PBC Foundation
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PBC and painkillers

I am newly diagnosed by Kings with PBC, I don't know what stage I am, my ALP is 527, GGT 521, Fibroscan 14.9kpa. I am now taking URSO. I have Arthritis and joint pain in my hands, feet and knees. Prior to diagnosis I was taking Naprosyn every day. I have been advised I can never take Naprosyn again, I cannot tolerate codeine. I now have Paracetamol during the day which does not touch the pain. I can now barely move due to the severe pain. I have Tramadol which I take at night which does help a bit but makes me drowsy. Can anyone advise on a painkiller that would be safe for my liver and help with the joint pain please?

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Pmpaula,

You need to see Rheumatologist and find out what kind of arthritis you have. Osteo or rheumatoid or something else. Only medication specific to your diagnosis can help. I have PBC and Seronegative Rheumatoid arthritis. I am on URSO for the PBC and "Sulfasalazine" for the Arthritis. It has helped me with the pain so much. The good part is that the Sulfasalazine so far (4 1/2 months) has not harmed my liver further. Both Placquenil and Sulfasalazine help with joint pain but are somewhat less invasive on exacerbating our PBC. But please talk to a rheumatoid doctor first.

I was told last year that I am early stage PBC. Since then, I changed my diet to a liver friendly diet for PBC, and also an anti inflammatory diet for the arthritis. I've been cheating too much this last couple of months though... Now I'm experiencing some slight fatigue this last month. I'm going to try to get back on track with my diet.... It's not easy but I do feel a lot better when I eat right for my autoimmune diseases.

I hope this helps some,

Stella❤

DX PBC 10/16

DX RA 4/17

DX Tendinitis 7/17

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Stella

What foods are and aren't in your liver friendly anti inflammatory diet?

Jlruggie

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Jlruggie,

I try "not" to eat dairy, gluten, fat, simple carbs or added sugar. Also for me... No tomatoes or added salt.

I also had a food allergy test done by a naturopath and I have a list of foods that I should "not" eat (for me) as these would cause inflammation because I'm allergic to them.

I have a Vega One (vanilla) plant based protein powder smoothie every morning with ...

1.) 1/2cup organic beetroot juice (good for the liver)

2.). 1/2cup pure coconut water (my preference as I need potassium)

3.) 2 1/2 cups organic baby spinach (good for the liver)

4.) 1/2cup sugar free pumpkin filling (my preference good for potassium)

5.) 4 or 5 whole strawberries or 1/2cup blueberries or 1/2cup raspberries (good for liver)

I put these into my Nutri Bullit and make it into a smoothie. There is "natural" sugar in this. I usually add 1/2cup of water too as it's thick.

I'll have this smoothie once or twice a day.

Lunch and dinner always includes a huge salad with cucumbers, all kinds of greens, a few slivered almonds, celery and a vinegarette dressing. (I always have this ready made in a huge covered container in my fridge) A lean 3 1/2 oz. piece of meat... Chicken, Turkey (no skin) or very lean beef. I eat around 6-7 ounces of protein a day.

I try to drink 64 ounces of water a day.

This was my diet for 8 months after I was diagnosed with PBC last October. I lost weight and felt so much better.

Meds: I take URSO, Sulfasalazine for RA, LDN-low dose naltrexone for all these AI's, and supplements from my naturopath for my liver as well as vit B12, vit D, folate and a digestive enzyme.

*This past July my baby sister came to visit and I totally got off track. I love to cook and eat!! Until now I'm struggling to get totally back on my regimen above, I've gained some weight back 😕. But that's my goal, to get totally back on track because I felt so much better.

At the beginning of a this year I had a liver biopsy and it showed my bile ducts were "unremarkable " and that I have mild fatty liver. So, they said I am early stage PBC.

In November I will be having my one year CT scan. My LFT's have remained in normal range "except" my alk phos and my AMA. These remain elevated. 4 months ago my AMA was 47. This past Friday my labs showed my alk phos was 157, "up" from 142 a couple weeks ago.

Hope this helps

Stella

DX PBC 10/16

DX RA 4/17

DX Tendinitis 7/17

I have wrist aches from tendinitis and muscle aches at night as well as horrible night sweats... I seem to run hot. I've heard others have this complaint too. It's different from menopause symptoms.. Although I am 58 yrs old. My RA meds help a lot with my joint pain.

Since I've been off my good diet recently, I have noticed the night sweats and muscle aches have increased. Diet definitely has an impact on my symptoms. ❤

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i have noticed diet mames my sweats worse mainly sugar

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My daily diet plan

I eat broccoli, kale, avocado, Brussels sprouts, strawberries and cabbage one cup each everyday.

I take turmeric tablets with pinch of black pepper and round spoon of coconut oil twice Day..

beans or legumes and lean meats twice a day as well

Salmon and quinoa 3 times in a week..

Decaf one to two cup per day

I eat lots of nuts like peanuts, walnut, pine nuts, cashew, pistachio and sunflower seed, pumpkin seeds.

2 eggs , 1 slice beacon, soya milk and one Clive wheat bread with peanut butter as well!

All my meal portions are not bigger then 4 ounces and I try to eat every 4 hours..

sugar is one of the main cause for inflammation, that's why I have cut down to 80% from my diet. 20% sugar I get it from my beer 😂

I take probiotics twice a day as well.

Beside these things occasionally I eat everything!!!

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Sachin 1234,

From my aurvedic doctor and from reading to try 2 weeks of:

yes to broccoli, kale, brussels sprouts, strawberries, cabbage, quinoa, rice, spinach all vegetables, coffee

No to anything processed, dairy, meats, eggs, sugar, nuts, turmeric, pepper, coconut oil, butter, all fats

get blood tested

Gradually add avocado, coconut oil, beans, eggs, lean meats, seeds, bits of sugar, organic breads

jlruggie

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Why? are allergic to turmeric?

You can't eat Meat either 😔 it helps to replace damage cells in liver

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Sachin,

aurvedic doc said tumeric builds up bile and to be careful with it. I've read tumeric and black pepper are supposed to reduce inflammation. Aurvedic doc said that's for normals.

Meat inflames the biliary system he said. Pbc liver works too hard to process fats.

I know I know, what are we supposed to eat for gods sake. I just had an organic chocolate bar to get my mind off it while I look for jobs...

jlruggie

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I'm confused, do you have real dr or you just have auervedic dr. auervedic treatment is not enough for pbc in my opinion..I grew up with aurvedic medicine back home now I live in USA tho I still use lots herbal medicines but in causation..

I have no dietary restriction from my doc so far. my diet plan is from my nutritionist which she made me liver friendly!!

I did read turmeric is bad for gal bladder and bile duct but I could not authenticate the author or specific fact..for me so far it is doing ok, I guess and I will enquire more about turmeric!

About meat please counsel with your real dr. Not auervedic..

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Sachin1234,

Thanks. I have a hepatologist with a PA who specializes in PBC. She hasn't given dietary recs beyond lots of vegetables and no alcohol.

jlruggie

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Vegetable is very good for energy no deny...little bit of good fat and little bit of meat is good for liver regeneration.. couple years ago cirrhosis patient were restricted from eating meat but after intensive long research they found out meat base protein is better for liver cirrhosis patients ..I'm not trying to convince you to eat meat😁 what I'm trying here is to spread the information that I know from my dr., fellow pbcer and web site....

In dairy product, mostly I eat yogurt and mozeralla cheese!

I have reactive hypoglycemia too which is a another side effect of pbc so can't eat lots of simple carb and sugar and I have to rely on protein like meat, legumes and whole wheat 😔🙏

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Sachin,

Ooo good info and makes sense. Sounds like a good source too! And doctor with PBC? Cool! Now we gotta find a hepetologist with pbc and see what they are doing!

: )

Happy to exchange notes with you Sachin!

Jlruggie

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I'm very fortunate to find my liver specialist..dr Louise marsano, he is the head of university of Louisville GI and hepa department..he is full of knowledges and explains everything in a very simple way and very supportive as well.. I used to see him every three months now I see him every 6 months.

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Sachin

Does your doctor have pbc?

Jlruggie

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Nope !

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i was asked to go on sulfazseline in 2010and it was approved by the liver docs i did some investigations into it and got scared off by side effects but to be honest im scared of every med but on my track of looking into it found it contains sulphur and im allergic to that so that was it x

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Pattie1955,

Didn't they suggest anything else besides sulfasalazine that might help you?

Stella ❤

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i can t have anything coz of the pbc liver drs refuse im struggling with the fibro pains but again they z no

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Hi Pattie, I also have fibro & see a neurologist for this. She diagnosed me & knows of PBC as well. I take 50mg of amitriptyline a couple hours before bed & this has been a huge help. My GI & heptologist know of all my medications & work together in regards to my being stage 4 PBC. If I were you I would mention this to your specialists. Before the amitriptylin I couldn't move without pain. The cool air even hurt, nor could I receive hugs from my children without it being painful.

Stay strong❣️

Shannon

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thank u yes i know what u mean about the air hurting thank u for advice i will mention again to drs gentle hugs to u xx

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Hi ktltel,

What diet are you on, do you have a link to anything so I can try plz.

Thanks

Sylvia

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Sylvia,

Please see my response to Jlruggie above. I hope this answers any questions you may have. Feel free to message me if you have other questions.

Stella ❤

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Great advice from Ktltel there, so do follow her example.

I would also ask to have your vitamin and mineral levels checked, as PBC can cause long-term depletion of Vitamin D, and then calcium can drop as we need the vit D to absorb it. This may be exacerbating any joint conditions.

Also, have they checked you - really thoroughly - for all other autoimmune and related conditions? People with one autoimmune illness often have others. And ... did they check for all other liver conditions? I was checked for everything under the sun by my lovely GP.

But it is good that you finally know what is going on, and you can start to manage the PBC. Meanwhile, have fun, relax and treat yourself (within the bounds of a sensible PBC diet, that is!) as one of the best treatments for all autoimmune conditions is to live well, enjoy yourself and de-stress as much as possible.

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Thank you to Ktltel and GrittyReads for their help and advice. My initial diagnosis also included Sarcoid in addition to the PBC. I was not given very much information about either condition. I am having a scan this month to look for signs of portal hypertension. I am then back at Kings in October. My GP has not been helpful, I saw him regarding the pain in my joints and what painkillers I could now safely take, I also asked him about the possibility of having other autoimmune conditions, he said all this is beyond his knowledge and the best thing to do is to wait until October and ask the Doctors at Kings for their advice.

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I take naproxen, & have no trouble my GP prescribes & my specialist doesn't have a problem with it. I suppose it depends how your body / numbers are. X

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hi i have pbc multiple joint with osteo and they were quering rha but now they have decided its fibromyalgia u need to see a rheumy cons and also check out the fibromyalgia symptons then if u think u have many similar symptons u might have to suggest to gp/con for them to confirm its not picked up on bloods or xray i just thought mine was my arthr playing up good luck x

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