Brain Fog

[Gaspereaux]

Good morning,

I was diagnosed in November from routine bloodwork with PBC. Started URSO immediately, but at 750 mg URSO daily which, at 61 kg, may not be enough. I dont have tests again until mid May. Can it still have some positive effect? Can brain fog be a result of URSO not working? I can write a post one evening and by the next day forget i ever wrote it! I will also have Fibroscan when i return from Florida. I am trying to make the best of things here, and am grateful to be here, but the joint pain, brain fog kind of get me known, especially in the evenings.

Should i be worried?

Will even a little URSO help? I dont really want to increase my intake until i see the doctor….

[butterflyEi]

The PBC Foundation have an excellent chart on their web site which gives guidance on the weight to kilogram dosage. pbcfoundation.org.uk/wp-con...

This taken from the PBC Foundation's website:- "There are recent and ongoing studies looking for links between fatigue and cognitive impairment (or what patients often refer to as “brain fog”). Again, this is a subject about which we do not have a full understanding, but research is beginning to associate these two features of PBC."

URSO apparently is a slowly increasing medication as it builds up in the system (heard Professor Jones say this).

Symptoms do not reflect disease progression.

Mid May will come round quickly, try not to worry, easier said than done I know but enjoy Florida and the rest of your vacation.

I was diagnosed in 2006. Have suffered the so called itch of PBC got medicated nowadays I have brain fog which I find most irritating but sometimes a word that pops out is much more amusing than the word I should have used.

best wishes

[DonnaBoll Administrator]

Whomever gave you the Urso should make sure it is the right dose. This is SO important!!! It us always based on your weight - nothing else. 13-15mgs/kg of body weight. I don't really think you should wait if you are the wrong dose. Not enough Urso can make your lab results inaccurate. Please check your dose.

[Greeenbean]

I have been taking Urso for 23 years. I take 500 mg 2X. I have had very few if any problems with it and feel very fortunate. Brain fog and pain may not be related to taking Urso. I have recently added RA to my autoimmune diagnoses and have found that the inflammation involved seems to have increased fatigue and brain fog. I have also added an immunosuppressant. I find it’s a delicate balance and the gradual deterioration of my liver seems to increase my response to medication in general. I am 68 and have noted the decline in the last two or three years. I find it difficult to feel like I have an advocate who manages or oversees my meds and overall condition. I recently had a doctor say, “we just don’t know.” I’m not being negative. I find her honesty somewhat comforting given the complicated nature of multiple autoimmune conditions.

[DonnaBoll Administrator]

All of us experience PBC differently. Itching, joint pain, fatigue and brain fog - although all are common - everyone experiences any, all, or none at various times. See what your lab results are to see if the Urso is improving your numbers in your liver panel. Make sure your doctor knows of any changes physically as well as mentally

[Readlots]

Brain fog and fatigue are definitely symptoms of PBC but also of Long Covid and other illnesses. Being on the right dose of Urso may help, but you kind of adapt and learn to live around these symptoms. I stopped sending emails at work after 3 pm, saved them as drafts and checked them in the morning before sending. My family know to text me things they want me to do because if they ask me, I forget. I use my calendar and reminders a lot. I plan to the things Iwant todo earlier inthedayand nap in the afternoon. Some days I get a second wind in the evening, some days I don’t. I also don’t beat myself up about it. Enjoy Florida - have lots of snoozes in the sunshine. Don’t pressure yourself into doing too much, just enjoy the things you do do.

[Readlots]

reading this back I can see why I shouldn’t post after 3pm 🤣