Dr. Appt. - Vaccine did not work (no antibodies)

[Meredith]

Went to the Doctor last week told if you are on Rituximab good chance the vaccine did not produce the (antibodies). they took multiple blood samples and I got the results yesterday. My doctor is in a study about this - 85% of people on this drug the vaccine did not work. Not sure what the next step is. Wait and see - I guess the mask will never come off.

[Dirty Don]

There is a lesser chance of producing the amount of antibodies needed. According to Mayo docs, the estimate of effectiveness is about 80-85% compared to a normal situation. I've had both shots, no reactions or symptoms and no Covid...and I just had a round of RTX after the C shots. Be wary, but get all the info needed for you. Best to you.

[drz]

No doctor has been willing to test me for antibodies since they say there is no point. If they aren't present, then what since there is no next step being recommended at this time. Even if they are present they have no idea how long they will last or how much protection they would provide. They just recommend I continue to self-quarantine.

I got my RTX after the vaccination. Doctors believe the Covid-19 vaccine pushed my smoldering GPA into an active flare.

[shankxonline]

They just recommend I continue to self-quarantine. I got my RTX after the vaccination. Doctors believe the Covid-19 pushed my smoldering GPA into an active flare. drz - from your experience, are you saying that getting a C-19 vac actually triggered a flare? I am contemplating getting C-19 between 2 RTX and wondering if its worth taking or not...

[richard052018]

This is the official guidance (from the American College of Rheumatology) that all of the doctors are going with. Dr. Villa Forte at the Cleveland Clinic as well as my local rheumatologist both provided, verbatim, the same recommendation:

"Assuming that patient's COVID-19 risk is low or is able to be mitigated by preventive health measures (e.g., self-isolation), schedule vaccination so that the vaccine series is initiated approximately 4weeks prior to next scheduled rituximab cycle; after vaccination, delay RTX 2-4 weeks after final vaccine dose, if disease activity allows"

Last Updated 4/28/2021: https://www.rheumatology.org/Portals/0/Files/COVID-19-Vaccine-Clinical-Guidance-Rheumatic-Diseases-Summary.pdf

The Rabbit Hole I used to find this was on the Vasculitis Foundation website: https://www.vasculitisfoundation.org/coronavirus-covid-19/

I had Pfizer #2 on Sat, June 5th, I was in terrible shape June 6th (101 degree fever: I haven't had a fever since before being diagnosed). Fever broke late that evening. From what I've been told, this is a good sign the spike proteins in the vaccine did their job. Will my next RTX in early July wipe it out? Probably, but this isn't going anywhere so I'm taking protective measures like losing weight, physically distancing, meditating, and praying.

Good Luck to all.

[drz]

@drz (https://www.wegeners-granulomatosis.com/forum/member.php?u=939) - from your experience, are you saying that getting a C-19 vac actually triggered a flare? I am contemplating getting C-19 between 2 RTX and wondering if its worth taking or not...

My doctors believe it did. I was smoldering before though so it didn't take much to push me into a flare. I would still do it again even though I am uncertain the vaccination gave me much protection given my suppressed immune system.

Local doctors also noted some people with other autoimmune disorders seemed to have a flare after their vaccination for Covid. But this was probably a small number.

[gilders]

I've not been on RTX since before my kidney transplant just over 2 years ago, but I am on daily Adoport (Tacrolimus) and Myfortic (Mycophenolate).
I received my antibody result today and did not produce any response (IgG and IgM).

[Masha]

Bottom line first. My vaccine did not work. The results of my antibody test just came back- negative. My doctors followed the CC protocol. Waited 6 months from Rituxin for first vaccine, after second vaccine waited 6 weeks for next Rituxin treatment. As much as protocol was followed, no antibodies. Drz, like you my doctors really didn’t want me to have this test. I guess some patients can go a little bananas with the results. I promised my internist that I would not. It would have been nice to think I had some protection, but between these results and my B cells being non existent, I was told to social distance and continue to wear a mask. I have really only been going for car rides, walks, but not going in to restaurants. As per my doctors orders I agree to continue as if I had no vaccine. People in NC and SC are not masked. Since I used to wear one during flu season, I will just continue. The only problem is that so many people are anti masks, I will be sensitive if someone thinks I am still wearing it only because of covid. But I found a solution, a mask that says AUTOIMMUNE. I will still need to wear a regular one under it. My husband who is 78 also will continue masking, he has a button that says I LOVE SOMEONE WHO IS AUTOIMMUNE. Our neighbors are having a big party with many people who may or may not be vaccinated, doctor said NO! She said she and her husband, a surgeon are passing on a party for the same reason. I know most people are safe, but there is a very small part of the population who is not, and I am part of that small group. I wish that politics and medicine had not got intermingled. For me the best path I can follow is to ignore what I hear on TV and follow doctors orders. Hope and prayers this evil virus will soon be a bad memory.

[Meredith]

Ok -next steps. No Rituxan for 2 months (which puts me 8 months out from the last two). Try again with vaccine in August, only pfizer or moderna. I just pray I don't have a flare!

[NatriceRomeo]

Bottom line first. My vaccine did not work. The results of my antibody test just came back- negative. My doctors followed the CC protocol. Waited 6 months from Rituxin for first vaccine, after second vaccine waited 6 weeks for next Rituxin treatment. As much as protocol was followed, no antibodies. Drz, like you my doctors really didn’t want me to have this test. I guess some patients can go a little bananas with the results. I promised my internist that I would not. It would have been nice to think I had some protection, but between these results and my B cells being non existent, I was told to social distance and continue to wear a mask. I have really only been going for car rides, walks, but not going in to restaurants. As per my doctors orders I agree to continue as if I had no vaccine. People in NC and SC are not masked. Since I used to wear one during flu season, I will just continue. The only problem is that so many people are anti masks, I will be sensitive if someone thinks I am still wearing it only because of covid. But I found a solution, a mask that says AUTOIMMUNE. I will still need to wear a regular one under it. My husband who is 78 also will continue masking, he has a button that says I LOVE SOMEONE WHO IS AUTOIMMUNE. Our neighbors are having a big party with many people who may or may not be vaccinated, doctor said NO! She said she and her husband, a surgeon are passing on a party for the same reason. I know most people are safe, but there is a very small part of the population who is not, and I am part of that small group. I wish that politics and medicine had not got intermingled. For me the best path I can follow is to ignore what I hear on TV and follow doctors orders. Hope and prayers this evil virus will soon be a bad memory.

I am sorry the vaccine did not work. I was supposed to receive Rituxin last October but had cancelled the infusion because my daughter got placed in quarantine. I ended up getting COVId in November. My rheumatologist wanted me to delay the rituxin until I got vaccinated. It had been 10 months since I had an infusion. I finally had it in March. My rheumatologist refuses to test me for antibodies. I am hoping because it was almost a year it would have worked.
Natty


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[drz]

My lab results yesterday confirmed I did get some Antibodies after my Covid-19 vaccinations even though I had RTX a few weeks later since the vaccine pushed me into a GPA flare. I was smoldering though already so it didn't take much. Now I am trying to recover from the flare and the treatment.

[Tacs]

I have been on mycophenolate for a while now, 1000mg / day, and had two shots of the Pfizer.
I had my antibodies tested with the Roche semi-quantitative RBD antibodies test, and it came back as 183.
From what I can gather that is about 10 times lower than would be expected in someone who is not immunocompromised.

[Tacs]

Has anyone looked into getting a third Covid vaccine dose? I've read in newspaper articles of people getting them, but not sure exactly how they are able to.

[Tacs]

I was able to get an antibody test through Labcorp directly. I think they have an "in-house" doctor who writes the script. You can set it up directly on their website. I thought it was useful for me. As immunized people, many of us are probably generally at higher risk of a worse outcome. However, my thought was that if my antibody levels were normal for a non-immunocompromised person, then what reason would I have to think that the vaccine was less effective for me? While I would still be more cautious than most since I believe I would still be at higher risk of a bad outcome compared to non-immunocompromised recipients, at least I felt that I could check that box and engage with the world a bit more. In the end, my antibody results came back pretty low, I am more focused on being cautious and looking for trials that would enable me to get a third dose.

[Tacs]

Bottom line first. My vaccine did not work. The results of my antibody test just came back- negative. My doctors followed the CC protocol. Waited 6 months from Rituxin for first vaccine, after second vaccine waited 6 weeks for next Rituxin treatment. As much as protocol was followed, no antibodies. Drz, like you my doctors really didn’t want me to have this test. I guess some patients can go a little bananas with the results. I promised my internist that I would not. It would have been nice to think I had some protection, but between these results and my B cells being non existent, I was told to social distance and continue to wear a mask. I have really only been going for car rides, walks, but not going in to restaurants. As per my doctors orders I agree to continue as if I had no vaccine. People in NC and SC are not masked. Since I used to wear one during flu season, I will just continue. The only problem is that so many people are anti masks, I will be sensitive if someone thinks I am still wearing it only because of covid. But I found a solution, a mask that says AUTOIMMUNE. I will still need to wear a regular one under it. My husband who is 78 also will continue masking, he has a button that says I LOVE SOMEONE WHO IS AUTOIMMUNE. Our neighbors are having a big party with many people who may or may not be vaccinated, doctor said NO! She said she and her husband, a surgeon are passing on a party for the same reason. I know most people are safe, but there is a very small part of the population who is not, and I am part of that small group. I wish that politics and medicine had not got intermingled. For me the best path I can follow is to ignore what I hear on TV and follow doctors orders. Hope and prayers this evil virus will soon be a bad memory.

Yeah, It's too bad mask-wearing became a political issue. It's such as small thing to ask. People will risk their lives to save others, but yet some are not willing to simply wear a mask. It's too bad that you did not produce antibodies. That is frustrating, but hopefully we will have boosters available soon and they will work on you. There have been some promising results.

[JeanMarie]

I joined a clinical trial sponsored by the Leukemia & Lymphoma Society. I was eligible because I also have chronic lymphocytic leukemia.(also an auto immune disease) They did give us the results of the 1st part of the trial & I have no antibodies. We were told to continue to wear masks & social distance.The trial continues & hopefully, at some point, they will be able to tell us what not having antibodies means & what the solution is. Right now, they are not recommending a third shot. Outside of a clinical trial, they do not recommend testing because they don't even know what not having antibodies means & they don't know what to do about it.

[nancytuesday]

I have had three negative serum COVID tests after being vaccinated in March/April. I did a T-Detect test and that did show a positive response - but you have to pay for the test yourself (is not covered by insurance - at least for me). I am thinking about getting another vaccination - but I have a call in to my Dr to confirm. Thought you might be intersted in this article: https://www.nytimes.com/2021/07/04/health/coronavirus-immunity-vaccines.html

I just wish there was more research for folks like us. It always feels like I am running a experiment with little guidance.

[Masha]

Thank you Nancy, I really appreciate the information. After reading your information, I ordered the t test. My doctors do not want their patients to have antibody test. Like I stated previously I had it and like you that test did come back negative. Then my rheumatologist and ent said I have T cells. No test was offered. Glad you told about it. Information is important. After reading The NY Times article, I don’t know if I would go for 3rd or 4th vaccine. Food for thought. Again, thanks. Also, thanks to Andrew for providing this wonderful site.

Masha

[annekat]

Thanks to everyone for looking into this. I am full of tension about this because no one can tell us whether we really may or may not have antibodies, the test is discouraged, and there is doubt as to whether a result showing no antibodies has truly revealed what is going on in our immune systems. I can't read the NYT article because they want me to subscribe and I don't want to. Sometimes they make important info available without a subscription, and this seems like it should be one of those times.

Once again we find ourselves having it never stick when we tell people around us about our autoimmune condition. I don't mean family members or close friends, but the otherwise perfectly astute and well-informed people I associate with in various ways. I was at a meeting where everyone, including me, had been vaccinated; at least it was assumed. This was the first in person meeting after many months of virtual ones. No one acted like there was any need to still be careful, wear masks, social distance, etc. When I mentioned it someone said, "well, you've been vaccinated, haven't you?" To which I replied "yes" but I was too pushed out of shape to say anything else, and the meeting had started. This person was one to whom I'm SURE, among many, I had mentioned my health issue in the past as to why I was not attending the farmers market where I've sold pottery for many years. They act like they understand but I swear, it goes in one ear and out the other, and they immediately forget. I am not part of their elite group of fully vaccinated people who have normal immune systems and theoretically are loaded with antibodies against Covid. So I should theoretically be masking up at those meetings, if sitting that close to people. I didn't, because I felt (perhaps wrongly) I would be questioned. I should have done it to make a point. I'm not really worried that I picked up Covid there. But now I plan not to attend any more in person meetings, to make a point, or else hope i will have the gumption to wear a mask and explain why.

I will see my WG doc in a couple of months and discuss this with him. But I don't think he'll be very forthcoming with information or support, because I doubt he knows any more than anyone about whether or not I might actually have antibodies. Maybe I will ask him about getting an antibody test, and if he has any answer on that, and can provide reasons, I'll be pleasantly surprised. He will probably be glad I got vaxxed, but may say it is up to me whether to mask up or not. Or maybe he'll say I should wear one. BTW, I am on methotrexate and a small amount of prednisone and do not take RTX. I had all my meds upped temporarily due to a flare a few weeks before wanting to get the shots, and ended up following a mixture of 3 different doctors' advice on how long I should wait, how much I should be tapered back down, etc. My WG doc was the one who said I should just get the shots and not worry about what meds I was taking. He isn't the one whose advice I followed. Thanks for letting me unload.

PS, my profile pic is way outdated, that was about 10 years ago. Been planning to do something about that.

[Peter Marsham]

Good to at least see you starting to get back out. As far as the masks and vaccines are concerned, I’m with you %100. I’ve had both shots of AZ, didn’t have any sort of physical reaction, so I’m acting as if they didn’t work - I don’t really want to know one way or another. People I do associate with have the same deafness, and I’m always afraid I’ll insult someone when they stick their hand out to shake.
in Australia, we’ve had some city clusters of Delta spring up in the last few weeks, so masking is mandated, which lets me blend in a bit more, but I’ll always remember the rando anti-masker from a couple months ago who actually grabbed mine and tried to pull it off while calling me a sheep. Should really have made a complaint, but I didn’t.
As for yourself, if it means you can get back out again, just wear the mask and tell people why if they ask. And don’t take any crap.

[Masha]

Quick solution. I went to Etsy and bought a cheap cloth mask that says IMMUNE COMPROMISED. You still have to wear a safe mask under it. Bought my husband a pin that says I LOVE A PERSON WITH AUTOIMMUNE DISEASE. If anyone questions you be ready with handouts about not Wegener’s but Granulomatosis. I have found the name not only shuts them up but intimidates them. If confronted with mile long information, most people will run the other way.
I just heard that a patient was coming out of a medical center for treating breast cancer and was attacked for her mask. What on earth has happened to our world.
I am having someone come to my home on Monday to test to see if I have any T cells. Thanks to this site I got the info. Even though I am vaccinated, since it didn’t work, my doctors said to live as though I am not. Covid deaths in NC and SC are barely there. But I do know that when they say that a tiny per cent is still vulnerable they are talking about me.

[Tahoerich]

Good morning to all. I got a 3rd shot. My last Rituxan was December 2020. I’m on 4mg prednisone a day. 12.5 Methotrexate one dose a week. I got may first Mod shot end of March. Second Mod shot end of April. Had test for antibodies July. It was negative. I then got a 3rd Mod shot. Bigger response to shot. Arm really gutted for 2 days. One day lots of muscle pains. 3rd after shot feel normal. I’ll try to get antibodies test end of Sept. I’m glad people are to where masks in doors again. Be safe all.

[Mnjet]

Good morning to all. I got a 3rd shot. My last Rituxan was December 2020. I’m on 4mg prednisone a day. 12.5 Methotrexate one dose a week. I got may first Mod shot end of March. Second Mod shot end of April. Had test for antibodies July. It was negative. I then got a 3rd Mod shot. Bigger response to shot. Arm really gutted for 2 days. One day lots of muscle pains. 3rd after shot feel normal. I’ll try to get antibodies test end of Sept. I’m glad people are to where masks in doors again. Be safe all.

Your story is very similar to mine. My rheumatologist is looking into getting a 3rd shot for me. How did you get one?

[Tahoerich]

Hi not trying to do anything illegally. 1st and 2nd shots where threw the local government. My D said go ahead with a 3rd shot. You can try any store that’s doing coronavirus shots.

[novastorm]

It seems that most in this forum are on Rituxan. I am fortunate enough to be on just maintenance Methotrexate. Has anyone who is just on methotrexate and had the 2 dose Covid shot also had Covid antibody testing after vaccination? And if so, what were the results, and did you temporarily discontinue methotrexate (for 1-2 weeks) before and /or after the vaccine shots?

[J@$0N]

Do you know if the study is published? I have multiple reasons I do not plan to take the shot yet, but would like to see the data. One fear is the exacerbation of the condition the other is no antibodies. I'm definitely not trying to diminish CVD, but i fear the shot with this condition more than the virus. I am so sensitive to medications and there isn't a lot data for this and our condition. Thank you for posting this... I try to make the best decisions based on what information is available.

Thank you

Jason

[little sister]

I got vaccine plus 2 boosters. I had a breakthrough covid case between the 2 boosters. After the second booster I had a dramatic sudden relapse with kidney failure but looking back I think there were early symptoms before the last booster. Since I got out of the hospital I've been tested before beginning rtx. No antibodies to anything EXCEPT COVID. I got revaccinated for pneumonia, etc. and still no antibodies. But yes for coronavirus. Although that is the old strain probably. Everything is so weird now isn't it? I guess I just have to laugh (while I'm getting my subcutaneous injections of antibody therapy).

[Meredith]

After 3 Covid vaccines, 2 Phitzer and 1 Moderna (all showed no antibodies in my body). Caught Covid in January (in the hospital for a week). I have now been off my Rituxan treatment for 2 years. My doctor wanted me to get the evusheld treatment to get the antibodies after covid. It worked! Gave me antibodies. I just went again (you have to go every 6 months and get 2 shots in the hip.) No issues with this at all, could not tell I had been given anything. See my specialist tomorrow - hopefully everything OK but he noticed a couple of months ago inflation level is rising slightly.

[little sister]

I forgot to say that I also received gammaglobulin therapy when I had Covid.
Is the evushield to provide antibodies to everything or just covid? I will be getting Xembify.

[J@$0N]

I never got the “vax” and ended up getting Covid in late August of 2021.. they gave me the monoclonal antibodies and I pulled through well. September of 2021 I had my last RTXN infusion and have been in remission so far since. I’ve had a couple colds and been exposed to CVD a few times since.. I did, however get tested for antibodies in December 2021 and had loads of antibodies.. I feel blessed and fortunate.. keep up your vitamin d and zinc levels.

[gunnyl]

I like Meredith never generated antibodies from the vaccines. I got Evusheld in June during my RTX infusion and can say with certainty that it worked for me. I had close proximity with my son the two days before he tested positive and presented with symptoms from covid and I never got it. Barring legitimate health reasons against it I highly recommend it for RTX patients.


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[John S]

I've had Evusheld in March and again in September., shortly after RTX infusions. I am getting my booster and flu shots generally three months later. That has kept me relatively protected.