Newly diagnosed, and a bit complicated

[JennyCville]

Hi new friends. I've delayed in hooking back in with this community because I needed some time to adjust to the news and heal from surgery. I am a bit complicated - I have an immune deficiency, called CVID (Common Variable Immune Deficiency). I do weekly infusions of immune replacement therapy. The CVID leaves me vulnerable to cancers, severe infections, raging inflammation, digestive diseases...and, you guessed it, PBC. I've had a time of grieving the fact that I have two rare diseases. I also had a terrible recovery from the gallbladder surgery and liver biopsy, because I am a sucky healer (two collapsed lungs, hematoma on the liver, cellulitis, and a complete wound dehiscence.) My gastro put me on the Ursodiol right away. It's complicated because my gastro has never had a PBC patient with CVID, and my immunologist has never had a CVID patient with PBC. BUT....I am in the process of being accepted by NIH in Bethesda Maryland (the National Institute of Health) and will be in the largest cohort of patients with both rare diseases on the US. This is a huge answer to prayer and has given me lots of hope and comfort. I think i am ready to jump into this community and learn all I can to be healthy. The main issue I have now is profound fatigue. (I am still recovering from surgery, complications, infection, and newly diagnosed to PBC.) I

My question is this - is this fatigue/weakness part of the pbc journey? And what about weight loss? I am dropping weight pretty quickly and am already quite petite.

I am grateful this community exists...Hope you have a great Tuesday!

[chynablue]

Hi JennyCville and welcome! I look forward to reading more of your posts. Most people with PBC suffer from fatigue. Luckily, my fatigue has greatly improved since starting Urosdiol and Vitamin D. I am in the very early stages of PBC, so I consider myself very lucky. I'm glad you have joined us!

[JennyCville in reply to chynablue]

Thank you chynablue. I am glad your fatigue has improved. I am praying that I respond well to the urso. I am not as "early" stage as I had hoped (stage 2) but am praying I do well. The wild card is the immunodeficiency, which complicates everything. I had my gallbladder removed, along with liver biopsy, January 4th. At the time of diagnosis, my alk phos was 338, my ggt 165, alt 55, alt 75. Bilirubin is normal. I can't tell at times (and not sure it matters) if fatigue is from all of the complications post surgery or if it's the pbc. I will say that it is fatigue that I've never felt before....with my legs like jelly, and I find myself "budgeting" my energy.

[jiacheetah in reply to JennyCville]

Hi jennycville,

I am also in Stage 2 - totally shocked since I had no idea what PBC even was when they told me and I scoured the Internet and cried for days when I found out. I too have another autoimmune disease called Hashimoto's thyroidism. I had two parathyroidectemies and I thought that was a trip. Now, this.

But the Urso has helped my numbers. As of now I do get tired but not that often and slight itching all over my body on occasion but especially at night.

I freaked out when I heard I was Stage 2. My liver already has some damage. No drinking - not that I drank that much anyway - occasionally on weekends (I do miss my wine!), and a regular low fat low sodium diet.

Unlike others, I have not lost a pound and I have to watch what I do and not gain since the hypothyroidism makes losing weight difficult. Hubby and I joined a gym and we go three times a week.

The number of years you can stay in Stage 2 varies by how well you respond to the drug. I am hoping for the best and looking forward to having many more years to enjoy life. I find that although every once in awhile I cry to myself in my own pity party - I try to regroup and not waste too much time worrying about something I have no power to change.

Please let us know how you are doing.

Peace - out!

[JennyCville in reply to jiacheetah]

jiacheetah - thank you for weighing in! How long have you been at stage 2? Like you, I reeled and cried and researched for days. And then I stopped googling...because it isn't going to help! I am processing and trying hard to enjoy every day. I cannot wait until I have my appointment at NIH...because my regular docs are "scared" of me because they've never had a patient with both diseases. Best of luck...

[jiacheetah in reply to JennyCville]

I have no idea how long I have been in Stage 2. It totally sucks because my numbers starting going bad 4 years prior and the endocrinologist working on the hypo wasn't worried. After 4 years she still said nothing and I said "Look something is wrong! Who do I need to see?" She was an idiot and should have sent me to see someone in the early stages. So here I am at Stage 2 - probably been there for at least 4 years. With at least two autoimmune diseases and I even read on the Internet that two come together some time and she still did not catch on.

If I have learned anything it is you have to take care of yourself. Just because they have a few extra expensive initials after their name, doesn't mean they know what is going on with you. You have to run your own health course.

[DonnaBoll Administrator in reply to JennyCville]

I know being in Stage 2 may seem scary but many of us with PBC stay in the same stage - even Stage 4 - for many years. Just have your liver enzymes checked every 3-6 months. Get all of your information from reputable sources. This is so important. Please don't google - it's often inaccurate. As been already mentioned, please join The PBC Foundation. So glad to have you in the group. Never be afraid to ask any question.

[krazy-girl]

Hi, I am pretty new too. I also was just diagnosed with PBC in December of 2015. I also have severe fatigue. I can go for a few days, then I am down in bed for a day or too. But I do when I can and take care of myself when I can't. Try to pace yourself. I received the DVD from the pbc, foundation I would suggest you get this it's very informative. I just got it and I learned a lot. I don't know about weight loss. I know itching is quite common. I have that. It isn't everyday, but it happens. But I understand immensely about the fatigue. Best wishes to feel better soon.

[JennyCville]

Thank you, krazy-girl. How were you diagnosed? And how did you come to be suspicious of PBC? Are you on the ursodiol? I was diagnosed right after Christmas, and biopsy January 4th when I had my gallbladder removed.

[Hidden]

Hi, I have the fatigue of PBC that a lot of us on here suffer from, but I did just want to say that after having surgery a couple of years ago I did take rather longer than was expected to recover and the fatigue was bad for a while. So be kind to yourself for a while after what you have been through. It takes time.

I've never heard of CIVD so not able to really comment on it sounds awful, but surgery does take it out of you.

I don't experience any loss of weight rather the opposite but I think that's because I am not so active now but that's more my age. Take care.

[PCBnPBC in reply to Hidden]

Hi Candy12

FATIGUE

I am picking up on the fatigue taking a long time to resolve, I had TX Nov 14 (so 14 months ago) I am as fatigued now as I was since TX - I was hoping after 3, or 6 or 12 months I would regain stamina strength and wakeful periods.....I am now starting to accept my condition of severe fatigue is one I may have to accept long term.....(better than the alternative)

I am of course interested in hearing from others, especially if they managed to overcome fatigue where it took longer than 15 months!

Are you saying this was your experience?

Any others out there who gained strength after 1 or 2 years?

(looking for light at the end of my comfortable tunnel) Comfortable as I am not suffering too much, but would like to have more energy....tried exercising, (gently) this caused days of subsequent fatigue, I am in consultation with consultants, (Modafinil was mentioned as a possibility at last meeting) I am just interested in hearing from anyone who came out of fatigue a bit later then others!!

Charlie

[Hidden in reply to PCBnPBC]

Hi I can only relate to myself I suffer the fatigue all the time these days, my own experience was after surgery (not liver related) the fatigue was worse for a couple of months it seemed like any energy I had was taken up to heal the body from the surgery. It was not considered a major surgery either but it left me totally wiped out for a couple of months. Sorry I cant be more helpful take care.

[SimbaTutor in reply to PCBnPBC]

It took me awhile to pull out of the fatigue. I was just going into summer break (shift from full-time to part-time work over summer) when I was diagnosed. At first, I questioned whether I would be able to work full-time again, but I learned better management of myself. Per my most helpful doctor, the key is scheduling daily rest periods. Now, I work for 5 hours, rest for an hour, then continue working another 3-4 hours depending on the day. As long as I get my rest time in, I can function fairly well.

However, in December I experienced much more stress when my husband had medical difficulties that were multi-layered and went on and on for several weeks. This coincided with a reduction in my urso and the combination of the two really set me back in managing the fatigue. Two months later, I still do not have the energy I had in the fall even with regular rest. If I have learned anything, it is the tremendous factor stress is when handling this disease. I am hopeful that I will return to better energy levels and realistic that it may take several more months before I improve to where I want to be.

For me, rest, water intake, manage stress, and more fresh fruits and vegetables in the diet as well as learning to take better care of myself have been the keys to improvement. Best wishes that you find strategies that work for you.