I've had PBC since diagnosis 2008. Treatment with URSO and bezafibrate keeps things reasonably stable. I believe in vaccines so have taken 4 Covid shots up to April 22.Soon after April dose I developed very bad pains in hips, thighs, shoulders and upper arms. To cut a long story short, this turned out to be polymyalgia rheumatica (PMR), very debilitating. Clearly it was induced by the mrna vaccine which acts upon proteins, the troublemakers in PBC so I understand. French research is quite specific that the vaccine can lead to this with excellent definitive publication. High CRP and ESR are two probable symptoms.
I am now on steroids, with immediate relief. At last! CRP and ESR on the mend. But liver bloods still extra elevated.
Has anyone else with PBC experienced this? Many thanks, William
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There are questions being asked in the House of Commons by Mr. Andrew Bridgen, MP which I came across on the Dr. J. Campbell You Tube channel yesterday. There seem to be many who are able to attribute their new medical conditions to the vaccines. For myself I am now suffering very painful knuckle joints - difficult to know if it is overuse, the cold weather or age related degeneration or triggered by the vaccines. At last bloods my CRP was elevated but marked down as normal for patient.
Thank you very much. Yes I had noticed. My point was really more specific about those with immune problems like PBC and PMR resulting from the vaccine. It seems that the mrna vaccine messes with proteins which can be at the heart of PBC issues. The vaccines are good I am sure, but in a very few cases there can be a nasty reaction. Thus I believe that there should be a precautionary note about this to GPs, rather than sending me notes all the time that with a liver problem I am vulnerable and thus should be the first to get every vaccine!
And I’ve read many times as I’m sure others have, people with autoimmune conditions/diseases, we’re not included in the trials for the vaccine. So now, all these problems come to surface for some. My hepatologist strongly suggested the vaccine and also my rheumatologist. I’ll be responsible for my own decisions from now on. They have to live with their bodies and we have to live with ours.
It does seem like there’s more coming out about the vaccines, recently. I’ve had the vaccines, two primary and one booster last year and quite gladly. I never had any really notable reactions at the time arm was stiff for a few hours.
I was not classed as vulnerable by the NHS or GP, so I asked my consultant about my vulnerability having PBC. She said I wasn’t vulnerable any more than the general population for my age. (68 at the time and never had covid well not knowingly. )
It’s the conflict between information that’s going around that made me decide not to have this years booster. It seems to me and it’s my personal observation and choice ,that my risk benefit has changed.
I saw the MP debate yesterday what concerned me was the whistle blower had said about heart issues. Stay well and enjoy the festive season everyone.
I got the first three shots but for some reason my instincts said no to this last one. The virus has weakened and I don’t want to take the risk to prevent something now no more dangerous than the flu. Your post makes me more certain. Thanks for sharing.
I got 4 shots, 2 boosters, one of which is the bivalent one. It was fine. I skipped the one booster that was recommended during the Summer since I wanted to wait for the new version. I spoke to my liver specialist and he said I mind as well wait for the new one instead of taking 5 shots but my primary care doctor told me otherwise: that I should get the 4th booster and then the 5th one when it came out. All of the doctors are not on the same page either. So ultimately it is really our decision and what we are comfortable with.
Yes! After my first vaccine I was having a little pain in my right hip. Second vaccine the pain was so bad I literally cried. It went in both hips and my right leg. Couldn’t sit ir lie on my right hip. My internist sent me to a spine specialist. He did X-rays and said I had arthritis in my spine. 2 weeks later the pain completely disappeared and has not returned. My rheumatologist always runs a host of labs and I have never shown to have arthritis. He said he felt the vaccine triggered a flare of some kind and not to take any more. So I know where you’re coming from and I’m sorry you are still dealing with it. I will NEVER take another vaccine for covid.
I'm very sorry to hear that you're going through this. There are quite a few coincidences here...
I have PBC and luckily I haven't had any such reactions to any of the four vaccines I've had. However my husband did, and it seemed to happen very soon after he had his third dose...he ended up with polymyalgia rheumatica for a little over a year...he was on prednisone for about 9 months of that time. It was extremely debilitating for him, very painful. He's been off prednisone for about months and had a booster a couple of months ago with no bad effects.
Here's a coincidence...today he tested positive for Covid. He mentioned that he's concerned because he's feeling pain in his hands, hips and legs. He's been in bed for two days but seems to be feeling just a little better today.
I came onto the site to find out about Covid and PBC because I'm concerned I'll get it now. I just had my last booster a month ago. I really thought about it this last time and almost didn't do it but went through with it.
Thank you to islandanonymous and to all of you. It seems that having short term aches and pains from the Covid jab is normal, but getting PMR directly from it is rare. Even in this case it is the PBC's husband. I know how he felt because I had it for 6 months before steroids and relief. I would be interested in your husband's dose? I demanded 20mg/d per the French formula (0.3mg per kg body weight). But as I have PBC I have to slowly wean off it. Will the PMR come back? As my liver bloods went sky high my liver man wants to change me over from prednisolone when it has reduced to 5 mg/day to Budesonide as this is tolerated better long term apparently.
Just have to wait and see. Thanks all your replies. William
My husband started at 5 mg (to make sure he could tolerate it) and felt almost instantly better. They raised it to 15 mg and then over about 9 months lowered the dosage. Everybody has to slowly wean off it, not just those with PBC, in order for our bodies to begin producing steroids normally again.
I just wanted to point out that my husband has had a booster after he stopped taking prednisone and he was fine. He feels much better today as he's recuperating from Covid and doesn't have any pain in his hands, etc. now. Phew!
BTW I was misdiagnosed with lupus when I was 10 and I took prednisone for two years. I'm pretty convinced now that the pain I felt (arms and legs mostly) was due to inflammation from my very high sugar intake. But who knows for sure?
I happen to know two people, a couple actually, who both have PMR. Their diets are pretty awful...lots of sugary baked goods, etc. My personal opinion is, sugar is the devil and a good diet is essential to good health.
That is so helpful and thank you so much. I went through 6 months of misery knowing something was wrong but no help. Then self diagnosis and self prescription! It was always hips/thighs, shoulders/upper arms. Then it went to right wrist and hand, then later to left wrist and hand. So I was interested in your comment about hands!My theory is that the PMR storm put inflammation into normal spots, then made the liver inflammation worse, then went for the spinal cord which is why the invasion to the wrists and hands.
Thanks also you comments about diet. I am careful and will heed your sugar warning although generally I'm more into savoury these days. However, it's Christmas- I can't resist mince pies and brandy butter every day. Oh dear!
I'm glad you found my response somewhat helpful. Hang in there, William! My husband went from a very active man (long walks, biking every day, tai chi 3x a week, and more) to someone who couldn't even shuffle along on a slow walk. It was awful. Prednisone saved him but of course you don't want to be on it for long. And since being off steroids, he's totally back to normal, knock on wood.
I don't blame you for not being able to resist mince pies - now you've given me a craving, lol! My mom's mince pies were irresistible. I've never had brandy butter but it's probably best I never find out how good it is!
Thank you. Yes I felt I'd aged 10 years in 6 months. Normally fit, 5-6 mile walks no problem and so on. Now I'm back to how I was. You give me hope with the comment that 5mg might be enough. But every patient is different so wait and see. And remember that the patient knows at least as much as the specialist! William
I'm a firm believer in the patient often knowing more than the specialist! In fact my husband didn't get in to see a specialist until it had almost run its course. Hopefully you can get back to no prednisone at all, like my husband did eventually. I was just reading up on it again and see that it typically lasts 1-3 years. I had read before that it only lasts up to a year. Hopefully you're be done with it before you know it!
We are on the same track. You are on your own! Bach on diagnosis 2008, URSO didn't work so "we can't help you". So it was own research that found some work on fibrates. Sekf prescribed have been on it ever since. Now it is common talk. 14 years ago - nothing!
I have poly myalgia. Rheumatic as well on Steroids for 2 years. I had it long before I had my first Vaccine. It’s another complications that those of us that have PBC or other liver disease and has absolutely nothing to do with the vaccine. I was reluctant to get the vaccine because of PBC, PMR, and being on the steroid but my rheumatologist consulted an allergy and infectious disease specialist and he reassured me I was better off taking anything that might lessen my changes of getting Covid
I ended up being in a centre that had an out break and did get Covid but it was very mild case because the vaccine had prepared my immune symptom to recognize and fight it.
Poly myalgia is common with those of us with immune related illnesses
I’m slowly getting better.
Vaccines do not cause PMR it’s been around for a long time before any mRNA vaccine
after reading through this thread - I’m so thankful that I have never gotten the covid vax. I had covid when it first came out and thankfully it was mild - requiring zero medical attention. And no further problems. I have been diagnosed with PBC since early 2019 and have been taking Ursodiol. I’ve still had crazy itching and it’s nice to see that there is a medication for that. I’ll definitely be asking my doctor about it. I can’t seem to get relief from the widespread pain and it’s been very debilitating. Since I can’t take narcotic pain relievers my docs have maintained the recommendation of medical marijuana. It works but now I’m “high” most of the time and that limits a lot. I’m basically housebound because I don’t want to drive under the influence. If I want to leave the house I basically don’t take my morning meds and just suffer through the symptoms until I can get back home.
I had first 3 vaccines. Did catch covid, very mild case, thankfully. Was told by health professional that if I wanted to have 4th shot, to wait 6 months as I now had an immunity same as if had the 4th vaccine. The 6 months ended last month, Dec. Have not had 4 th & pretty sure I will not So many I know who got covid after 4th shot have been very ill.And the lingering fatigue stayed with them long time.
I have not discussed with health professionals but I am not very adverse to having it .After reading some stories here ..for sure....no 4th shot.
Maybe to just reply at this point about URSO. The latest research, from Cambridge University no less, indicates that URSO has the effect of closing the door to Covid getting into the cells. This is serious good news. So others may in future be on URSO not for PBC but to prevent Covid. Every cloud has a silver lining.
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