PBC and C19

[Gioielli5]

Does anyone know of a PBC sufferer who has had Covid 19 and knows whether or not they had further complications due to our disease?

[Jammygill]

I have had covid 19 and have PBC but also have asthma and osteoarthritis. Although I was hospitalised for two weeks and needed oxygen as well as medication there were no complications because of the PBC. I am now struggling even more with the fatigue since recovering however and my asthma is still a bit of an issue since my discharge from hospital back in may. It has left me a lot weaker months later. Hope this answers your question a bit.

[Gioielli in reply to Jammygill]

Get better soon. Thanks for your reply.

[Jammygill in reply to Gioielli]

Thank you.

[Carolebroadbent]

Hi. I have tested positive with covid 19 I also have pbc. Im into my last few days of isolation.

I havent had any other symptoms other than a cough. I had a couple of days being unwell . But nothing too serious x

[Gioielli in reply to Carolebroadbent]

That’s good news. 😊

[littysgirl]

I had Covid in mid March and was hospitalized for 10 days with oxygen but not on a ventilator. I also have diabetes ( under control - pills, not injections) asthma, am overweight, have high blood pressure but under control. My pulmonologist says I am very lucky. I have had some residual problems that I believe are the result of covid but from what I can see at this time, many people who got this virus early on have had trouble. People who are getting it now, seem to be less sick. I don't know if the virus has changed or if the medical field has figured out a better treatment or what. I can tell you that when I was in the hospital in March, the most common thing I heard when I asked a question was a shrug and the words " we don't know yet" They were just guessing and flying by the seat of their pants. I would get a medication one day and the next day I wouldn't. If I noticed it and asked, I would hear that they no longer thought that that drug or that supplement was a good idea. We were guinea pigs. My continuing issues were hair loss (I've had that before after a serious illness and wasn't worried about that. It has stopped) continuing shortness of breath - it's just part of my life now, and what I think was an inflammation of the blood vessels which put me back in the hospital two weeks ago for 7 days. My doctors are not saying that definitively yet but I think that's the way it's going . I read everything I can find and especially I read daily a Facebook page called Survivor Corps which is starting to get noticed in the media and press. It's an open page. There are over 100,000 members - 90% are people who have had Covid and are not just getting better as we are told that most people do. Some are people who are afraid of getting sick and are reading, looking for ideas, vitamins etc to do to avoid getting sick. Others have a loved one who is sick and they are looking for answers. Some people give advice which I generally read with a grain of salt. What I do appreciate is people who write in and say - this is what happened to me and this is what my doctor told me or did. It shows you when other people are having the same symptoms are you are and gives you questions to ask your own doctor. I have seen that many people had this inflammatory blood vessel response - an over reaction of the immune system. Some people get blood clots. I was sent to the hospital because blood tests indicated I had clots. I didn't. However I was completely filled with retained fluid for some reason and it caused congestive heart failure. I have never had heart problems before now. They kept me in the hospital for a week on intravenous diuretics which are VERY powerful and when I went home 7 days later, I was 25 pounds lighter - all from fluid. I lost another 20 pounds at home in ten days, so I removed 45 pounds in three weeks. No wonder I couldn't walk without getting dizzy! Now I have to figure out how to maintain this balance and see if now that the fluids are gone, will my heart irregularity resolve itself. My doctor seems to think that it might since I don't have a history of this. If that happens, then I believe this will be blamed on Covid.

sorry this was so long! I didn't expect that when I started!

[ninjagirlwebb in reply to littysgirl]

Get well soon! What an ordeal but glad you pulled through!

[Gioielli in reply to littysgirl]

OMG you have certainly been through a lot. You must feel very lucky that you have managed to pull through. I and I am sure everyone on this site wishes you a full and speedy recovery and no more drawbacks. Take care of yourself. Xx

[Mumoftwo81]

I have PBC and I tested positive for COVID-19 last Thursday. I basically had what I thought was a sinus/virally head cold. No cough, no temp but then lost all sense of taste & smell so got a test. I would say I have it very mild. Just feel a bit wiped out but no other complications. Hard to believe that I worked as a nurse in intensive care through the first wave of this horrible disease and managed to escape it and now I pick it up since the kids have gone back to school! 🤦🏽‍♀️ Try not to worry!

[Gioielli]

The virus appears to hit people of all ages differently but still life changing. As a granny on school pick ups and after school care, I do worry about my chances of contracting it. Strongly believe that parents with school age children should have fully funded furlough until they are closed - which they inevitably have to be in order to stop the spread. Keep safe and pleased you are on the mend. X

[PBCRobert Partner]

The general data says that PBC is not a risk factor for either catchin Covid or developing more complications from Covid.

Transplant recipients and cirrhotics need to be more careful though.

[NotorDJP]

I know this is an old post, but I was diagnosed with COVID this week. Its been causing me pain in my liver, but I've also been taking high doses of vitamins. I stopped the vitamins today. I was diagnosed in 2014 with stage two PBC. I'm more than likely Stage 2-3 now. This has really felt more like the viral mono I had years ago. I've not felt this poor since my initial diagnosis. The body pains and fatigue has been the worst. I pray this isn't going to push me further down the road towards transplant list. Just concerned.