I need a reminder...

[Ktltel]

Hi PBC family,

I Hope everyone is doing as well as can be expected. And for those of you experiencing the worst of this stupid disease, many prayers go out for you everyday ❤.

I know several of you have experienced upper right quadrant pain or URQP. Some have described it as a dull ache that may radiate to your back. Others have said that it's more of a nagging pain in that general area. And, some have said that sometimes even slight nausea can be associated with it too.

I've read all about this before but I can't find those posts again. I've experienced URQP before too, but it lasted just a couple of days and I chalked it up to eating badly. I could be wrong. ☹️

Since around Saturday afternoon I am again having this nagging pain/now a dull twinging ache. Ugh! I hate this. It sends me into worry mode. I've been doing pretty good. No real issues except super dry eyes and joint pain. I'm also back to eating right,(because I LOVE to cook and fall off the right track often ☹️) and trying to exercise when I'm not experiencing slight fatigue.

Anyway, today is day 3 with this aggravating pain. I'm due for my 6 month ultrasound next Monday along with labs. I'm anxious about both because my insurance refused to pay for my URSO FORTE (the real drug) which I was on for 2 months and my Alk-phos dropped about 10 points. Maybe this has nothing to do with it, I don't know. But I'm back on Generic Ursodiol now going on 6 weeks.

I'm having labs now every 3 months. Because of the ultrasound, they decided to run labs too. I haven't called my doctor about the pain/ache because they're closed until tomorrow. Plus I "can" function, it's just aggravating and a worry. Sooo, I guess I just need a reminder from you all who have or are currently experiencing this URQP, what could it be? And what have you done to help with the discomfort? It started out feeling like a gallbladder attack (I have no gallbladder) and right now it's a twinging, uncomfortable ache. I have a lot of house cleaning to do today, and I'm potting some flowers and veggies too. Right now though, not feeling like doing either. I'm gonna push myself 💪 lol.

Thanks for being there..... 😚

Those gorgeous horses (picture above) are on a farm a mile up my road. Had to snap a shot. ❤

Stella

[ninjagirlwebb]

Hi Stella,

Beautiful pic of the horses. Thought they were yours!

Sorry for your URQP. Try to rest & not push yourself too much.

I, sometimes get like a slight pain there. Thought it was a pulled muscle or something like that. I mentioned it to my hepatologist but he really doesn’t know. He thinks maybe it has to do with the fatty liver...

Hope you feel better & the doctor can help. Keep us posted.

Haley

[Ktltel in reply to ninjagirlwebb]

Thanks for responding. Ache is getting a little better but definitely still there. ☹️ Hope you're doing well.

Stella ❤

[ninjagirlwebb in reply to Ktltel]

Maybe apply a warm water bottle to it. I did that when I hurt my knee. It felt better with that.

Doing okay. We don’t have nice weather due to the tropical storm coming in from the Carribbean.

Went to a double taping for The Stephen Colbert show that broadcasted last Wednesday & Thursday. Guests: Jason Batement, Stephen King, Anne Hathaway, David Sedaris. Was fun.

Feel better!

[Ktltel in reply to ninjagirlwebb]

Wow! That sounds like fun. We watch that show!!

👍❤

[Ballymahon2 in reply to Ktltel]

Glad to hear from you again stella love the photo of the horses i havent experienced that pain i take ursofalk the one big side effect for me is constipation pbc is a strange liver disease and it seems to affect us all diffetently hope you get to the bottom of it and feel better its good that you are being well monitored take care anne☺

[Ktltel in reply to Ballymahon2]

Thank you. I'm glad you've not experienced this URQP.. Or RUQP lol, maybe I messed up those letters. Anyway, I hope you get your side effects figured out, poor thing. Hopefully your doctor will prescribe something to help you.

Stella ❤

[ninjagirlwebb]

I found these posts on the site for you about the pain.

Donna

4 months ago

I have this at least 2 to 3 times a week. I was told it is the organs surrounding the liver that actually hurt due to inflammation. I don't know where my blood work is currently but am going in next week to find out.

2 likesReply

tanjah

Hiddendonna01

4 months ago

The gallbladder is the organ closest to the liver. I don't have a gallbladder so that can't be causing my pain. The next organs are the stomach and pancreas. I was given a lengthy speech about how it is not my liver that hurts, but the sheath surrounding the liver that is inflamed and causes the pain. I wish all the specialists would get together and tell us all the same thing. I know when I eat the wrong things I have the whatever pain.

4 likesReply

[Ottley3]

Hi I agree - the twinges are so stressful. I find that I get them when I haven’t been drinking enough water or I’ve been eating too much sugar. They are not painful enough to slow me down but it is such a source of worry. My next doctors appointment is in about a month and I will ask some questions about this. Beautiful picture. Stay positive !

[Ktltel in reply to Ottley3]

Thank you for your reply. Tonight it's much better. Still there, but better. Watching what I eat again.... Wish I hadn't slacked off.

Thanks ❤

[butterflyEi]

Hi Stella

I see you have had some great replies and are feeling a bit better. I am sorry to read that your insurance company wont cover Urso Forte for you. It is much the same in the UK where the GP starts you on cheapest medication and if it works nothing else is suggested no matter the side effects. I hope by the time this reaches you you will be feeling even better and may have spoken to your doctor.

Stunning photo. I am taking my grandchildren for a taster riding lesson this afternoon. Should be fun.

Hope you are soon feeling better.

Best wishes

[Hidden]

I wonder has the change in diet, changed your bowel habits in any way. I only say this as I used to get URQP from time to time. A healthier diet and 4 smaller meals a day with lots of walking seemed to get my system moving so to speak and I no longer seem to get the pain.

[Jmorrison]

The pain or discomfort around the liver can be a symptom of pbc. It doesn't have to mean the condition is getting worse though! It is a very disconcerting feeling, as is the feeling like the 'baby kicking' in that area.

[Ktltel in reply to Jmorrison]

Yes, mine is more today like a constant ache in my back right side area. I can actually get in positions where is stops hurting too. But, I'm on the go today so it's letting me know it's there. Thank you for responding. ❤

Stella

[mrspeffer]

Hey girl...Bummer to hear you are experiencing URQP. It's one of the most worrisome pains I get. That being said, I only experience it when, guess what, I've fallen off the food wagon. Yep, high fat foods, sugar, anything that is inflammatory will stir up this pain for me. what i found is that since i've been using digestive enzymes with "complicated" meals, I have better luck at eating most of the foods on my list. But the 2 things that consistently save me are milk thistle(found a great organic one), plus Standard Process Brand Livaplex. Both are realitively inexpensive and work like a champ. In the mean time, maybe a day or two of veggie juices will help move things out. I was on vacation in Mexico and ate some foods I knew I should not have and the pain was terrible! Caused all sorts of problems...we are such delicate flowers.

Hope you feel better soon...nothing is worse than feeling bad and having to do life. Take care and please let us know how this all shakes out for you.

[Ktltel in reply to mrspeffer]

Thank you. Yep. I'm scared straight yet again. On my plant based smoothies again. Never really stopped those but, more like added those "complicated" meals in one too many times. ☹️

I've lost nearly 60 lbs over the last two years. Sadly, have gained some back. But... back on track!! ❤

Thank you again,

Stella

[donna01 in reply to Ktltel]

Stella- try a heating pad. It really helps. Oddly enough, I have had the right back pain myself all weekend too. The heat does alleviate it.

[mrspeffer in reply to Ktltel]

My pleasure. We have given up so much...food comforts us. Sometimes I feel I need a reward or think I'm normal and get off track. Good thing we can always start the day over

[Dotyy]

Hi Ktltel, I’ve been away a few days only just read your post. I just wanted to say, when I was first diagnosed years ago and I too had the upper right nagging horrible pain I mentioned it to a couple of different consultants I saw over the years. I was told it is due to inflammation in the liver. Although they say it’s not possible to have pain in the liver it is referred to the surrounding tissue and certainly is painful. I found drinking lots of water, movement, fast walking and some sort of excersise did improve or cure it temporarily. It is indeed disconcerting the type of pain, but I would say try not to over worry it’s not sinister. I found my addiction to strong coffee aggravated it. I thought that generic brands of medicines are supposed to be pretty much the same as the branded version,possibly cheaper versions of some ingredients. I wish you well and hope you find ways that help with the pain.

[Ktltel in reply to Dotyy]

Thank you so much. ❤

[ZEMR]

Hi Stella,

I have been experiencing the same pain for a couple of weeks now. Like you, it made me very worried as I never had it before. I started feeling miserable mostly emotionally as the pain was dull and not something I can’t tolerate, but the persistance of it is what drove me crazy. I was impatient to hear my ultrasound results, my blood work ones, and to see my doctor for my 6 month liver check up. I was almost sure my liver got worse. To my surprise, the doctor said all was normal and nothing got worse. He had no idea why I’m experiencing this pain. I left his office with no answer regarding this issue. A week later I had my Gynicologist appt, so I thought maybe she’ll have answers, but she had no clue. She said all felt and looked normal.

Exactly like you, I love to cook and plant my own veggies and herbs. I also thought maybe I should fix my diet some more and cut back on few indulgences I treat myself to from time to time. I did that, but I can’t say it helped with the pain, even though it is subsiding these days, luckily. The only thing my Gynicologist suggested is that URSO is probably causing some of the discomfort, and if the pain radiates from my right side to different places in my tummy, that it’s probably gas caused by URSO. I tried to follow that lead and made some pepper mint, chocolate mint, and spear mint tea. I planted them myself. I thought I wouldn’t loose anything to try. Sure enough the feelings of bloating and the dull pain subsided a lot. I still have it but much less.

I am worried too. I have no clue what’s going on. My doctor seems to take everything lightly, but I want answers. I am thinking to consult a second opinion maybe at a University Hospital. This stupid disease like you called it, has changed my life in a very strange way. Even though I feel fine for now, i can’t stop thinking about when things get worse. This in a way is ruining my present, which is not fair. My Gynicologist suggested I see a therapist to help me cope. I don’t know if I’ll do it yet.

I hope your dull pain goes away soon.

Do keep us posted please.

Z

[Ktltel in reply to ZEMR]

I understand everything you are experiencing too. Guess we all do to some extent. Thank you for your response. I hope my labs and ultrasound come back OK. I'm nervous about it still.

Stella ❤

[ZEMR in reply to Ktltel]

Good luck 🙏🏻

[Aussielouise]

I find it’s worse if I eat food with fat in it. Seems a lot of us have it and it’s quite normal for pbc. I find physical movement and even lying on my right side can make it worse. Long car trips etc I find neurontin/gabapentin is quite good for it. I notice it if I don’t remember to take it