Hi
Can I ask all UK readers. I assumed as I have PBC I would receive a letter from my local Health Centre about the 12 week self isolation but as of yet I have not received any notification even though I recieve the flu vaccine yearly. Does PCB not fit this criteria?
Thanks
Hi stevie1,
PBC isnt on the list for shielding. AIH is because of the medication for it is an immunesupressant. Some of us have PBC/AIH overlap which puts us in the shielding category.
Keep safe
Thank you. Keep safe 🌈
Hi Stevie
I haven't received a letter, but have received 2 separate text notifications from NHS advising me to self isolate for weeks. First one I received mid April and then I received another one on Thursday - I hope it doesn't mean 12 weeks from Thursday!!
When I received the first message I rang my Gastro dept and was told because I receive the flu vaccine due to health conditions (PBC) that I need to self-isolate for 12 weeks. I was told self isolating for 12 weeks is slightly different to shielding which is for a category of extremely vulnerable people who should 'minimise all non-essential contact with other members of their household'. A colleague is Sheilding and he is basically avoiding any contact at home with his wife and adult children who live with him.
I'm not sure why some of us have been advised to self isolate and some of us haven't. If you are unsure contact your GP surgery who may be able to help clarify. A friend has a long term health condition and didn't receive any correspondence so contacted her GP who confirmed she should self isolate.
Take care and stay safe x
Thank you 🌈
Hi there,
Think it depends which area you live in, my brother in law had one cause he had a kidney transplant. He showed me the letter and it did say you should be shielded if you have single organ disease. 🤔 I have pbc and progressed to cirrhosis but iv not got a letter go figure.
My letter never arrived. My GP rang to see if id got it. I got 1 from the surgery 7 weeks late. Mine stated underlying health issues and to shield...for me lung related. Pbc and thyroid and having flu jab meant i was vulnerable but underlying health risks meant i was at high risk. Vulnerable advised to self isolate. My letter said to shield.
Thank you 🌈
I was initially diagnosed with AIH, which was changed to PBC. The consultant told me that the change in diagnosis is good news, in general, and also because of Covid. I was told I'm not at higher risk. I have mild asthma as well, so get the flu vaccine, and even that doesn't seem to make a difference.
This makes sense to me. I was diagnosed with PBC 3 years ago with possible AIH overlap. When lockdown started I was on the list of those who should work from home but not on the list for shielding - I also have yearly flu jab. I have only been on URSO since the steroids were stopped for me about 2 years ago. Unfortunately I have had hepatitis during lockdown and my hep now thinks that I do have AIH. I am going onto some kind of steroid (Budesonide) in the next couple of days and have been told that this now means that I will now get a letter telling me to shield.
So the reverse from you Kakey.
I am so pleased that your new diagnosis is a positive result.
Take care
Thank you so much. I'm sorry to hear you're dealing with both, especially at this worst of times for picking up a new medication like that. Best of luck with the budesonide.
I worry overlap will be in my future too, my various tests results weren't clear cut.
Thanks for your reply. I will keep my fingers crossed for you.
I got a shielding letter, but I think that was for asthma, not PBC.
I live in England & received no letter from government or gp but I'm self isolating anyway for my own protection as I'm 71 with PBC
No letter here either (for my partner).
She has PBC and epilepsy and picks up bugs easily + gets the Flu vaccination.
Hi , I spoke to my gp, and was told to continue working as I didn't receive isolation letter. I also get flu jab annually, and asmatic
Even without a letter I am surprised the GP did not advise you to stay at home especially as government guidelines stated being asthmatic and problems with liver was one of the underlying health conditions they listed. I have not spoken to my GP so sorry if I am wrong. I just assumed PBC would automatically make a person vulnerable due to it being classed as autoimmune disease. Thanks for reply. 🌈
I asked my consultant last week when I had a telephone consultation. He said that my only risk is that I’m over 70. PBC doesn’t mean you have to shield, unless you have had a transplant or are on immunosuppressive drugs. Xx
I’m 65 and my hep pretty well said the same thing. Said follow CDC guidelines. 😊 no special instructions.
I’m in the US and have PBC. no special instructions from my doc. I also had covid 19 before our Stay at home procedure began.
I got one this morning... I do also have Fibro, and receive a 'flu jab, so I'm not sure if it's because of those, the PBC or the combination!
Either way, I'm glad I self-isolated from the beginning!
Hello. I have PBC and asked my GP as I’m a HCA on covid positive ward. I was told I have no more chance of getting it than anyone else. Obviously I’m in a very high risk job and I could ask to change wards but don’t want to leave my team on my ward. GP said only people on immune deficiency would need to isolate/shield.
I'm sheilding due to having a liver transplant and im on immuno-suppressants and steroids have been in my home since 17th march and told its now til 30th June possibly extended futher
I work in a school so not sure how I will keep safe when I return with the little ones , also I use public transport so scared when i have to venture out
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