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PBC Foundation
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Just saying hello

Just wanted to drop a line to let everyone know Im still kicking. My labs have been as close to normal range as they've ever been, thanks to the Ocaliva. Still having the monthly bloods ran. Im seeing a new rheumatologist at the end of the month to try to get the diagnosis of fibromyalgia in writing. Im being treated for it, just had to complete the numerous tests of what "it could" be. It seems that the only way to get the diagnosis is to rule out everything else it could possibly be & yes I've been the human pin cushion & test dummy for all of it. It's the only thing that could be causing such pain from head to toe. Happy that the Amitriptylin is helping. I take 100mg before bed. I pray all have been well, & I think of everyone often.

As always,

Stay Strong❣️

Shannon

Stage 4 pbc, F4 cirrhosis, grade 2 varicies, among other issues.

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Good to know that all is reasonably well with you. Sorry about all this stuff that you are going through. Hopefully they will get to the bottom of it.

Stay strong!

Hugs!!!

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Delighted to hear your labs are good with ocaliva good to hear from you again take care

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I was just thinking of you this morning. So glad you’re still kickin’!

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So good to hear from you! Happy Ocaliva is treating you well🦋

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Hi Shannon, it’s great to see you. How are your symptoms with your numbers leveling out

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I still have symptoms, Im guessing that's just part of where Im at in this PBC journey

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Hi Shannon good to hear from you. Glad things are reasonably good. Xx

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Good to hear from you! I'm happy to hear the Ocaliva is working. Sending all my good vibes and prayers.

Pam

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Hi Shannon,

Great to hear from you. Yay🙌🙌🙌Ocaliva is helping things. What a difference feeling a little better can make.❤

Here's hoping it continues girl!! Keep us posted.

Stella ❤

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Hi Shannon. How are you feeling? Do you have any side effects from the Ocaliva such as itching?

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I still suffer with the extreme fatigue & I've put on about 25lbs, which I was in need of. I itch still, mostly in the evenings & as usual, the itch is from my knees down & anywhere elastic applies pressure. I still have some breakthrough pain in my joints from time to time, depending on my activities, plus I still get the URQ pain. Still waiting on my disability claim to go through. Im waiting on my date for a hearing in front of a judge now. This takes forever in the States.

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Are you claiming disability based on the pbc induced fatigue? Was wondering how you got the process rolling. I understand it is very difficult to qualify for disability in US.

Hopefully everything will work out for you. Keep us posted.

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Im trying for the disability for a number of reasons due to PBC. I have written Dr restrictions for a weight limit of 10-25lbs, anything that will make me strain. The straining can cause my varicies to burst again. I've had some serious & unexpected issues due to having the varicies.

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I am sorry to hear that. I hope it all falls into place for you. Take good care of yourself. Hugs.

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Where in the states are you? I live in Virginia. What is URQ pain? I'm starting to have pain in different parts of my body. Wondering if it's the same. Dr's don't feel it's related to PBC but others say they have same pain. Good luck on the disability. How long have you been trying? I been thinking about trying to get it or I'm just retire. I'm 56

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I hope it all works out and things continue to improve

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It'll be one year in April that I first filed my disability claim. It is due to the symptoms of PBC that I filed my claim. I lost my career & the perfect job all within five years. I've had some trouble getting my PBC stabilized. So, all of the procedures I have to get every so often plus, Dr visits & unexpected hospital stays make keeping a job difficult. I also have a weight lifting limit my heptologist gave me due to the varicies. Anything that makes me strain could end up with bleeding varicies, which is very scary. Basically, the third time you appeal your case is when you get a date to get a hearing in front of a judge. My attorney claims that this step is always the longest. I could be waiting for 6-13 months just to get a date set. Too many people trying to get disability & only five judges in Vandaburgh county that handles these cases. The URQ pain is when the area around your liver is painful due to the swelling. My liver & spleen are both inlarged & my specialists tell me that they are very similar in size, that's crazy. Plus, PBC makes it difficult for your body to absorb certain vitamins making things like our vitaminD very low. This can cause pain everywhere in your body. Yes, I live in southern Indiana. I hope I answered some of your questions. But, I am not a Dr, so you should write these questions down & take them to your specialist. I hope I've help a bit.

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It took my dad a while to get the disability approved due to his heart condition, but eventually he did. The judge granted it & they paid him retroactively from the time he first applied.

I think it helped that his primary care doctor was thorough in fulling out the required forms.

So hang it there.

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Yeah, I was told that they could go all the way back to the date of my PBC diagnosis which was in 2012. Im really not banking on that though. But my attorney says they'll go back to my last day of employment which was April 27th of least year. I had to resign from my last job due to the weight limit. I worked with a amazing group of ladies who always knew how I was feeling just by looking at me. Yes, they knew all about the pbc & my supervisor always was good with working with the days I needed off for procedures, Dr appointments & whatnot. I travel three hours to Indianapolis to see my heptologist at Indiana university hospital. That trip alone puts me down for a few days once Im home. I cannot drive myself that far but it's still overwhelming just riding. There was a time that I had to make that trip twice in the same week. I am thankful for my healthcare team, they're awesome. But I don't see how I will manage to get hired or even if I were to get a job, I don't feel they would keep me on due to everything that goes with advanced disease that I have.

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Yes...it takes patience & eventually it will be okay.

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Thank you... Good luck to you

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I'm sorry to hear that but glad you put the weight on! Yay! The URQ pain is almost daily for me too but I think very common. Take care. Check in more often

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Ah

So pleased to read such an optimistic post

Sending love

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Good on You

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Hi Shulsey

Good to see you. Hope all continues well for you.

Best wishes

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Great to hear from you Shannon!

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I'm glad to hear that you are doing as well as can be. I am glad to here the Oclavia is working out well for you. That's so wonderful.

Take care and stay strong.

Stacy

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Thanks for the update. Glad to hear you’re maintaining forward momentum.

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Glad to hear from you! Hang in there.

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