Covid vaccine get it or not?

[weatherman69]

Covid vaccine, we have lost our Rheumy on island over a year ago, and the Internal Medicine doc has not let us know yet or not if my husband, who has GCA, Diabetes Type II with Predisone at 21mg., Htn, and down DVTs and on blood thinner Warfarin should get the vaccine . He also takes Actemra biweekly. Anyone else out there taken the vaccine or not? He is driving me crazy to get it. He is retired military, and I am going to wait until we can get it at the Hospital and not in the home!! I believe in safety and not having him in line for 4 to 5 hours waiting.

[PMRpro Ambassador]

The general advice is that we should get it unless there is a specific reason such as severe allergy not to. There has been a lot of discussion in other threads in the last few days - whether it clarifies it for you or not I don't know.

No-one I know has had to wait for hours, the only wait has been while completing the questionnaire beforehand and the 15 minute monitoring afterwards. There are also reports from several who have already had their first jab - scroll through the past posts to read the comments.

[Nap1 in reply to PMRpro]

I will absolutely get it when it gets here I’m not in a rush. Just wondering if they’re going to tweak the ingredients in the vaccine as a result of the new strain

[PMRpro Ambassador in reply to Nap1]

I imagine they are waiting to find out if it still recognises the new variant - the mRNA versions can be tweaked quite easily I think.

[Thelmarina]

An immunology expert on the BBC, Prof David Salisbury, said that immune suppressed people should take the Phizer vaccine and not the Oxford one. I only caught part of his interview but cannot yet find out why! I’ll share if I get an explanation.

[PMRpro Ambassador in reply to Thelmarina]

He is saying it is a "live" vaccine but the group who are actually working on the vaccine say that that is not entirely true. This was posted on a discussion on the LupusUK forum and explains. the explanation coming from a Professor leading the work:

"I read this earlier on NRAS HU from an admin:

“The (NRAS) helpline has had lots of people contact us regarding comments made on the BBC by retired Professor Salisbury regarding his opinions of the Oxford Covid-19 Vaccine.

I have contacted the media department of vaccine team at Oxford requesting a reply in the media, but in the meantime I have a reply from one of the Professors leading the development of the vaccine, which I though you may find reassuring.

The Oxford-AZ vaccine is only a “live” virus in the sense that it is able to infect mammalian cells bearing its receptor but it is replication deficient, and therefore other definitions would consider it is non-live.

It cannot replicate in humans and does not make more virions after vaccination (usually considered a prerequisite of life), and therefore it is safe in the immunocompromised. Our trials include HIV infected adults in uk and South Africa.

Other replication deficient viral vectors are being used safely and at scale for Ebola in Africa in HIV infected populations.

Andrew J Pollard FRCPCH PhD FMedSci

Professor of Paediatric Infection and Immunity,

Department of Paediatrics,

Fellow, St Cross College

University of Oxford"

If you want to find out more, check the NRAS website Update on the COVID-19 vaccine section as it has great links and lots of information. I am in the process of updating the FAQs as well as attending to the Helpline with reduced staffing hours, but please keep an eye out.”

[Thelmarina in reply to PMRpro]

I knew I could rely on you! Thanks. Mystery cleared up 😀

[weatherman69 in reply to PMRpro]

thank you

[weatherman69 in reply to PMRpro]

how do you find that website, NRAS

[PMRpro Ambassador in reply to weatherman69]

Click on My Hub at the top of the page and then on Find community. Type in NRAS and the link will come up.

[Nap1]

On the same medication. Have had PE and DVT and on blood thinners as well. Actemra is bimonthly not biweekly. I’m waiting for my local hospital to get it. Just in case of an allergic reaction. Hope that helps

[PMRpro Ambassador in reply to Nap1]

Bi-weekly can mean every 2 weeks - Merriam Webster says "Biweekly and bimonthly can mean the same thing because of the prefix bi-, which here can mean “occurring every two” or “occurring twice in.” Therefore, biweekly can be “twice in a week” or “every other week.” Bimonthly can also mean "every other week" if it's twice in a month, or it can mean “every other month.”"

TCZ injections can be used once a week or once every 2 weeks and the infusion is given 1x a month.

[Nap1 in reply to PMRpro]

Thank you PRO I did not realize that. I have always said bimonthly.

[PMRpro Ambassador in reply to Nap1]

As DadCue says - guaranteed to cause confusion. And it isn't even a opposite sides of the Atlantic thing!

[weatherman69]

VA here is just a clinic, we primarily use them for equipment issues. We use the Guam USNaval hospital. They are presently vaccinating workers and frontline enlisted and staff. Next will the catagory, Mac is in. Out in town, people are waiting 3 to 5 hours in line, in cars until they get close then standing in line. We are not going to put him in that situation. The home health agency wanted to come out and do it in the home, but I do not feel comfortable with that either. I am wanting to get it in the Naval Hospital, where he can be observed. As for me, I do not feel comfortable yet to take it. I have allergies, and allergic responses to many things. As a Nurse, I have seen way too much, and had way to much happen to me, I am waiting until I am sure for me. Meanwhile, Mac is pushing me hard to get it. I believe feeling comfortable, and each person, needs to make the decision for their self. I hope you get yours in a timely fashion.

[weatherman69]

PS. DadCue: Mac was in the Navy for 22years, first as a mechanic on flight deck with Fathoms, and he switched over to Meteorology. He is a Meteorologist/oceanographer. When he retired out of Navy, he went to work for National Weather Service/ Noaa after about 6 years here at the Joint Typhoon Warning Center. We are right in the middle of typhoon alley over here, and great place to be if that is your specialty. He has been retired from both for quite awhile now. We have lived on our sailboat for over 24 years, until he got 3 compression fractures.......he is walking with a walker well and now doing stationary bike and we are working our way back to our life aboard our sailboat, "Spindrift" we are water people and love it. Not sure at this point, how long we can keep it up, but our total heart is into it. Only the Lord knows. I hope this year brings us closer to going to the states to see our children, grands and greatgrands. We have 3 great grands born in the past year!! we keep in touch, but it is not the same, not to hug and see them. We are extremely, happy to have found this site, since the directions from docs have been go go down swiftly. Which has caused Mac much pain and impacted our lives to the point, we wanted to throw the towel in. So for the past 4 months, we have been using the slow 5 week taper and he will soon be 20mg. His ESR has been 10 to 16, and CRP under 5 for all since doing slow taper. Only problem, when he lost his closes friend. His CRP creeped up to 9 but no change in ESR. So now we really listen to his many symptoms when it is trying to flare, and is working great!! we are making progress and not yoyoing back and forth. Mac was diagnosed in 2016 and he got down to 10mg a couple of times quickly with really bad results of pushing him down way to fast, and then yo you back to 50 or 60 mgs.......we learned the hard way, so happy not doing that anymore. Hope your taper is good, and that Actemra working for you as well. Actemra, acts like speed on Mac for at least 2 days afterwards, and he sometimes gets mouth soreness with it. So we up the folic acid for a few days and he uses mouth wash that fixes it. So far that is his only problem with Actemra.