Hello All, just wanted to check in and see if anyone has spoke to their physicians regarding receiving a Covid-19 Vaccine? I reached out to my doc but only received a general reply by whoever checks his messages. Is one vaccine better than the other? Any adverse reactions that may be related to PSC? I don’t believe I am completely immune suppressed as I am pre transplant.
Glass, you have asked some questions to which I am not sure if there are any iron-clad answers. Doctors may don’t want to give a full yes or no, as they likely do not know either and are scared of being sued.
Well said and I agree. I am scheduled for a vaccine (Pfizer) for next week. I will provide an update a couple days after.
I for one have been very hesitant to take the vaccine post-transplant. I did have my annual appointment Thursday with my liver transplant hepatologist at Duke. He is strongly recommending that I do take the vaccine when I’m eligible in Tier 2. I fall under the 65 year and older group and transplant recipients don’t get any special treatment here. So I’m thinking to go ahead with it when I am eligible. I asked my doctor a lot of hard questions and I believe his decision is based on sound science and not the political speak of the CDC, Fauci & Berx doctors in Washington. He said the political speak of all this he and his team have completely ignored. They have world renown scientists working on this project and he believes this is what we should do. He’s had a number of liver disease patients die of COVID19 and some that got very sick. He did tell me that if I did contract the virus that he wants me to contact my transplant team immediately and they will give me the Regeneron Antibody treatment.
So at this point I will probably go ahead with the virus. My concerns lie in the fact that there’s not been enough time to see what effect it will have on transplant patients who already have a compromised immune system. We sure need a lot of wisdom and discernment to know what is best for us.
The thing with any of the vaccines on the market is that none of the three (Pfizer, Moderna, AstraZeneca) were tested on immune-compromised people. So we have zero knowledge of the adverse effect or specific influence on PSC.
But I am an immunologist and a hopeful one:)
My PSC seems to be not so horribly progressive currently and I hope to receive the vaccine soon enough. In Estonia for instance people receiving immunosuppressants are the one of the first ones in line after the frontline and older risk groups.
Thanks Uku for sharing your perspective on the vaccines. We do need wisdom as patients with PSC and those of us who are post-transplant on whether to proceed or wait for more data. I appreciate your insight.
Just an update on my experience: I received the first dose of the Pfizer/BioNtech vaccine. No issues during the first couple days outside of some soreness in the area of injection. No fevers or chills. By mid-Monday I started to feel fatigued, more than usual. The fatigue was definitely rough through Wed night. By Thursday, I felt much better and back to normal except for some RUQ pain that started Tuesday evening. I tried to get some labs done but don’t have a current standing order and my Docs office is giving me the run around (emory atlanta, bad support staff). Just returned after being in DC and still getting situated. I am now worried about getting the second dose as I fear my reaction will be severe. Just fyi, Im 37 year old, fir, semi-healthy ( at least was bf psc) male and with a varying meld of 12-15. Have an MRCP a week bf the second dose.
I have read somewhere that the vaccine goes to the liver first so I am very reluctant to get the vaccine!
Feeling much better after the weekend and some rest. Back to normal for now, got some labs done so I will see if anything funny pops up.
Spoke with my hepa, I am in my 2 1/2 year post transplant stage. Doc mentioned it’s safe to take the Pfizer or Moderna vaccine. Recommended once I qualify to get vaccinated. Trying to know if anyone else who is in post transplant category has taken the vaccine.
I had the first Moderna Vaccine yesterday. Last night was rough, still feeling the effects today.
Early days of the disease for me with small duct PSC and LFTs ~ 2X norm.
My hepatologist encouraged me to get the vaccine once it was available. I’m now 2 1/2 weeks post my second Moderna vaccine with minimal issues. Aside from the usual shoulder soreness, I had general joint aches and a mild (yet irritating) headache the morning after the injection. My elbows and knees are slightly more achy than usual for my 47 year old self, but otherwise there have been no issues.
Received second dose of Pfizer on Sat am with minimal if any side effects. Sore arm, and joint pain (may or may not be related). My labs and MRCP came bAck better than normal about two weeks after first dose.
My buddy had a transplant in November of 2018. He did the Moderna shot 1 without ANY issues beyond sore arm. Shot two in a week or so.
His team at University of Washington had him wait. He got the go ahead a couple weeks ago. They recommended ONLY the Pfizer or Moderna.
I’m not transplanted and got the Pfizer today - only way I could get it was by volunteering at a clinic. But with folks acting like Covid never happened in so many locals again, I was like, it’s time. Took me a few tries to get there, but now after shot 1, I feel pure “relief” to be honest.
Fingers crossed for us all as I’m not a flu shot (never get them) / vaccine girl and only have gotten other vaccines after diagnosis early 2018 as a precaution.