Vasculitis and COVID Vaccine: Hi everybody, we... - Vasculitis UK

Vasculitis UK

6,767 members5,909 posts

Vasculitis and COVID Vaccine

Investigator1
Investigator1

Hi everybody, we are now further down the road regarding vaccinations from my last post on the subject, however I am still having difficulty finding information regarding if those of us on immune suppressants can have a COVID jab. I say this because I have heard Doctors saying if you are offered the jab take it, but my specialist was doubtful last time I saw her. I find it all a bit frustrating watching idiots flaunting the COVID rules but can’t seem to get direction on my own protection from them. I have GPA currently on low dose steroids and Rituximab.

29 Replies

Hello,I'm on Preds and Mycophenolate, and when I recently had a phone consultation with my rheumatologist, I asked her about this, and whether I would need to stop taking the Myco for a while. She said that to make a difference to the immunosuppression would involve stopping the Myco for a month before and a month after the jab. This would possibly upset my inflammation etc. so not a good idea. She said I would be fine as I am.

I know I'm on different meds, but hope this helps.

May7
May7 in reply to May7

ps I googled this and it was suggested that if your infusion was due around vaccination time, then to ask to delay it until after the vaccine. I haven't so far seen anything about immunosuppressed people advised not to get the vaccine, and they are included in the high risk groups prioritised for it.

Investigator1
Investigator1 in reply to May7

Thanks May7, I had my Rituximab infusion in mid November so due again April / May ish so the timing good work for me! Thanks May7 as always really good advice from a nice person. Take care. Nick

I have been advised to wait six months before Inhave my needle as I am about to have the first Rituximab for Vasculitis on Tuesday all being well!

May7
May7 in reply to Investigator1

Thank you for your kind words. Have you seen zoe69's latest post with up to date info on vaccination for immune suppressed people, and specific advice regarding rituximab?

Investigator1
Investigator1 in reply to May7

No can’t find it!

May7
May7 in reply to Investigator1

I had an email alert that there was a new post by zoe69, and followed it through.

As you couldn't find it I tried searching for zoe69 and that produced no results!

I don't know how to show links on here, so I tried searching for the title of the article and that worked. Try the following:

Covid-19 vaccinations

Good luck!

May7
May7 in reply to May7

Sorry, should be

Covid-19 vaccinations and vasculitis.

It leads you through a long trail of links.

Investigator1
Investigator1 in reply to May7

Got it!

Kenw28
Kenw28 in reply to May7

Hi,Thanks for the information

I'm on the same meds as you,2000 myco, and 3mg (reducing to 2 next week prednisolone.)and have a telephone appointment with rheumatology next week. Was going to ask the same questions.

If I am told anything different will let you know

beeryone
beeryone in reply to May7

When do you have your bloods done

May7
May7 in reply to beeryone

I have them taken at my GP surgery. And since Covid they have provided a special Shielding area, with a separate entrance.

May7
May7 in reply to May7

Sorry, I misread your question in a hurry. You asked When, so up intil recently it was once a month, but now it's once every two months, due at the end of this month.

Ditto my Uk specialist says it’s ok but I’m working in Oman and they will not give it to me as I also have GPA and on methotrexate and steroids.

zoe69
zoe69Administrator

According to the BSR guidelines you should have the vaccine 4 weeks before having Rituximab. I have heard that some doctors have advised 6-8 weeks.

I spoke to my Rheumatologist last Thursday to ask whether i should have the Oxford vaccine after some Professor stated on television that it was a "live vaccine". The answer was that the Oxford vaccine has been modified and is NOT a live vaccine and that I should definatly have the vaccine and continue to take the Mycophenolate. The Cardiff university hospital is currently lobbying the government because their tier system places people with vasculitis that has even had a kidney transplant into tier 6 when the hospital says they want transplant patients put into tier 2 and treated as urgent cases and to have the vaccine. The doctor I spoke with is a transplant surgeon and he advised me to continue with my meds and have the vaccine we are more at risk from this virus than the vaccine.

John_Mills
John_MillsAdministrator in reply to tisme2

This professor was certainly out of order saying what he did on the tv , he caused our helpline at VUK to go into overdrive!!

I have read about the antibody treatment (drawn from the people who have had Covid) for people like us some months ago and there is still campaign (on the radio) asking for blood donation for antibody. But I have not read anything further. Clearly it must be very difficult to gather enough...meanwhile I have decided to get the vaccine when offered. I cannot live indoor for the rest of my life when the society functions again. .. as the virus is not going anywhere.

My immunologist (at UCLA - I'm in California) said to get the vaccine but do bloodwork before and after to test its effectiveness. My son and I both have immune disorders (CVID) and he is on steroids and Rituximab. We both do monthly subcutaneous immunoglobulin infusions at home. It's like when you are first diagnosed with something like CVID - they give you a vaccine and then later they test for titers to see if your body built up a response to it. I think it is a smart idea because we will be able to gauge the extent to which our immune systems were able to build up a response to the vaccine.

From what I understand, he says that we are not necessarily at more risk of catching COVID, but if we do catch it, we are at risk for more complications.

Eventually there should be more COVID antibodies in the immunoglobulin that we infuse monthly - it is a human product.

I do not know where we are in terms of priority for the vaccine. I am a teacher (working from home) and teachers are higher up the list than some others. I think it will help to have your doctors be from a university system / research center.

Paprika60
Paprika60 in reply to Dancerina

Thank you for sharing this info. Very interesting! I will discuss this aspect with my doctor here in London too. In UK all immune compromised people are on the same level as the age group of 70s, level 4. This group is expecting to have it completed by the middle of Feb. Well, that's the government's aim. I have read some interesting article on DNA gene therapy done by the Berkley Univ. team and that they have actually completely cured one auto immune patient. Have you heard of it by any chance?

Dancerina
Dancerina in reply to Paprika60

The doctor did genome testing on me and my son as part of his research, but nothing conclusive came of it.

Our guidelines for who gets the vaccine change. In Los Angeles county, currently 1A is health care workers and long-term care residents, 1B tier 1 is 75 and older, workers in education and child care, emergency services, food and agriculture; 1B tier 2 is ages 65-74, workers in transportation and logistics, critical manufacturing, etc. and the incarcerated and the homeless; 1C is 50-64 years old, people 16-49 with underlying health conditions, and employees in other sectors (water, defense, financial services, energy, government, and other.) Phase 2 is persons 16-49.

So... as a teacher, I would get the vaccine earlier than as an immunocompromised person... maybe in February - late March? A prisoner or a homeless person would get vaccinated before my immunocompromised son would get the jab - he might be up March - May along with my husband.

I am certain it will be delayed.

My students (who are often asymptomatic carriers) are not included in this scheme at all.

Paprika60
Paprika60 in reply to Dancerina

I watched some news report on California's present condition and it is very scary. I am keeping indoor except for the daily walk of one hour and I don't see anybody. My husband stays with the same regime to keep me safe. I think that is the only way until the vaccine comes. We just have to be very patient believing that everybody is doing their best. Sending you all my best wishes.

The problem as I see it is that the vaccine may not take due to the immunosuppression. This is what the Joint Committee of safety in vaccines and immunisation states. The following publication from that committee

states that the two groups who should not be vaccinated are pregnant women and children. It also says it will be evaluating the benefit of protectiing immuno-compromised individuals by the vaccination of their household which they do not recommend at present but are awaiting outcomes from the vaccination programme. This is because, although vaccinated , the required antibody response has not been achieved. That is how I interpret it. Nowhere that I can see does it state that they should not have the vaccine. In view of the fact that COVID is treated with immuno suppressants it might be argued that immunosuppresion is protective against COVID itself.

assets.publishing.service.g...

Dancerina
Dancerina in reply to Churg

That is why my doctor wants us to do the bloodwork before and afterward - to measure whether our immune systems were strong enough to build up a response to it.

Dancerina
Dancerina in reply to Dancerina

He says that the immune disorders create a DISORDERED immune system. I asked why sometimes it is too weak to fight things off while other times it is strong enough to attack healthy parts of our body that it should not be attacking. It fights off the wrong things while not fighting off the right things.

gilders
gilders in reply to Churg

I have a friend in Israel and the household (as well as the immune compromised individual) all get the vaccine.

My understanding is that it is fine to have the covid inoculation .But you should wait until you are 12 weeks out at least from your last Rituxamab infusion.Also you should leave 12 weeks before having any further rituxamab.

John_Mills
John_MillsAdministrator

Your questions will be answered if you follow this link and scroll down the page...if you are still concerned you need to have a serious conversation with your own consultant. vasculitis.org.uk/news/covi...

Hi iv got gpa having having jab Saturday but have to delay rituxamib till June so iv had both doses of the jab as you choose to wait 4 weeks aft infusion n have jab the jab it may not be a effective

You may also like...