Tuesday Tips

[DonnaBoll]

What advice did you get from your doctor when you were first diagnosed?

or... did you even get any?

[4pjx__]

As for me, I didn’t get any advice. That I already had a terminal liver disease so not to drink. The hepatologist said I was lucky. He’s had patients come that didn’t know they had it and came in nearly dead. That’s about it.

Pam

[DonnaBoll Administrator in reply to 4pjx__]

Thanks for sharing though. It seems like there was nothing said that didn't seem close to 'gloom and doom'. You are not alone in never getting advice. I had PBC for over 20 years before my transplant and never got a bit of advice or where to go to get accurate information - much less joining a support group. Educating our health care professionals, unfortunately, remains a huge challenge in the liver disease world of PBC. Did he tell you it was 'terminal' because there was no cure? The word 'terminal' sounds just awful to hear - I'm so sorry.

[4pjx__ in reply to DonnaBoll]

I guess that’s why he did. This was in 2017. It sounded pretty fatal to me. All things considered, I feel like I’m doing quite well. As far as I can tell, I don’t think I’m much worse and possibly even (at least) a small degree better than I was then. Although, when I ask , they don’t really say. Honestly, I don’t they even know. When I go in for my appointments they always ask what I’ve been doing. I answer I usually go to the gym, walk a few miles around the neighborhood or hiking on a nearby trail. They say they don’t worry too much unless I can’t get out of bed in the morning. This clinic is a liver transplant center so, that probably makes sense. I am nearly 70, so my chances of actually getting a transplant are slim. I probably have to be ok with that. I think I’m okay with that but also, while I do have cirrhosis, I am mostly fine

Pam

[DonnaBoll Administrator in reply to 4pjx__]

Thanks for writing what you did. Doctors don't have much to say when you go for appointments, do they?! When you get to be just 'status quo', then they don't need to do much, I guess. That might be a good thing. When we see our labs are good, we are satisfied. Glad you are being seen at a liver center though. They should be familiar treating PBC patients at all stages of the disease. We just need to go about out daily lives and live it the best we can every single day. How long have you had cirrhosis? how are your lab results?

[Ochredreams]

I just got told I have pre PBC as my ALP is normal and keep having to get blood tests every 6 months.I have itchy feet and scalp and terrible fatigue but was just told I could take medication but it would have side effects so I avoided them.

I wasn't told to avoid alcohol or be careful with things like taking certain meds like ibuprofen but only through my own research and joining the PBC foundation I've learned a lot!

I think we have to rely a lot on outside support as consultants and specialists are so busy and I can't blame them at all. ❤️

[DonnaBoll Administrator in reply to Ochredreams]

I went through the very same thing when they couldn't come up with a definitive diagnosis from my lab work. I had it repeated every 6 months for what seemed like years before a biopsy revealed PBC. Back in the 80's, when all this was happening, only way to really know if you had PBC was through a biopsy. Thank goodness those days are over. With fibroscans and MRI's it's much less invasive sometimes to find out. Belonging to the Foundation was such a good thing to do. I hope everyone belongs. They have so much on their website and keep adding new things all the times. Have they even mentioned starting you on Urso though? I will continue to have posts here from other members about how they find some relief from their itching and fatigue. Thanks for sharing. Let us know how the lab results are.

[Ochredreams in reply to DonnaBoll]

I'm glad you found the foundation just like me Donna ❤️I've had a MRI and ultrasound and a fibroscan which didn't work first time round so they said a biopsy may be needed to fully confirm. I don't mind I just want answers!

Let's see what happens as not going till July and need to get more blood tests done, which I'm not a fan off as I feel faint when I get jabbed too much with a little needle 🤣

[DonnaBoll Administrator in reply to Ochredreams]

It's a real pleasure to be part the Foundation. How was it that the MRI and Ultrasound 'didn't work"? Have you had an AMA blood test done. With elevated (right now they say 1 1/2 times the 'normal' range) liver enzymes and a + AMA, that should be sufficient for a PBC diagnosis. I'm really looking forward to travelling to Edinburgh next week to hear what's new for those with PBC.

I hope they only need to 'stick' you once for the blood.

[Ochredreams in reply to DonnaBoll]

Sorry for the confusion, the MRI worked and showed I had fat in my liver but the fibroscan didn't work and I was told it doesn't work on around 20% of people but I'll give it a go again 😁I've tested positive for AMA 5 times and my ALP is normal though it seems to be going up slightly each time.

I just feel like I'm getting attacked by vampires every time I get blood taken 🤣

Ooh Edinburgh is lovely, only been once and I really found it hard to find home made shortbread! I don't like haggis....my Scottish grandparents will be cursing me from their graves 🤣

I hope you have an amazing time and next time I hope to be there to see you all ❤️

[DonnaBoll Administrator in reply to Ochredreams]

It often takes years for some to have LFT's elevated enough for a diagnosis. In the meantime we wait. Really once you've had a AMA done, you shouldn't need to repeat it. Now the enzymes need to decide what they are doing. In the meantime, has your doctor suggested starting on Urso?

As far haggis, I felt I needed to try it "while in Scotland"... but nope. I did eat blood pudding several times much to my surprise. Looking forward to being in Edinburgh again next weekend. Do you live near Edinburgh?

[Ochredreams in reply to DonnaBoll]

The doctors never mentioned any medication but I was under the impression it was there to reduce the ALP but I'm not sure. I was on various meds for migraine and they gave me bad side effects so I'm always wary about new medication but if it helps I'll try it 😁I have a telephone appt in July so will ask then. I've yet to see anyone in person but happy to just get a diagnosis.

I live in sunny (I'm being sarcastic 🤣) Liverpool so it's a few hours on a train to get to Edinburgh! We do have shortbread here but our Irn Bru is not the same and tastes terrible! Get yourself a bottle whilst there, it's delicious! ❤️

I don't look forward to the sun, I get dark spots under my eyes and I look like I have bruises on my skin. Is this part of the condition I'm not sure. It's all new to me and having people like you here to support us is a big help ❤️

Thank you and thank you all who uses this forum! I don't feel so alone ❤️

[DonnaBoll Administrator in reply to Ochredreams]

As far as darkening pigmentation to your skin, PBC can definitely cause areas to darken. Being in the sun really made me have brown blotches on my face. Always made sure I wore a hat. If you don't already wear one and/or use sunscreen, that might help.

[DonnaBoll Administrator in reply to Ochredreams]

I know in the US some patients who suffer with fatigue have found some relief from taking Modafinil (Provigil). Also there is some trial evidence to support the theory that exercise of any kind can greatly help the fatigue as well. I know for those who are overwhelmed with fatigue, this seems crazy! but...any kind of movement on a consistent basis makes a difference.

Easy exercises to start with - if you aren't right now- would be even marching in place, chair yoga, or just walking any distance at all. Keep that positive attitude!! it makes all the difference.

[Ochredreams in reply to DonnaBoll]

I walky dog daily so I'm out and about walking and I love to clean so I donl that in short bursts when I can.I had sciatica a few years ago and had to stop doing aerobic exercise so I just stuck to my pilates but then I found it hard to lay on my back due to pain and now I'm breathless just walking up stairs and feel like I've aged 40 years.

It's sad but I've come to terms with not being as active as I was and I'm going to try to do more exercise at home. I used to walk 8-10 miles a day so I'm hoping to build up to 2 miles and see how I go 😁

Let's all keep posting and staying positive! Thanks for being here!

[DonnaBoll Administrator in reply to Ochredreams]

Thanks for sharing the 'good' and the 'bad' parts of your journey regarding doing exercises. Our abilities sure do change, dont' they?? I love, though, that even though you can't walk as you once did, you still do what you can. That is what is so very important. Just moving anyway we are able is beneficial in so many ways --- it helps the fatigue, increases our bone density and I firmly believe it helps us mentally just as much. Attitude is so important!!!

[Poppygayle]

I was diagnosed for PBC 14 years ago was told that I had a faulty gene and to go home and not worry about it that it was his job to look after me and not to go searching on the internet! But of course that’s the first thing I did and boy did I wish I hadn’t at the time especially with all the misinformation that was around I then stumbled onto the PBC foundation got the correct information and calmed down . I have been a good responder to Urso but developed over the years many autoimmune diseases that all all treated and controlled.

[DonnaBoll Administrator in reply to Poppygayle]

So glad that you did stumble onto the Foundation. They are so passionate about educating and informing health care professionals as well as every patient in over 70 countries that have PBC. So glad Urso is working for you! Yes, many other auto immune diseases sure seem to attach themselves to those with PBC. Osteroarthritis and Sicca Syndrome (Sjogrens) are the 2 most common ones. Are the doctors that treat your auto immune disease seem to work together in making decisions about your care? All too often, specialists don't want to order medications when a liver disease is involved.

[Poppygayle]

I do have osteoarthritis and sjogrens add to the list rheumatoid arthritis, Hypothyroidism , chronic anemia chronic kidney disease, diabetes type 2 ,i see a in for the PBC , GP for the Hypothyroidism diabetes , anemia and kidneys and a rheumatologist for the arthritis and sjogrens . All the consultants are aware of what’s going on and work together with treatment I need . On the whole I do ok I have learned to manage my symptoms well and going to the gym to keep moving is a must for me not easy but I definitely feel better for going .

[DonnaBoll Administrator in reply to Poppygayle]

What a great attitude! I have to convince myself to go to the Y for my water aerobics but so glad when I get there. We just have to take one day at a time, don't we? Glad all of your doctors work together. Unfortunately, that's not always the case.

[ninjagirlwebb]

My liver specialist said, don’t stress and let him do the worrying on my behalf. Eat a healthy diet, take urso & vitamin D as I was low. He then had me do a baseline bone density test.

He tracks it all and orders whatever tests I need to make sure everything is in order. Told me that he is only a phone call away if I have any questions or need anything.

I only call him if I need an immediate answer. If not, I just communicate with him via the patient portal. He usually gets back to me right away even when I send him messages on a weekend. Excellent doctor.

I see him quarterly and he runs all my bloodwork. He usually reviews and sends me a note the next day after my appointment. So I try not to worry too much about PBC because he is managing it for me. I am in the US.

[gwillistexas in reply to ninjagirlwebb]

Sounds like a great dr. I normally see my hep once a year and his NP at 6 months. I feel like that’s a big time lapse but I suppose he feels I’m doing well enough and no need for closer appointments. I am thankful for that but I would like a little more connection.

[DonnaBoll Administrator in reply to gwillistexas]

I know it may seem that way...a long time between appointments but I'm sure if the NP thought they hep doc needed to intervene, they would let him know. Hope labs are being done about every 3-6 months though. Your numbers good?

[gwillistexas in reply to DonnaBoll]

Yes, labs every 6 months by my hep. My ALP is a little higher than we like but holding kind of steady. No concerns from my hep.

[DonnaBoll Administrator in reply to gwillistexas]

all sounds really good....

[DonnaBoll Administrator in reply to ninjagirlwebb]

I think you are being well taken care of. Where do you live in the US? sorry if I've already asked this....

[ninjagirlwebb in reply to DonnaBoll]

New York City

[DonnaBoll Administrator in reply to ninjagirlwebb]

I had several members from NYC area in my other support group. Again, so glad you are being well cared for.