Patients Castleman disease
Topic of the discussion
Posted on 01/04/2021 18:02
I'm curious to hear if any of you have gotten the COVID jab yet? I'm due to get mine soon I expect and I'm curious to hear some of your experiences.
I was a little hesitant at the beginning about it but I've been reassured by everyone and their cousin that it's safe for us!
Beginning of the discussion - 02/04/2021COVID and Castleman: Have or will you get the COVID vaccine? https://www.carenity.co.uk/forum/castleman-disease/living-with-castleman-disease/covid-and-castleman-have-or-will-you-get-the-c-4093
Posted on 02/04/2021 09:32
Hello friedegg, thank you for opening this discussion! Let me tag some other members who can possibly share with you!
Hi everyone, how are you today? Have any of you received the COVID-19 vaccine? Did your doctor or medical team give you any particular advice about it? If you have gotten it, how was your experience? Did you have any side effects?
@Bryan123 @JessicaAli @Mustang @jjmurry @Jwalbornperales @Alice03 @Paddy123 @georgiana.em_gil @Linaciccarelli @Faithforever7 @Micki1559 @PennyLane @Caski33 @Sashvin @Wellemma @Sarahjane79 @LukeIan
Feel free to share here!
Posted on 05/04/2021 18:56
No, I have not received the covid vaccine. Both of my oncologists have said to make sure you are about 2 weeks out from treatment if you do choose to get the vaccine.
Posted on 06/04/2021 02:23
I was told it will it hurt to get it just may not produce enough antibodies
but to get it anyway because the alternative is worse
also DONT GET THE J&J.
that one is the live vaccine
also was told by cdcn that dr fagenbaum did get the maderna but either that or the phizer are ok
Posted on 06/04/2021 02:24
I did get the phizer
wih no side affects
only thing I was 5 days after last rituxan infusion but hoping to e second dose will do better if the first didnt do much
Posted on 15/04/2021 18:14
I was infected with Covid in August of 2020 and I wasn’t diagnosed until Nov 2020 with UCD. No treatments, only removal of lymph nodes. PET scan was clear in December.
I had both doses of the Pfizer vaccine, 2nd one this past Tuesday.
The first dose I was sick for 2-3 days, 100 fever, exhausted, achy, beat down. Then was fine. Just received the 2nd on Tuesday 4/13 and had a headache for 2 days, run down but no fever. I’m doing much better today!
I have my 6month PET scan next month. We will see!! Praying for the best!
Posted on 28/04/2021 14:40
I heard the same as @jjmurry and @Ikeaaron, that you have to have been out of treatment a bit before you can get it and that you can't get certain jabs. My cousin won't be getting his since he's still in treatment and he's young. I'm glad to hear that no one has had any bad reactions or anything.
Posted on 13/05/2021 11:51
I have Ucd and have had both my covid jabs the Oxford one, felt fine but still unsure if it will work due to having such a low immune system , as the jab needs to attach its self to my immune system but I don't have a lot there for it to stick to, I have applied for a antibody test, so if I'm allowed to have one, ( fingers crossed) I should know after that if the jab has worked
Posted on 07/09/2021 13:41
I had to wait a bit but I ended up getting the Pfizer too. The first jab was alright but the second one had me in bed all day feeling run down. Does anyone know if we're eligible for or should get the booster?