Pbc & medication

[Lekkerbek]

So, a week ago I had extreme pain in my lower back, but couldn't point out an exact spot. Had to go to A&E and because the drs didn't know about Pbc, they googled it. They called a few other drs, but didn't know what to do. Took bloods and as expected my blood counts were high. They eventually gave me Ibuprofen, after I told them that the specialist said I can only take Panadol. Can tou please give me any advice on what to say to drs when I need help please? Oh and after following someone elses advice, I stopped taking magnesium tablets and the pain in my back stopped.

[Hidden]

Hello Lekkerbek.

Apparently we are not supposed to take NSAIDs (non-steroid anti-inflammatories) like Ibuprofen if we have PBC nor aspirin. Paracetamol and paracetamol containing tablets are apparently fine but a doctor specialising in the liver would hold more advice. I am only going off what I have read on reputable sites regarding PBC.

I do think that any medications are best avoided if possible but as we know it isn't always possible.

If a doctor is aware that we have PBC then for one any bloods done as routine (the LFTs are often part of routine in some cases) then the results aren't going to make him/her think there might be something going on when it is PBC-related and the LFTs in our case are expected to be higher than normal range. Also if you inform a doctor you have PBC and also state at the time you might be on some medications not prescribed for PBC use like paracetamol for eg it might be that the LFTs read a little higher than they would temporarily too. Certain meds can alter them.

I am surprised when you went to A&E (if you are in UK and using the NHS as I cannot speak for other countries) the doctor couldn't use the phone to contact a colleague who was in the hepatology field. I know where I am in Lancashire on reading the NHS services GPs even can contact a doctor at hospital for advice relating to certain health issues they are not overly familiar with.

It is said that majority of medications are 'well tolerated' in PBC providing we are not in a rather advanced stage with it.

Some on this site state they take the PBC Foundation leaflet along with them to certain appointments or it is always in their bag. You could use this. There is one that was produced specifically for GP use so it would probably better than the patient one they also produce. I did read in one of these leaflets about medications with PBC.

[Lekkerbek in reply to Hidden]

Great, I will get hold of these pamflets and have it with me, what a good idea. I am in New Zealand. Could I ask what I can use for constipation please? I take chia seeds in my food and have cooked food every day, fat free, sugar free, lactose free and gluten in my diet, but I am struggling. Thanks for your advice

[Hidden in reply to Lekkerbek]

Hello again Lekkerbek.

You might be able to print some info from site that cover PBC. Here in the UK besides the PBC Foundation we have Liver North also. (The can send you a copy of their free dvd, I'll pop the website on here. Know they have sent them out to other countries as others mentioned on this site prevously.) The British Liver Trust has their leaflets (one on PBC and also dietary with liver disorders) on their site to view, you could perhaps print info from that too.

I never had a problem prior to taking urso Dec 2010 but I started to feel a bit constipated after. I stepped up fibre in my diet but always had plenty anyway.

Not sure if good idea having fat free as we need some fat in the diet for the fat soluble vitamins to be absorbed, Vitamin D that we in the UK can have a deficiency with in PBC due to lack of sunshine where it is manufactured via our skin.

I just follow a normal diet myself. My son went through a bit of a health issue 5yrs ago and the hospital doctor reckoned after tests he had developed a temporary intolerance to wheat in particular. So I would use gluten-free flour for baking and over time he got back to normal. I can't say having PBC at the time made much of a difference at all for me consuming gluten-free.

I tend to start my morning with wholewheat biscuits (not our well-known branded version in the UK, a supermarket basic brand as I find it better) as that is good for adding fibre to the diet. I alternate between this and also porridge that I make in the pan with half milk, half water. Due to having PBC and the fact we can have bone issues, I just eat what I want and dairy products are a feature in my diet. I do like vegetarian cooking occasionally but find it a bit limiting as I am not a big cheese lover and that seems to feature in a lot of dishes. I tend to cook almost all my meals from scratch and I know what is in them.

livernorth.org.uk/

[Chrisprio]

Hi Lekkerbek,

Regarding constipation I initially tried fibogel, a natural source of fibre take with water, every morning. But it's a bit of a faff. I then changed to having milled flax seed with pumpkin and sesame seeds sprinkled on my breakfast (porridge or muesli) or it can go in soups, etc. I also have prunes and apricots.

If you are in the UK Aldi have really good prunes (Californian) and apricots and flax seeds which are good value too.

In general it seems to be helpful to eat anything with higher fiber and a low GI (glycemic index) e.g. lentils, beans, wholegrains, nuts and seeds...brown pasta, brown rice, brownbread.

If you want more people to advise on constipation you might want to make a new post to catch people's attention re this topic.

Wishing you well.

[JennyCville]

I have needed a lot of help with pain management, and they have me on nucynta, which isn't processed in the liver. I have chronic pain from other issues.

Best of luck...be well!

[jiacheetah]

I was told not to take any type of aspirin or ibuprofen. I had the flu and had to call the dr. to see what was what. I battles thru with just two doses of a cold med so I could sleep in the evening.

If you are in the right state in the US you could use medical marijuana although there are different studies and should have doctor (hematologist) approval. medicalmarijuanainc.com/cir...