Autoimmune conditions and Covid vaccine

[Eileen-Emily]

PBC & ITP and Covid vaccine is it safe for people with autoimmune illnesses?

[butterflyEi]

As I understand it from various webinar held by the PBC Foundation with their specialists where the vaccine has been discussed it will be beneficial to have the vaccine. I do not know what ITP is, but perhaps best to talk it over with your specialists if you are unsure.

As with the annual flu vaccine I will not hesitate to get the vaccine when offered.

[Eileen-Emily in reply to butterflyEi]

ITP is idiopathic thrombocytopenia purpura an autoimmune illness that affects the platelets in the blood reducing clotting. Normal platelet readings are between 150 - 400. When I was diagnosed it was 10 but now with a medication called Romiplostin that I have to inject every 4 weeks I can maintain a level of at least 70-80. It may very well be linked to my liver but I also have had to have my Thyroid removed and I am on daily thyroxine for life occasionally I suffer from lichen planus as well as PBC . I in common with many other people I appear to have multiple autoimmune conditions and it would be really nice to have confirmed that the Covid vaccine is safe for us. I am 74 years of age and I would quite like to have my 75th Birthday in January celebrate my Silver Wedding in August 🙏

[butterflyEi in reply to Eileen-Emily]

Hi, it is so true that auto immune diseases do not come alone. I have lichen plano pilarius in addition to a couple of others. We certainly meet the challenges that this all brings. May I wish you a happy birthday for January and I sincerely hope that by August we will all be able to hug our loved ones. Happy Anniversary wishes for then Best wishes

[LindaVillanova]

Hi there, PBC Canada has just posted that Dr Hirschfield (PBC specialist) has advised it is safe for us. I think by the time it’s available for “regular” people they will have much more data to share.

[Eileen-Emily in reply to LindaVillanova]

🤞I think you are correct just keep in touch with our Consultants and reports on results and hope by the time it’s our turn to be vaccinated it’s 👌

[liver-bird]

On Good Morning Britain on the morning the Pfizer vaccine was approved, Professor Angus Dalgleish from Oncology at St George's Hospital Tooting said the vaccine is not suitable for everyone and certainly not for those with autoimmune conditions. I have asked the PBC Foundation but not had a direct answer just to listen to the question and answer sessions. They refer to it not being suitable for people on immunosuppressants and those having transplants, but not mentioned the autoimmune element. If I was offered the vaccine, bearing in mind what I heard a Professor say, I would not know what to do. I guess we will hear if there are problems when ai people are vaccinated. I think I will wait for Oxford Astrozenica because it works more like the ordinary flu vaccine which I have had for years with no problems

[gwillistexas in reply to liver-bird]

I listened to Prof David Jones a couple weeks ago. I believe he said he will only take the Pfizer vaccine because it is not live. And If I remember correctly, he said Astra Zenica is live. I’m not willing to take any of it until further in depth research is done to find out what it does to the immune system.

[liver-bird in reply to gwillistexas]

Professor Dalgleish said it's not good to over stimulate the immune system and I have no idea which if any vaccine would do that. My feeling is until they widely use it they are not really sure. In UK they are vaccinating in my area and I may get called so I'll decide then

[gwillistexas in reply to liver-bird]

Very good info and thank you for that. I read something similar about the immune system. My concern is this, if something in the vaccine is supposed to tell our immune systems to attack the Covid then why hasn’t someone found a way through all these years, to reverse our immune system to attack bad instead of good.

[liver-bird in reply to gwillistexas]

A good question. Perhaps some good will come from Covid in terms of learning about other conditions as well as Covid itself

[Ellewoods1 in reply to gwillistexas]

Did you have your biopsy? Thinking of you.

[gwillistexas in reply to Ellewoods1]

Yes, I had it in September. Still mostly stage 2 fibrosis with a little 3. Thanks for asking😊

[Ellewoods1 in reply to gwillistexas]

Glad you haven’t progressed more? What meds are you taking now for the PBC?

[gwillistexas in reply to Ellewoods1]

Well, it showed I have early bridging and I think that’s where my 3 is so there was some progression. My hep drew it out for me a couple weeks ago so I could better understand. I’m still on ocaliva and he will increase to 10 mg when we renew my script in January.

[Ellewoods1 in reply to gwillistexas]

I think I’m at a 3 too. It’s just an awful disease as you can feel good and be deteriorating inside.

[gwillistexas in reply to Ellewoods1]

So true. I feel great and have no symptoms. It’s a bad place to be for all of us.

[gwillistexas in reply to Ellewoods1]

I didn’t ask the name of the new drug but he said he is encouraged with what he knows about it so far.

[gwillistexas in reply to Ellewoods1]

He has also been involved in research and there is a new drug in France. My hep is starting clinical trials on it and asked if I might be interested. But I think probably not. I feel like a guinea pig as it is because ocaliva is still in trials as far as if it helps in the long term.

[Eileen-Emily]

Thank you everyone for your replies and the further debate re Covid vaccines. I speak with my Consultant on 31st re PBC and on 18th January with my Haematologist re PBC and as I do not anticipate being contacted to receive a vaccination before those dates I will ask for their views on Oxford Astrozenica and Pfizer vaccine. I will post their responses and hopefully they will help us make a good decision. Have a very Happy & safe Christmas everyone thank you for being here on this forum it does provide comfort and support. E xx

[Sona_akb]

That’s exactly what I’m wondering about

[Sona_akb]

I had Influenza vaccine recently without any side effect 🧐🧐 but I don’t know if it’s the same as covid or not

[Ktltel]

Hi,

My Hepatologist is Jody Olson at K.U. Medical in Kansas. I just had my annual check up with him and asked him that very question. He told me because of the uptick in cases after the last holiday, he's been doubling his duties working in the ICU Covid-19 unit. He said far, far worse than having autoimmune disease and contracting Covid-19, was being overweight and getting the virus. Those who are obese do not do well at all after getting covid-19. *He recommended that ones with autoimmune diseases absolutely get the vaccine. And if you are overweight doubly so.

Stella❤