Pbc symptoms or something else??

[Han73]

Hi everyone

I was diagnosed with pbc about ten years ago and I was taken off urso about twelve months ago because it gave me terrible stomach problems, much better now I'm off it.

My health is generally good, I'm 47 years old and despite having pbc I'm an adult british gymnastics champion so don't ever think pbc will stop you from reaching your sporting potential!

Since being diagnosed I've had strange symptoms that come and go and wondered if anyone else had the same things, these are:-

Brain fog

Extreme tiredness resulting in urgent need to sleep

Loss of taste

Lack of concentration

Shallow breathinng

Dizziness

I call these episodes my 'yuk' days because I find it so hard to explain to my family how I'm feeling, they don't last long and usually pass but never the less leave me feeling terrible.

I think I may have found one of the contributing factors to these days and that's when I leave it to long to eat and I think my liver goes into melt down.

Does any of this sound familiar to anyone?

Look forward to hearing your stories

Cheers

Hannah

[Skypony]

Hi HannahWow that’s inspirational!

Do you think you might be pushing yourself a bit hard though? It’s important to listen to what your body is telling you.

Certainly fatigue is a very common feature of PBC, and my most prevalent symptom. People often mention brain fog too. The other symptoms I’m not so sure - have you consulted a doctor about them? It’s easy to put lots of things down to PBC and miss something else that needs treating, so you’re wise not to.

Also may I ask if you were tried on any other PBC medication after you came off Urso? Other people in your situation have found alternatives that suit them better, and persevering with this could be important.

Best wishes.

[Han73 in reply to Skypony]

Thanks for your message! No I’ve not been offered an alternative to urso but might look into this now, worth a try anyway!

[Cstar1079]

I get all those symptoms often. However I’m not sure about the eating for mine. I will pay more attention now though. I wouldn’t take any chances and assume. I would check with your PCP and get some blood work done, could be many other things also. Could just be low sugar too. If you’re going too long without eating and have any caffeine that can cause a drop in sugar quickly which sounds more like your symptoms. A simple glucose test will give you the answer to that. If it isn’t that maybe it’s coming off the Urso.. not a DR. So I can’t be sure but I would definitely check in and get some labs done. Good luck

[Han73 in reply to Cstar1079]

Thank you so much

[vicary]

Hi Hannah , Extreme fatigue is a huge part of PBC for many , I was diagnosed 10 yrs ago too (had a transplant Nov 2019 ) I couldn't get through the day without falling asleep to the point pre transplant I fell asleep many times whilst eating my tea ! In fact if I sat for any reason I would fall asleep . They only times I had dizzy spells , breathlessness of any kind turned out to be due to low iron ( which I still have problems with now ) it turns out my body struggles to absorb & maintain it so investigations are on going at present , low iron means less red blood cells that carry oxygen around the body , so defiantly speak to yr Docs about yr symptoms , mine became so low I was extremly aneamic , started to loose my hair & nails because yr body concentrates on the red blood cells you do have going to the most important parts ie organs .

I also had lack of concentration ( brain fog ) of course tiredness doesn't help this & also the liver does so many jobs which PBC interferes with more depending on yr stage .

Didn't have problems with taste pre op but do now due to my meds , although I also have sjogrens syndrome ( another autoimmune brought on by PBC) which results in a dry mouth & eyes - don't produce enough siliva or tears .

It is always recommended we exercise to help beat the fatigue & produce more energy & it's amazing & inspirational that you are a gymnastic champion but maybe yr exercise routine is a bit more than yr body can handle or you may need to rest up more inbetween , we are all different in what our body can handle , but always keep yr Docs / consultant upto speed with regards to any changes .

I too stopped Urso around 5 yrs ago , it upset my stomach too but I'd become none responsive to it . I also started with the itch - but that's another story !

Hopefully you will get some of yr issues sorted , I wish you all the best .

Take Care xx

[Han73 in reply to vicary]

Thank you so much your ideas around iron are definitely worth looking into as I take iron tablets but not sure if they are working enough!!

[vicary in reply to Han73]

My Iron tablets get it upto a certain level , then they drop again ! You may also need folic acid too , hope you get to the bottom of it xx

[Huggy7614]

Hi Hannah,

I agree, very impressive re the gymnastics!!

When were your last set of bloods done, were results ok there??

Tiredness when it hits can be extreme. There were days when I would be driving home from work, stop at traffic lights, and close my eyes! It was a struggle to re open them. It can be very severe. My days were my bleughh days!!

It would be worth mentioning your change in symptoms to your consultant at next review. Other medication is now available if Urso is not working for you.

You should always be aware of changes, and let your medical team know. It may be nothing, but......

Good luck

Andy

[ENuk]

Hi, I am relate to many of your symptoms. I would also suggest you are in the peri menopause stage and that adds yet another layer of challenge.

Initiallly my symptoms were ascribed to peri menopause and then later PBC. I would think there is some overlap as friends without PBC also display similar symptoms..brain fog, dizziness etc.

It would be worth getting blood results if not on a regular basis.

[Han73]

Thank you so much for your reply that had crossed my mind so useful to here that advice

[Han73]

Good question not had bloods done since August so I'll set that up ASAP

[HermansMom]

I have all the symptoms above, except the dizziness and lost of taste. I hope your specialist offered another alternative to Urso, as PBC should never go untreated.

[geraldine60]

Hello, I'm anxiously waiting on my diagnosis but hear people have wide ranging symptoms. I had very bad brain fog,fatigue (common), itching and severe dry nose and dry eye needing ointment. The Hepatology nurse should be able to help.