My pain in right side has intensified lately.. Anyone have input as to why this might be happening?

[Bubie]

[Magnolia]

Where on your right side? Liver? Or down lower? I had pain in my right side when I had appendicitis, and when I had cyst on my ovary. The liver doesn't cause pain, but the sac it is enclosed in will, I've read.

[Bubie in reply to Magnolia]

I have researched and 20% of PBC patients have liver pain.. I am one of them. I also having the itching and dry eyes.. My gallbladder was removed in May and this pain is totally different than the pain from the gallbladder.. I have had two biopsies that both came back negative for cirrhosis..the pain in my liver had intensified lastly for some reason.

[Magnolia in reply to Bubie]

Was the gall bladder surgery recent? Did you recently have a biopsy? I've had pains in my liver area but they only lasts for seconds. I'm 20+ years with PBC, and don't know my stage for it was done 10 years ago and before I started Ursodiol. My last biopsy hurt me the day of and the day after.

[Bubie in reply to Magnolia]

Had gallbladder surgery in late May. Biopsy in April and again when gallbladder was removed.

[JennerLayne]

I had a biopsy several months ago which showed AIH/probable PBC overlap. My bloodwork shows no AIH and solely points to PBC due to high AMA and off the charts Igm/Igg. My biopsy showed some missing bile ducts. My LFTS have dropped four times over 6 months into the normal range (no Urso or Prednizone) due to going gluten free and limiting alcohol. ALP is in the high-normal range. I generally have pain in my liver after eating a large meal or when sleeping on my left side. I do try to eat 3-4 small meals daily, but really have no appetite and force myself to eat for nutrition. I'm blessed to have avoided 'the itch' thus far, yet have severe joint pain as well (xrays this week showed minimal joint/bone damage). I think it boils down to the fact this disease has no rhyme or reason and we're all vastly different. Good luck to you and I hope your pain subsides soon!

[littlemo in reply to JennerLayne]

HI Jenner did you find it difficult to go gluten free? I have read that gluten free diet can be beneficial for people with liver disease so for that reason and the fact that I am suffering a lot from constipation recently am considering going gluten free.

[JennerLayne in reply to littlemo]

Actually not at all and it is the easiet food plan I've ever followed, because I see and feel results. I previously had severe bloating (I looked pregnant), irritable bowel syndrome for several hours each morning, my stomach hurt constantly and my skin was a wreck. After several days, the symptoms began to subside and within a month, I was down about 12-15 lbs. Now, I am into my 6th month and have lost 40 lbs. I haven't really exercised and I still eat my daily dose of chocolate. My rosacea looks better (but could be that I cut out alcohol), and my LFTs are the lowest they have been in years. The hardest part is finding gluten free bread (I use Udi's --- I'm in the U.S.) and when I travel for my job, I don't have a lot of choices but carry crackers,GF snack bars and eat fruits, salads and simple proteins. I would definitely suggest giving it a try.

[littlemo in reply to JennerLayne]

Thanks for that will look for the GF stuff next time am doing the shopping and give it a go. I am delighted for you doing so well on it. Bfn.

[Lexi_Img in reply to JennerLayne]

I just recently became a vegan and not eating any dairy products. Also I am making sure it is organic. I hope it helps the bloating and helps heal my liver. Maybe it could help someone else too.

[snowqueen13 in reply to littlemo]

Hi Littlemo. Feeling so much better since we last wrote to each other. I have been on a gluten free diet for about a week now and it works! Hope you are well.

[Dmb1]

I found out bout 6 weeks ago that I hav Pbc so it's still fairly new to me. I've been told that my tests show that I may have something which can run alongside Pbc x if I do have it then the treatment for that is steroids. I also have a pain in my right side as well as the pain on the left x I also have to pee a lot x when I do I feel like I'm going to b sick. I seen u wrote that uv had ur gallbladder removed x I'm convinced my symptoms is to do with this. Had u any of these symptoms?

[Issipy]

I had terrible right hand side pain until I went gluten free- within a week it disappeared. You could try it for a few weeks...

[bobbyholly321]

Hi I also have PBC . As for the pain in your right side, I too have that pain constantly. I have said it to my consultant and he says that stress brings on the pain. Sometimes it gets so bad I cannot do anything for a few days. I find the only thing that helps is a strong pain killer and plenty of rest. I hate this condition, It really interferes with life! I hope you feel better soon. xxx Yvonne

[Bubie]

Thanks for the response.. I don't think stress is the problem., I go to the Heptologist next Monday maybe he can help with some ideas.. I do have a lot of the symptoms that come with PBC however two biopsies in the past fours months show no cirrhosis

[Lexi_Img]

I do not have pain in my right side however I do have a lot of bloating which has been with me for about 13yrs. I had been dx. In 2009 with the support of a liver biopsy of PBC. My Meld is 14 and I have a 265. I was told by my doctor that I did not have chirrosis yet. I have the awful itch, nausea, bloating and get tired very easy. Can anyone tell me if they start to speak to someone and forget what they are talking about? I am very concerned. I feel like it is a brain fog. I also have a blood clotting disorder which can also cause this. Happy to have this place where I can be

understood. I am on Urdosol 300 3x day.

[mumofthree in reply to Lexi_Img]

I can definitely relate to the bloating, tiredness and brain fog. I can forget what I am saying mid way through a sentence, so much so my confidence is slowly ebbing away. I get very stressed if I have to talk to strangers or attend meetings because I find it so embarrassing. I try not to engage in conversations with strangers and avoid eye contact with people when I have to attend meetings hoping no one will ask me a question or my opinion.

[Lexi_Img in reply to mumofthree]

mumofthree

I t is affecting my family that they made a doctors appointment and came along.

The brain fog may have cost me my job. I had to report to doctors in my job and would forget what I was saying. I felt like everyone noticed. I could not figure out what was happening to me. I would not admit it to anyone either this was in 2009. This year I admitted it to my doctor a hematologist for another disorder called Antiphosolipid syndrome which is a clotting disorder and also had pulmonary blood clots. He did say he noticed the brain fog and was waiting for me to tell him. I wish you well and hope the best for you. I hope you know that you are not alone in this craziness.

[uitlander]

Hi Lexi,

I found the brain fog relates to how tired I am - pacing oneself and following the advice that Colette (chairman ) gave in the penultimate Bear Facts helps.

I have found four causes for my own nausea

- fatigue,

- hungry so i carry fruit/a biscuit as it can come on quite suddenly,

- eating too much fat

- and the other which I had had long before I developed which was caffeine intolerance so I avoid coffee, never take any over the counter medication that has caffeine in(I was really really miserable once by taking a cold remedy with caffeine in).

At the Birmingham self management day Robert indicated that sunlight helps the itch - I have tried it out and it has really made a difference so lets hope we have some sunshine for me to expose all my limbs to today. There is a medication that apparently helps the itch but I am not on it as until recently the itch was just odd times and one could go off and have a good scratch.

Thats my experiences. Hope that helps. Take care

[gizocsi]

I think gluten free meals can help the pain, last days I was on a trip, where I had to eat lot's of bread, and evevrything was much worse, please try! And rest too. And as for fat: I use only coconut oil at home, and also feel the difference.

Best wishes!

[Lexi_Img]

Coconut oil does help the itching. Just use it like body lotion. The scent disappears. I purchased it at Trader Joes.

[snowqueen13]

I am new to this as I was only told 2 months ago I had PBC. I had the pain over my liver for some time now. The pain has been on and off but noticed it got worse when I ate a big meal. I went to see a homeopath last week who put me on a gluten free diet & no cow's milk products and to take vitamins & minerals to activate my liver. He explained that my ligament over my liver was inflammed which was also sometimes causing a sharp pain on my left side. After manipulating the ligament, the pain went immediately, although it was painful when he was massaging the area! The pain hasn't returned :o). Hope you feeling better too.