side effects of urso

[Cathycomehome]

hi everyone …

I’m taking a low dose of urso but struggling with flu like symptoms .. has anyone experienced this and found it subsides with time ?

[butterflyEi]

Hi Cathycomehome , i am sorry to read you are still experiencing problems with URSO even though you now take a lower dose. How long have you had the flu like symptoms? Has it been all the time ?

Have you kept a food diary to see if there are any triggers?

Have you seen a specialist yet? If not perhaps you could ask the GP for a full blood count blood test to rule out anything else. If you have not seen a specialist yet then it would be good if the GP could chase it up for you.

Could the flu like symptoms indicate the fatigue that comes with PBC ?

As always with this wretched disease more questions than answers 🙃

[Cathycomehome in reply to butterflyEi]

thanks for your kind reply butterfly , hope you doing well ?

I have struggled on and off with urso .. the flu like side effects are the urso but I was hoping it would be temporary and I could up the dosage . Unfortunately I’m struggling with this med although my alp only slightly raised but liver biopsy says stage 2 .. take care xx

[LorraineLouise]

Cathy

I was just wondering how long you’ve been on the Urso. I remember having flu like symptoms. Extreme nausea. The first three months that I was on it. It takes a long time for your system to adjust to this new medication. I also had a bunch of hair loss. Which resolved, after about six months. Everyone is different. So some have no side effects from it. Others have. I hope this resolves for you.

Best wishes

Lorraine Louise

[Cathycomehome in reply to LorraineLouise]

thank you Lorraine … I have tried urso 3 times in 2 years but given up after a few weeks each time .. usually the tummy pain and nausea got the better of me !!!

This time I have flu like symptoms , even done a covid test which proved negative .. I am trying to find out if this is normal , my consultant away and gp useless .. I would be happy to go through this if it subsides .. only taking 250 a day !!! Take care xx

[LorraineLouise in reply to Cathycomehome]

oh ok. So it’s not a new med for you. I know there is another drug for PBC. Maybe you can try. I’m sorry you’re having to struggle with this. I am so blessed to have a wonderful hepatologist. Who works along with my rheumatologist. It is a wonderful team. I never even have to call. They call me with my results.

Best wishes that you get some relief ,

Lorraine Louise

[Jlruggie]

yes in the early days it felt like the flu but I was running 5k runs, lifting weights and doing a yoga class or Zumba everyday so it didn’t effect too much. The when I took Fenofibrate to see if enzymes would go down, it felt like the flu. I stopped fenofibrate and just keep taking 750 Ursodoil daily. I worry every day if I’m progressing to stage 3-4

[234WARD03]

I had a blood test for vitamins which are hard to take into system with PBC. They found I have B12 deficiency which gives you aching bones etc flu like symptoms. Might be worth checking. B12 beginning to work after a month. On top though I take vit D, calcium. Magnesium, which are all hard to absorb with PBC.