PBC fatigue vaccine question

[pbcgirl]

Hi Everyone. I was diagnosed around 10 years ago with PBC. Urso worked at first, then they had to increase the dose. Ocaliva was added a couple of years ago. I find my exhausted bad days are becoming more frequent and find this discouraging. Just wondering how others have faired after the vaccine. I’m absolutely terrified to get it. Thanks in advance.

[butterflyEi]

Sorry to read that the fatigue days are becoming worse. I have had no real problems with vaccination. I had the Sinovac (2 doses) with no problems at all and have just had the Pfizer booster which wiped me out for a couple of days. Are you thinking that the fatigue is associated to the vaccine rather than PBC?

[pbcgirl in reply to butterflyEi]

No, I haven’t had the vaccine yet. It’s totally the PBC causing the fatigue. Thank you for the info. Not sure if we can get Sinivac here. I really appreciate your input.

[Michi1]

I do respond well to Urso and do not have PBC-related fatigue. I got the Pfizer vaccine. The first shot was no big deal, just some soreness in my arm. The second had me in bed for a full day the day after my shot and the arm pain was 10x worse, but after that one day I felt fine. I started feeling lousy about 5 p.m. after getting the shot around 9 a.m. I'd plan for a day off the day after your shot if you get it. I've heard Moderna is worse and my symptoms weren't much worse or about the same as several of my friends who do not have PBC.

[pbcgirl in reply to Michi1]

Thank you for the reply. We have both Pfizer and Moderna here. I’m just trying to research to see how everyone made out so I can make a better informed decision. Thanks again for your reply.

[Stub007 in reply to pbcgirl]

I also had Pfizer, my second dose being 28 January and my booster (by a stroke of sheer luck) last week. I had minimal soreness around the stick site with the first two. With the booster, I didn’t feel the stick and had no detectable reaction. I have nothing negative to report regarding my personal experience with the Pfizer vaccine. Don

[pbcgirl in reply to Stub007]

Thank you

[DonnaBoll Administrator in reply to pbcgirl]

I had both Pfizer and Moderna with no ill effects.The booster I got about a month ago was fine too. You mentioned that your doctor increased your Urso dose. Urso is always - and only -based on your weight. it's never dosed according to symptoms or your liver numbers. Just want to let you know that. How are your numbers?

[Candy12]

I had both Pfizer shots. I never had any real reaction to either of them.

I get more side effects from the flu jabs.

[pbcgirl in reply to Candy12]

Thanks for the reply

[DonnaBoll Administrator in reply to Candy12]

for me no problems with the Covid shots/booster, but I sure felt badly for a day or two after the shingles vaccine a month or so ago....

[ninjagirlwebb]

I had both Pfizer shots. The injection site was sore for 2-3 days and I was very tired the 2nd day. I will be getting the booster shot next week. Pfizer dosage is less than Moderna. In general, anyone I know who got Moderna had an more intense effect.

Having said that, because Moderna uses more vaccine studies have shown its effect lasts longer than Pfizer. Moderna is looking for USDA emergency approval for a booster but it would be at 1/2 of what the normal dosage was (first 2 shots.)

I think everyone whose doctors recommend the vaccine should take it. It is not smart to take the unvaccinated route especially if your doctors recommend it.

[Turquoise2075 in reply to ninjagirlwebb]

I have had both my Pfizer shots. I had no symptoms from the first one. About 24 hours after the second one I developed chills and body aches but these only lasted for a day (which is a normal response to the second Pfizer jab). After 2 days I was back to normal.

I was a bit anxious myself with regard to having an autoimmune condition and getting the vaccine, mainly in that I didn't want it to impact the PBC negatively (I was diagnosed with PBC in November last year) but still wanted to get vaccinated. I asked my liver specialist about it just to make sure it was ok to go ahead and he said yes. For me it has been fine and I feel a lot better knowing that I am vaccinated.

[pbcgirl in reply to Turquoise2075]

Thank you

[pbcgirl in reply to Turquoise2075]

That is my concern as well, I don't want the PBC to progress. Thanks for your reply.

[DonnaBoll Administrator in reply to Turquoise2075]

It doesn't impact the PBC at all. Getting it will hopefully help not to get Covid or at least help minimize the symptoms.

[pbcgirl in reply to ninjagirlwebb]

Thank you

[gwillistexas]

I had Pfizer. No real issues with either, except the day after the second shot, fatigue hit me. I slept 10 hours that night. Really haven’t felt like myself since. I do know some of my labs went up and my estimated kidney function dropped. The vaccine was the only thing I did different. Even thought my drs recommended the vaccine, I wouldn’t do it again. I will not take the booster. I wish you well with your decision.

[pbcgirl in reply to gwillistexas]

Thank you for your honesty. I have a friend that doesn’t have PBC and hasn’t felt good since she got it.

So hard to make a decision.

[gwillistexas in reply to pbcgirl]

Yes it is a hard decision. But what’s done is done. I hope your friend gets along okay. 😊

[Boysanboys59]

Hi p b c girl, I’ve had p b c for over 10 yrs now, haven’t taken any meds as I seem to collect there side effects, so no meds in all that time, I’ve had both vivid vacines , numonia and flu jabs and apart from a sore arm and a bit off for a few days I’m fine😬I think I’m our shoes it’s safer to have the jab . All the best

[Boysanboys59]

Hi p b c girl, I’ve had p b c a few yrs longer than you , I also have the start of fibrosis , I can’t tolerate urso or obetheolic acid so have had no meds. I’ve had both Covid jabs Astra Zenica,flu and numonia jabs and apart from a sore arm and feeling off for a few days I’ve been ok, I also suffer from fatigue , prob better for us to have them than not , all the best 😬🐾

[pbcgirl in reply to Boysanboys59]

Thank you

[DonnaBoll Administrator in reply to Boysanboys59]

sorry to hear you can't tolerate Urso or Ocaliva.... has your doctor ever considered fenofibrates? It makes me nervous that you aren't on any medication now. Are you still getting lab work done every 3-6 months though? How are your numbers? Just don't want the fibrosis to increase for you.

[liverinarow]

No problems after having two shots of Pfizer of the Covid 19 vaccine . It has been a few months now since I had the last shot.

[pbcgirl in reply to liverinarow]

Thank you

[Boysanboys59]

You are welcome😊we need to stay safe .

[YuckyDucts]

Hi all. I seem to be the odd one out generally when discussing getting "the jab", but here's my story. I got both Moderna shots in May and had some effects that lasted long enough, that honestly, I'm not going to get a booster, at least for now. I had an ache in the vaccinated arm for several months afterwards, plus my lymph node swelled in that armpit for several months, with occasional pain in it, and more rarely, an ache in the opposite arm pit. I didn't have those problems before. I was diagnosed with PBC & AIH 3 months after being vaccinated, but my liver enzymes were already on the rise before the Vax and I likely had one or both of the AI diseases for many years, so I don't think it caused or activated it. I more suspect that major surgery (total hysterectomy for stage 1b endometrial cancer...cured supposedly from removal) either triggered one of my autoimmune diseases, or possibly exacerbated one or both. Or the surgery may have raised my LFTs, making the diseases/inflammation more evident. Still, there is a doctor who is an expert in Autoimmune diseases who has suggested the vaccination MAY be a trigger for some, but he also said that there is no proof of it. I've never been an anti-vaxer, but it does make me leery. For now, I will keep wearing a mask, social distancing, and hand sanitizing. I may get another Vax at the one-year mark, but I may not. I haven't decided yet. Best wishes and good health to the original poster & everyone!

[pbcgirl in reply to YuckyDucts]

I’m so sorry you’ve gone through that. I’ve heard of several people with sore or swollen arms for an extended period. I did end up getting the Janssen vaccine but I will not likely get another until Novavax is approved here in Canada. I too am not an anti-vaxer but have many questions and have seen and heard many strange things. Again, I’m sorry you had to go through that.

[YuckyDucts in reply to pbcgirl]

Thank you much. Very kind of you to be concerned for me. I've never heard of the vaccinations you mentioned! Guess they don't have those here in the U.S.. Best wishes to you! 🙂

[Katiagreece]

Hi, I had x3 Pfizer. Had Aching and cold symptoms after the booster for 12 hours but no problems after that.

🙂

[pbcgirl in reply to Katiagreece]

That’s wonderful. So glad to hear.

[creedy1]

I had all 3 Pfizer vaccines and had no problems from any of them.

[pbcgirl in reply to creedy1]

Glad to hear, I like to know all sides.

[FairyFae]

Hi,

I had two AZ jabs and then a Pfizer booster. The first one, I felt ill for a week, like a bad cold/mild flu, the second one, it just lasted a couple of days, then with my booster, I just felt a bit rough for an evening.

I do also have Fibro, so it may have hit me a bit harder due to that, I'm not sure... I'm permanently exhausted anyway.

Either way, I would still get it personally, as a week of feeling a bit poorly is a lot better than possibly dying/being horrifically ill🤷‍♀️.

[pbcgirl in reply to FairyFae]

So sorry to hear of your troubles but glad the vaccine was okay

[AM2016]

Hi,Sorry to hear about your fatigue. I've been diagnosed with PBC for seven years. My fatigue is dreadful, and is the worst symptom of my PBC. I've recently also been diagnosed with Fibromyalgia, so between the two I am exhausted virtually all of the time. I had the AZ jab as my first jab, and did feel wiped out for a couple of days but the worst effect was having a really sore arm for six months which spread from the jab site to my upper arm and shoulder. It got better just before I was due to have my second jab, and I was really nervous in case it happened again, but I had it anyway (AZ again) and had no side-effects. I had a Moderna booster with no side-effects. I never really questioned whether or not to have the jabs and I will have any further boosters if they are recommended in the future.

[pbcgirl in reply to AM2016]

Wow. Sore arm for that long but definitely better than the alternative. Glad the other shot and booster went ok

[Candy12 in reply to AM2016]

Sorry to hear you had ongoing pain after vaccination. Look up a condition called SIRVA it’s a needle injury following vaccination. Nothing todo with the vaccine itself, but where the needle was positioned in the wrong place it can happen with any vaccination it’s worth mentioning it to your doctors. Who will be able to determine if this is what caused it.

[DonnaBoll Administrator in reply to AM2016]

We have had in the US boosters available now to get every year. I've had one after the initial 2 vaccines.

[Aussielouise]

I cant add much apart from yes i wasn’t well for a couple of days after the AZ vaccine, but I’m floored after a mild dose of covid with fatigue. I’m just grateful i had the vaccine and only got a mild dose of covid because if this is how i feel after a mild vaccinated dose of covid i hate to think how i would have been unvaccinated.

[pbcgirl in reply to Aussielouise]

Thanks for replying. I have also heard that from others.

[DonnaBoll Administrator in reply to Aussielouise]

I totally agree about feeling blessed to have had a mild case of Covid over a year ago. I, too, wonder how much worse it would have been for me without vaccines. Having had a transplant and immunocompromised it can be scary.