PBC & the Covid-19 Vaccine

[MarisaD]

Waiting to hear back from my doctor. As an Educator on the Reservation, we may be getting the vaccine. I heard the having PBC you shouldn't take the vaccine?

[Ktltel]

Hi, Who said that? I see my hepatologist next week over ZOOM. I'll have to ask him. I would think getting Covid-19 would be far worse. Anyone want to pipe in about this??

I get a flu shot every year.....no issues. I understand this is different, but, getting Covid-19 is no joke.

Stella❤

[gwillistexas in reply to Ktltel]

I know there is a lot out there about this vaccine. I read somewhere, that it would prepare our immune system to attack the virus. I need to ask my hep as well. But if that is what happens and our immune systems are already backwards and attacking good instead of bad, what happens then? I saw my dr last Friday and failed to ask.

[Ktltel in reply to gwillistexas]

Hi🙋‍♀️,How are you? I'm ok. Going absolutely nowhere.....staying home etc. I'll definitely post what he says. (Dr. Jody Olson K.U. Med. KC)

Stella❤

[Ellewoods1 in reply to gwillistexas]

Did you have your biopsy? Hope you’re feeling ok.

[iagra]

The doctors make recommendations for covid immunization per government guidelines (CDC in the US, and similar organizations in other countries). You can go to their websites and read the guidelines for the liver disease, autoimmune deficiency, etc. and covid vaccination.

[butterflyEi]

Hello Ktltel and gwillistexas , not seen you in a while, hope you are both well.

The PBC Foundation has been organising regular webinar with Professors through internet links most Tuesday afternoons at 1400 hours GMT (UK time) since the beginning of COVID. One regular topic of conversation of recent times is the vaccine. These hourly sessions can be found on their facebook page. Yesterday was Professor Neuburger and next week it is Professor Jones both eminent professionals in the world of PBC. The topic of the vaccine is much on people's minds. I understand from these conversations that if you are well with your PBC then the vaccine will be recommended to you in much the same way that the annual flu vaccination is recommended.

MarisaD I am sure the PBC Foundation would be able to give more in depth information relative to your current wellness or direct you to the relevant webinar if you email them, if you prefer face to face I understand that they also use skype and messenger. Hope this is helpful to you.

best wishes

[gwillistexas in reply to butterflyEi]

Hi butterflyEi...yes, I seem to be doing good. How are you doing?

[butterflyEi in reply to gwillistexas]

good thank you

[CriCutLady]

My doctor advised me not to take any vaccines. He has two daughters with autoimmune diseases and he said people who have an autoimmune disease should not get vaccinated. You can do a Google search on this a find tons of supportive data. I’m actually getting a COVID test today. I’ve been sick since Sunday, but my body is fighting whatever I have on it’s own. I feel a lot better today, but my doctor thinks I should still get tested.

[gwillistexas in reply to CriCutLady]

Thank you for that. I’m reluctant to get the vaccine although I’ve not asked my hep.

[Bama_girl in reply to gwillistexas]

Just seeing this. I haven’t been on the site in quite a while. But wanted to leave my input for what it is worth. 🤗 My family and I had the virus in June/July. Most of our cases were mild. 🙌🏻

I most definitely WILL NOT be taking the vaccine. Until it has been around for a very long while and been proven to be 100% safe and effective. Why take an experimental vaccine for a virus that has a 97% - 99.75% survival/recovery rate? And.....You can still contract the virus, even after vaccination.... 🤷🏻‍♀️

[gwillistexas in reply to Bama_girl]

Good Morning. I’m not planning to take the vaccine myself. There is just something I’m not trusting about it. I thought I might take the J & J but not too sold on it either. That one does get into your dna, as explained by our infectious disease expert. I’ve known people to take Pfizer and Moderna and have zero issues. I’ve known very few who were very sick after second shot, but very sick. I’m allergic to so many drugs which is another reason why I’m leery of the vaccine. 🤷‍♀️

[CeeJay56 in reply to gwillistexas]

I have many drug allergies (penicillins, cephalosporins, bee venom, etc., etc.) but both my primary and hepatologist strongly recommended I take the COVID19 vaccine. I understand your hesitation but worry that too many Americans are under-estimating the virus. The virus and variants have run rampant in Florida and wherever vaccination rates are low so I took the Pfizer-BioNTech in March and had no ill effects.

Many of our friends and neighbors have been ill with COVID19 and one of our neighbors has died after an extended time on ventilation and a horrible battle to survive. I'd rather risk a reaction to the immunization than die a miserable death with the COVID19 virus.

I hope everyone will be vaccinated not just for themselves, but to safeguard friends and family who might be vulnerable to the worst reactions to COVID19 infection.

Take care & be well!

[gwillistexas in reply to CeeJay56]

Yes, I’m allergic to penicillins, sulfa and a few others. Extremely allergic to vancomycin. So like yourself, it is a concern. My hep prefers Pfizer and my rheumatologist as well. I’m keeping a close watch on the delta in the news. Our infectious disease dr/epidemiologist, said today that 90-95% of the hospitalizations are non vaccinated. Scary.

[Ktltel]

Update: My hep says he's telling all his patients to get the shot. (Those sensitive for allergies should speak to their doctor about it because several now have had allergic reactions to it. )

Those "recently" transplanted he's not recommending they get the covid-19 shot just yet. Eventually, they will he said.

Most places that have the vaccine and are giving it to ones are recommending you stay an extra 15min. or longer after you receive it. They want to see if you have any kind of allergic reaction.

Stella❤

[ninjagirlwebb in reply to Ktltel]

It is not available to the general public yet at least those under a certain age. Saw my hep 2 days ago and I asked him to let me know when the vaccine will be available for his patients.

He hasn’t heard anything yet but told me he will definitely let me know. He got his pfizer vaccine already. He didn’t say pbc patients should avoid this vaccine. So I think it is best to get the vaccine.

[Ktltel in reply to ninjagirlwebb]

Yep, that's what mine said as well. As long as you aren't newly transplanted.

[gwillistexas in reply to ninjagirlwebb]

It’s available here to 65 and older and over 18 with at least one chronic health condition.

[ninjagirlwebb in reply to gwillistexas]

Not available in ny yet for me.

[gwillistexas in reply to ninjagirlwebb]

We are running short of supply

[ninjagirlwebb in reply to gwillistexas]

US not doing a great job of distribution. And in ny there was an urgent care chain giving vaccines preferentially to patients not in high priority groups. NY is investigating and governor Cuomo signed an executive order for a million dollar fine plus suspension of operating license to deter these situations.

[gwillistexas in reply to ninjagirlwebb]

Oh that’s not good. Deprived those who were high risk. I’m sure I’ll be seeing more on what he does.

[ninjagirlwebb in reply to gwillistexas]

Also I read that spouses of doctors are getting them as well as cosmetic surgeons. I don’t think plastic surgeons are at high risk vs Emergency room nurses and doctors. Nothing is equitable.

[gwillistexas in reply to ninjagirlwebb]

I agree with you. It is being handled poorly in some ways.

[gwillistexas in reply to ninjagirlwebb]

Our hospitals are overloaded as I know many are. Our % is over 19. They said today, that about 1 of every 5 patients is Covid. Out of control. A friend who has it said her dr told her they’re not doing contact tracing anymore because it’s everywhere. Scary

[ninjagirlwebb in reply to gwillistexas]

NY was really bad last March...was hearing ambulance sirens constantly for at least an entire month. Right now infection rates are about 7.76%. Mask wearing is required here.

[gwillistexas in reply to ninjagirlwebb]

I remember how bad it was there. Our stores have signs to wear masks. Some still don’t and nothing can be done about it. It is not enforced here. Angers me. Although, there are a few stores that absolutely won’t let you in without one.

[gwillistexas in reply to ninjagirlwebb]

Our governor ordered people 65 and older to have it if they wanted it.

[ninjagirlwebb in reply to gwillistexas]

I am not yet 65.

[Biddyb]

According to the specialists on PBC foundation Thursday meetings it’s ok as long as your not being immunosuppressed. See if you can log in to the site and catch up they have been covering the subject for quite a few weeks now

[Nyiah]

I had covid already and it felt like the flu on a 1000. I am more scared of the vaccine.

[Bama_girl in reply to Nyiah]

My family and I have had the virus already as well. A mild case. 🙌🏻 And I definitely WILL NOT be taking an experimental vaccine for a virus that has a 97% - 99.75% survival/recovery rate. You can still get the virus even after being vaccinated 🤷🏻‍♀️.... Maybe after the vaccine has been around for years and been proven 100% safe and effective ... but no way at present. I will take therapeutic route. Trust JESUS and take my vitamins!🤗

[Paste]

My Dr. gave me a note, so I can get the vaccine right away. Of course I am still waiting, because I am not 65.

[mjk98]

I already got Covid and ended up in the hospital it attacked my GI system more than it did my breathing . I winded up getting the infusion which is why I ended up in the hospital my blood pressure was really low and my stomach was really bad I'm supposed to get the shot on May 8th but I don't know if I want it or believe in it since people are getting it anyway with the vaccine I don't trust that my ends on go sky high and since I have PBC with an overlap of AIH not sure what to do

[gwillistexas in reply to mjk98]

I will not have something injected into my body that is not FDA approved. Emergency approval isn’t enough to convince me. I was on the list for J & J but was advised by my dr to not take it. My personal opinion is there is too much unknown about it. I will continue being very cautious and pray I don’t get Covid. Hope you find your answer within yourself to take or not take. 😊🙏🏻

[ninjagirlwebb in reply to mjk98]

I think it best for you to speak to your hepatologist and let him/her advise you.

I got my 2nd pfizer dose yesterday. My hep got me my first appointment. I have a sore arm at injection site.

The vaccine is not 100% effective, but it is 100% effective against severe covid issues. It keeps patients out of the hospital and prevents death. My hep would never recommend anything that would harm his patients. I trust him implicitly.

MRNA technology has been studied for ~20+ years, but it was not needed until this urgent situation for its use in vaccines.

I view the vaccine as a necessary preventive measure.

We are lucky to have the MRNA vaccines. A lot of countries are desperate for them.

Having said that, I don’t trust any of the other vaccines other than pfizer or moderna and if you have a choice, pfizer is the vaccine of choice. This is based on everything (legitimate scientific sources) I read.

I already have plans to meet up with my other fully vaccinated friends to go to an art show in June. Life has to move on and these vaccines are key for that.

[gwillistexas in reply to ninjagirlwebb]

I agree with talking to her hepatologist. Mine never responded to my question. Rheumatologist has better communication than he does.

[ninjagirlwebb in reply to gwillistexas]

I think most doctors would encourage the vaccine unless patient is immuno compromised or is allergic to the ingredients in the vaccine.

[gwillistexas in reply to ninjagirlwebb]

This is true. But I was on the list for J & J when I sent his nurse a msg asking if he approved of me taking it. Simple question. Yes, he encourages the vaccine.

[gwillistexas in reply to ninjagirlwebb]

I’m glad you have done well with the vaccine. 🌞

[janine541]

Hi all I have pbc and have had my vaccine x

[AngelaBarron]

Hi, I have PBC. My husband had covid last year but it was undiagnosed as he presented with them unusual symptoms, which are now recognised. I did not have any symptoms at all. We have both had both our shots now, he has had AstraZeneca and I Pfizer. He had a very mild reaction to the first jab and I had an itch at the injection site for about a week. We are both very grateful to have had the chance of this protection, my husband is diabetic, and we have total faith in the vaccines we were offered.

The virus will mutate over and over again, as a planet we need to do everything in our power to stop it and so far the vaccines seem safe for PBC patients.

Stay strong people, we only have this life, let’s live it.

[ninjagirlwebb in reply to AngelaBarron]

Excellent point on mutations. As global citizens we should do our part to end this pandemic sooner rather than later.

Life is on borrowed time and living a full life means being able to see family and friends, doing the things we enjoy without feeling anxious every time we go out and about.