Varices

[Jaycee]

Hi I've not posted for a while so here goes, I have PBC, I don't have any symptoms, I don't take any meds for it as I couldn't take the Urso,I don't even see a Gastro anymore, only get get yearly blood tests so it has never bothered me, however, I have just had an endoscopy and it was discovered I have grade 1 and 2 Varices, also some ectopic gastric varices, now I am worried what this means, they are not any that are bleeding, what does this mean? I have also got other medical issues too many to mention, one in particular is Trigeminal Neuralgia for which I take Oxcarbazapine, it says not to take it if you have liver problems, I am very worried now, Any help or advice will be much appreciated. Thanks for reading.

[kimphoebe]

Hi there,

Firstly what handsome little dog. Surly you should be seeing a Hepatologist, I’m a nonreponder to uso and was put on a clinical trial because of that and showing positive results. Are they now going to refer you to one because there a a few meds being trialed at mo. Please don’t stress about it as there are loads they can do

[Sun65 in reply to kimphoebe]

Hi there, I was newly diagnosed a few months ago and when I got my first blood test my ALP went from 129 to 158. After being on URSO. The doctor switched the brand of medicine and now I am afraid to get blood work again. May I ask what your doing?

[kimphoebe in reply to Sun65]

It’s a drug called seladelpar, been on it for a year now, bloods completely normal at mo, but was still told in my last visit to hospital I have cirrhosis. Which came as bit of a shock but the drugs are helping to slow the progression down.

[Sun65 in reply to kimphoebe]

Thank you for the information. It sounds like your doing better. May I ask how long you think you may have had PBC.

[kimphoebe in reply to Sun65]

Dx in 2012 but they said prob had it longer than that.

[butterflyEi]

It seems that you need to return to the GP Jaycee . There are many medications with warnings not to take if you have liver problems but sometimes they are still prescribed as the benefit outweighs the risk however it is really only the GP who has your full history who can advise you. I am sorry that you have trigeminal neuralgia as I understand it is very painful.

There are now other medications being used by hepatologists for PBC which you may already know about. One of them seems to be antidepressants so if amongst your other medical issues you are prescribed an anti depressant it may be having a beneficial impact on the PBC blood test results. Although I have always responded to URSO there was a period of some 5 years when I did not see a consultant as I had been dismissed to the care of the surgery, when I started to have symptoms of the itch a retiring GP who I spoke to about my problems said "people like you should be under the care of a specialist".

It is good news that the varices are not bleeding, there is an article in the British Liver Trust under portal hypertension but the whole article can be a bit scary especially as you would be reading it with a worried mind so I have copied and pasted here the following which I hope will give you some heart.

"Detection of varices

Unless they bleed, varices do not produce any complications or symptoms. The only way they can be detected is by a process called endoscopy. During endoscopy a small flexible tube is put into the gullet and the endoscopist can see not only where the varices are present but also their size."

Please ask your GP for a referral back to a hepatologist and chat over your results with the GP (I hope you have a good one) it will help to ease your mind.

Please come back and let us know how you get on but in between hopefully someone with experience of varices will come along and share their personal experience.

Love the picture of your little doggy.

best wishes

[Jaycee in reply to butterflyEi]

Thanks so much for your reply, it's helped, She is called Daisy.

[Jaycee in reply to butterflyEi]

Hi There, I don;t know of any other meds for PBC, nothing has ever been discussed with me, I would like to see a Heptologist but don't know of any in my area, I will ask my GP. GP not particularly great , but will insist. She is called Daisy. Take care and Best Wishes Jen x

[cazer]

You should ask to be referred back to the consultant... Even though you cannot tolerate urso they should still be monitoring you... Especially with the varices.

I had varices... And they will need to keep am eye on you... Is that what you take the mycophenalate for??

As the liver gets more furred up the blood does not flow as well through it... And the veins in the stomach get a bit backed up... A bit like a partially blocked drain... They are treatable but not ideal as, as you already realise they can bleed...

Go and see your doctor and get sent back to consultant.

The pain may be completely unrelated to the meds... Is it top right of back??

You can get deferred liver pain in that area...

I'm sure they will get you treated but you should def be under liver unit... It is too complicated for gp to deal with...

Best wishes cazer.

[Aurush44]

Get professional advice, likely the physician that scoped you!

[gwillistexas in reply to Aurush44]

Agree!

[liver-bird]

I agree too

[P13jne]

Hi Jaycee, I’m glad you’re back, love your wee dog too.

Please go see your GP they have to push this further. I’m surprised you’re not on any medications as Urso can be great, but there are other different ones they can prescribe.

Take care. Jane xx

[Jaycee in reply to P13jne]

Hi Thanks so much for your reply, I will get back to my GP , but it can take more than a month to get an appointment here, very frustrating, but will push for one, Take Care and Best Wishes, Jen,xx

[mamma261]

Hello, I also have varices,I get regular endoscopies done. because of them I need my throught stretched so I can swollow better. I recently was told the varices are now in my stomach . diagnosed with PBC about 4 yrs ago, take urso and ocaliva not really helping my numbers at stage 3 liver decease .