes you should be looked after well.

Just to put things in perspective, we do know one lady who had been diagnosed with GCA and then after a few years was diagnosed with an ANCA associated vasculitis.

John had a Dopler scan to see if he had a thrombosis in his "good leg" , thankfully not, as he has already suffered a DVT in the other leg.

Susan

[maisie5]

Thanks Suzy, the more knowledge the better and yes I am in good care, if Addenbrookes don't know they will find out! I will keep you informed.

[Hidden]

Hi Maisie5,

I wonder if this is less Vasculitis of the Liver and more that any type of Vasculitis predisposes us to inflamed arteries and veins which can ultimately lead to thrombus formation and blockages.

It would certainly be less common to have a blocked hepatic artery or vein than in the leg or arm. At least Addenbrookes are reacting to your raised LFT's and looking for the cause. I hope they get to the bottom of things soon.

[Hidden]

In my personal take on this, nothing would surprise me if it's V and u happen to have hepatic vessels attacked. Rare? Hard to say, there is no data as to how many people were affected this way. ANCA, no ANCA ..different types of V seem much the same. Diseases seem to happen randomly, it's only medical textbooks where diseases appear orderly and neatly classified. In reality, as if diseases would ever care which vessels to attack. There are certain trends but as time progresses, I do think the current classification itself would be faced with questions, subject to shift in outdated thinking. I also wonder if this disease is progressive and refractory in some people.