Third Vaccine

[Masha]

Who is going in for a third vaccine? My feelings are mixed. If the first two didn’t work why should a third. Or could it be that it would work. I messaged my rheumatologist for her feelings on this. How are all of you feeling about a third?

[John S]

Dr. Villa Forte advised me to not get a booster at this time.

[Dirty Don]

I've had first 2 shots, Mayo suggested I wait on the 3rd. Feel fine, no problems, will listen to docs.

[Mnjet]

I got 3rd dose of moderna yesterday per my rheumatologist recommendation. My spike protein was negative and I’m on prednisone, methotrexate, and rituxan. I feel a little punk today but worth it if I get some protection.

[drz]

I am still recovering from my flare from the vaccinations and am concerned that a booster would cause another flare of my GPA. I did get some protection from the vaccinations but how much and for how long is the question.

[J@$0N]

I am still recovering from my flare from the vaccinations and am concerned that a booster would cause another flare of my GPA. I did get some protection from the vaccinations but how much and for how long is the question.

I have a few reasons for not taking the vaccine in the first place and one of my fears is the reaction you had to it. I am extremely sensitive to most meds and am one of those that has the rare side effects from them. I don't recall the users name but I like the way they put it. In our condition, if our immune systems are like dynamite right now, would a vaccine of any kind be the blasting cap? Thoughts?

[Tahoerich]

I got the 1st and 2nd Moderva in April, my last Rituxan was December 2020. I’m on prednisone and methotrexate. Had antibodies test in July that came back negative. Doctor ok 3 rd shot In July. Will try antibiotics test end of September. With Coronavirus disease we have to keep trying. Be safe all.

[KathyTPA]

Have you read the article that came out in June regarding Rituxan and the vaccine. https://academic.oup.com/rheumap/article/5/2/rkab038/6290723?searchresult=1 - it is regarding effectiveness of vaccine when on rituxan. It is recommending to not have rituxan for 6 months after a vaccine. For this reason and when I had the 2nd shot of pfizer 3/19/21 and had GPA flare several days later, and a rituxan influsion on 4/9 and 5/28. I am finally feeling better and have my next infusion scheduled for 10/2/21. Since I am newly diagnosed, 12/2020, I am not taking the risk of getting sick again and need to have the infusion of rituxan to keep well. Frightened of covid, yet GPA scared me more. Keeping it one day at a time, and will adjust if necessary.
Thanks everyone for being here, I appreciate it very much.

[John S]

Dr. Villa Forte emailed me last night with advice to get third shot 1-2 months BEFORE next Rituximab treatment.
I just had an infusion on Tuesday so that means mid December at the earliest for me.

[shankxonline]

Completed my 2nd dose a month ago. Scheduled for Rtx end of Sep. I guess I will wait on if and when 3rd shot goes after that :)

[J@$0N]

Like I mentioned in another post, I decided not to take the shot. I tested positive on Wednesday of last week and have had an adventure. I will suggest that you talk to you Rheumatologist about the Antibody Therapy. I was able to get it the day after i tested positive and made a big difference. I had and have my concerns with it also, but prayerfully determined it was the right choice. Now I’m struggling with some other issues and wondering if the virus caused a flare.

[gilders]

I'll be taking the third jab when it's available to me.
I am on strong antirejection drugs (Immunosuppressants) and considering I had no reaction to the first 2 jabs and the fact that I'm at extremely high risk of severe problems from Covid, I believe a third jab is the best choice for me.

[vdub]

I'm getting the third as soon as they'll let me. Very low odds of having a reaction and it might help. Its kind of like getting your last rights -- doesn't hurt any no matter which way you believe, so what the hell, why not.

[novastorm]

I got my third shot on Monday. Sore arm and a minor headache reactions, but nothing else. Stopping MTX for 2 weeks.

[J@$0N]

Have you read the article that came out in June regarding Rituxan and the vaccine. https://academic.oup.com/rheumap/article/5/2/rkab038/6290723?searchresult=1 - it is regarding effectiveness of vaccine when on rituxan. It is recommending to not have rituxan for 6 months after a vaccine. For this reason and when I had the 2nd shot of pfizer 3/19/21 and had GPA flare several days later, and a rituxan influsion on 4/9 and 5/28. I am finally feeling better and have my next infusion scheduled for 10/2/21. Since I am newly diagnosed, 12/2020, I am not taking the risk of getting sick again and need to have the infusion of rituxan to keep well. Frightened of covid, yet GPA scared me more. Keeping it one day at a time, and will adjust if necessary.
Thanks everyone for being here, I appreciate it very much.

Look into the antibody treatment, Regeneron. It helped me quite a bit.

[Peter Marsham]

Had my second AZ dose start of July, looking at RTX November or December (still up in the air due to lockdowns and work). Had no effects apart from a sore arm. I’ve been acting as if I didn’t have a vaccine, with masks, distancing, hand washing, etc. If my doctor recommends a booster, I’ll be getting a booster. If not, I won’t, and just continue the current regimen.

[Masha]

yep, just got third one yesterday. My rheumatologist is ordering antibodies test prior to infusion. I am with you vdub I’ll get the last rites too!

[gunnyl]

My experience has been that prior to the vaccine get a T-B Cell screen. If you don't have T and B Cells you will not develop antibodies from the vaccine. I got both vaccines in February and April. Had a T-B Cell screen done two weeks after the last vaccine to see where I was being one month out from next RTX infusion. It came back with zero T cells and zero B cells. So I had an antibody test ordered (did this on my own due to hospital politics) and it came back with zero antibodies. My doctors still insist I should get a booster vaccine. I'm going to request a T-B cell screen before I get the booster because if there are no T or B cells then it's a moot point to get the booster. Don't take this as medical advise just my take on my own situation. I'm so tired of doctors telling me to get a vaccine without doing the due diligence on their part. The rationale I've been given is that even if it doesn't do anything for me; it won't hurt me. But on the same note, I don't want to live with a false sense of security.

[J@$0N]

Don't take this as medical advise just my take on my own situation. .

I'm like you only sharing my experience. But as I was discussing in another post, I decided not to "vax" for a few reasons. I tested positive for COVID a few weeks back and was given the antibody therapy that helped tremendously. I developed COVID in the timeframe between Rituxan infusions that would have been ideal if I were able to build antibodies, but happy that I was able to get the therapy. I was told that the antibodies would remain at least 90 days and would be able to do the same if I were to get COVID again. My wife was given a treatment and she felt better within a few days. Agree whole heartedly about the Drs pushing the "vax" without considering treatments as well. Don't get me wrong, I was and am skeptical a bit about the antibody therapy as well, but it is pushing something in that you don't have vs causing your body to react.

[Alysia]

I got the third pfizer vaccin about a month ago. Israel started first in the world with it and immune compromised patients were the first to be invited to get it.
I only had a bit of a sore arm. I didnt check the antibodies, my health service refused to give me this test. I can do it privately but it will cost me and I will have to go to a crowded place. I avoid those places. I behave like I am not vaccinated. No idea how much it protects me because my Igg and Igm are below the normal. I shop online, work online mostly or in a distance with mask, I am very careful. Anyway my true "vaccin" is God.

[Pete]

I had my rtx infusion today (500 mg). Dr Villa Forte gave me a choice: get a COVID booster no later than tomorrow or wait 5 months after infusion (and one month before my next one). I opted to wait. My wife and I are leaving on a trip later in the week. I don’t want to deal with side effects during the next few days. I had about 18 hours of flu like symptoms afer Pfizer dose #2.

I did get my flu shot today — fwiw.

[John S]

Those of us on Rituximab don’t seem to develop and keep antibodies. I’m wearing my mask, keeping distance and monitoring my health. If I contract COVID-19 I’ll do my damndest to get Regeneron quickly.

[shankxonline]

Like most of us - I was faced with choice of going for 3rd jab or move ahead with my scheduled Rtx IV. I had taken the 2nd Pfizer vac a month ago - being delayed due to my last Rtx. I leaned towards going ahead with Rtx and wait for 5 more months. Iff there were antibodies created by last 2 Pfizer jabs - great. I couldn't risk delaying my Rtx.

And I agree, I still consider myself as if I am unvaccinated and take precaution for myself and others around me.

[J@$0N]

Those of us on Rituximab don’t seem to develop and keep antibodies. I’m wearing my mask, keeping distance and monitoring my health. If I contract COVID-19 I’ll do my damndest to get Regeneron quickly.

I got Covid a little over a month ago and had the Regeneron. I think anyone like us on Rituxan would fair better to avoid more vax shots and go with Regeneron until there is more data. Slippery slope when the vax is causing intense flares.

[drz]

Those of us on Rituximab don’t seem to develop and keep antibodies. I’m wearing my mask, keeping distance and monitoring my health. If I contract COVID-19 I’ll do my damndest to get Regeneron quickly.

Good advice to maintain precautions. I got the same advice even though testing indicated I developed some antibodies but doctors said we don''t know if they are enough and the right kind to yield protection or how long they will last so still try be safe to avoid infection. I also developed a significant flare that required lots of treatment, RTX and high dosage of prednisone with a 25 pound weight gain and other bad side effects like popping a bicept muscle.

[J@$0N]

other bad side effects like popping a bicept muscle.

Is this a side effect from one of the treatments? I have had interesting and different types of muscular pains after treatment..

[KathyTPA]

Hello thanks for being here, I greatly appreciate it. Saturday 10/2, I have chosen to get my main medicine Rituxan Infusion in lieu of rushing to get the 3rd shot. My medicine is due now, and I do not want to get GPA sick again. For the 1st time in a year, I feel ok. (the 2nd shot got me very very GPA sick, it took 3.5 months to recover) I have found that we can check our antibodies and if none or nil, our doctors can help us get compassionate use of regeneron in lieu of the vaccine with is ineffective with RTX and our medical issues. I have my follow up with my Rheumy November 14 and will discuss with him then. I am safe at home mostly and when I go out I mask up and choose where I go very carefully. GLAD to hear that people are using regeneron, I think it may be the choice I need to make, 4 months after my infusion of RTX.

[drz]

Is this a side effect from one of the treatments? I have had interesting and different types of muscular pains after treatment..

Prednisone weakens your body to increase risk of torn skin and connective tissue. Tearing a tendon becomes a real risk and problem if it happens. I was warned about it when I started my follow up treatment after ICU. A deep massage could do damage.

Muscle and joint pain is common symptom of GPA and a frequent residual symptom that varies in intensity,

[J@$0N]

Good to know... i've been having some tendon/muscle issues after treatment and wasn't sure what it was. They injected 40mg of prednisone and didn't notices these issues till after treatment. Thank you!!!

[vdub]

I got my third about 2 wks ago. I feel crappy most of the time, so hard to tell if I had any flu-like symptoms. It felt pretty normal for me, i.e., muscle and joint aches -- not horrid, but just always present. When I take hydrocodone (only 5mg), I feel pretty decent, but about every 3 months or so, I decide to detox and then I go into the twitching, aches, sweats, etc for a couple days. But, its all worth it, as the hydrocodone allows me to feel normal for a few hrs a day.

But, I digress, yes, I got the 3rd shot. Who knows if it was the right thing to do. You can get a "credible" opinion to support whatever you believe. Sure wish there was a good source for news without the spin.

[J@$0N]

Were you in remission before the jab?

[vdub]

Yes, I've been in remission for quite some time now. My biggest issues now are fibromyalgia and the paralyzed diaphragm. The fibro is what makes me ache all the time, but its the paralyzed diaphragm (only the right side) that will cause problems if I get covid.

Wegner's took out my pituitary gland and then, after about 3 or 4 years, went into remission. Not having a pituitary causes a number of issues, but once the drugs are balanced out, its not a huge problem. You can read about it here.... granulomatous hypophysitis (https://clindiabetesendo.biomedcentral.com/articles/10.1186/s40842-016-0034-8) GRH is pretty rare with an incidence of 1 in 9 million per year. GH due to GPA is even more rare. I was diagnosed as #24.

[J@$0N]

Yes, I've been in remission for quite some time now. My biggest issues now are fibromyalgia and the paralyzed diaphragm. The fibro is what makes me ache all the time, but its the paralyzed diaphragm (only the right side) that will cause problems if I get covid.

Wegner's took out my pituitary gland and then, after about 3 or 4 years, went into remission. Not having a pituitary causes a number of issues, but once the drugs are balanced out, its not a huge problem. You can read about it here.... granulomatous hypophysitis (https://clindiabetesendo.biomedcentral.com/articles/10.1186/s40842-016-0034-8) GRH is pretty rare with an incidence of 1 in 9 million per year. GH due to GPA is even more rare. I was diagnosed as #24.
Wow.. before my diagnosis I had some issues with my eyes. My main issue was inflammation of my aorta. I was told the combo of that and wegs was rare, but definitely not as rare as yours. How long was it before you were diagnosed?

[vdub]

I had symptoms for about 2 years. At the time prior to dx, we were rv'ing around the country. Wegs hit my sinuses first and I had many appoints at various military bases around the country and they would just say "infection" and give me a handful of antibiotics. We were at the Whitesands Proving Grounds in March 2010 and I came down with a blinding headache, so went to the Army ER. It was just a clinic, so they put in an ambulance and sent me to Las Cruces. I was going in out of consciousness the entire time, but I do remember it was the roughest damn ride I had ever had. Army ambulances aren't exactly made for comfort.

I was at the Las Cruces hospital for about 24 hrs, but only remember bits and pieces. They put me on high doses of steroids, probably dex, and I was in pretty decent shape. They gave me a handful of pred and said "go home". It was 1,400 miles to home and I was pulling a 32' 5th-wheel. Normally, we only did about 300 miles a day when pulling the rv, but with the pred, we made the trip 2 and half days.

I did just fine for the first couple weeks at home and then the pred ran out and I ended up in the ER again. This time, they did an MRI and found the mass on my pituitary. I had brain surgery the next day and they removed the pituitary. I remained in ICU for the next week or so. The biopsy on the mass showed it was a granuloma and they dx'ed me with GPA.

One of the reasons we were at Whitesands was to see Light Warrior who was an active forum member at the time. She was a nurse at the hospital where I was eventually admitted. Unfortunately, Light Warrior died in 2013 from complications due to Wegs.

[NatriceRomeo]

Wow! That’s an amazing story.


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[gunnyl]

I had a conversation with a rheumatologist from my group at Walter Reed yesterday with regard to getting the booster vaccine. She basically told me that there are a lot of other sub-groups of T and B cells that affect antibody development besides the specific group that they look for and that there really is no data for them to go by with regard to effectiveness of the vaccines and booster vaccine as it pertains to GPA patients treated with Rituximab. She recommended that when I get past the upper respiratory infection I'm currently fighting and my body has time to recover that I should get the booster and then wait about a month to do my next infusion which as due next month. I will tell you that it was the best explanation from any doctor I've talked to about this subject and the most honest feedback I've received. So I will get the third jab as soon as I'm "healthy" enough to get it. Not exactly confident it will do anything for me but there's a chance.

[vdub]

Not exactly confident it will do anything for me but there's a chance.
That's the way I looked at it. Kind of like an atheist getting last rights from a priest -- can't hurt none. :-)

[gunnyl]

Interesting analogy


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[gunnyl]

Wow.. before my diagnosis I had some issues with my eyes. My main issue was inflammation of my aorta. I was told the combo of that and wegs was rare, but definitely not as rare as yours. How long was it before you were diagnosed?

I went blind from WG before I was diagnosed. A really good ophthalmologist was able to restore my sight. Unfortunately a really bad infectious disease doctor misdiagnosed me with West Nile Virus and it would be weeks before the accurate WG diagnosis by a Pulmonologist who biopsied my lungs. He had an interesting bedside manner or lack thereof and my wife referred to him as Dr House every time he came to visit me.

[drz]

From what I am reading today protection from vaccination starts to wane at 3 months and provides little protection after 6 months, hence the need for boosters.

[J@$0N]

From what I am reading today protection from vaccination starts to wane at 3 months and provides little protection after 6 months, hence the need for boosters.

I have not had the vaccine but contracted Delta in Augusta and was given the antibody therapy. I caught it right at one month before my Rituxan infusion. I decided to test for antibodies and was offered the test for those vaccinated to measure a level of antibodies. After two months I have much higher antibody levels than a workmate that had the vaccination. The lady that performed the test questioned if I had just gotten over it within the last week. I am NOT A DOCTOR.. but it seems like the antibody therapy allowed me to get over the virus without putting my own immune system through the task. My ANCA/PR3 numbers were much better than anticipated after having the virus and I believe it is due to not having to make my immune system work so hard. Please consider mentioning this to your doctor. TBH I doubt I will take another vaccination again of any kind and definitely not boosters.

[Susan B]

I had a conversation with a rheumatologist from my group at Walter Reed yesterday with regard to getting the booster vaccine. She basically told me that there are a lot of other sub-groups of T and B cells that affect antibody development besides the specific group that they look for and that there really is no data for them to go by with regard to effectiveness of the vaccines and booster vaccine as it pertains to GPA patients treated with Rituximab. She recommended that when I get past the upper respiratory infection I'm currently fighting and my body has time to recover that I should get the booster and then wait about a month to do my next infusion which as due next month. I will tell you that it was the best explanation from any doctor I've talked to about this subject and the most honest feedback I've received. So I will get the third jab as soon as I'm "healthy" enough to get it. Not exactly confident it will do anything for me but there's a chance.

That’s precisely what I did based on my rheumatologist’s recommendations. Had a delay in the plan because of a cold, but then I got my COVID booster followed by flu vaccine 2 weeks later. This will push back Rituxan, but my rheumatologist doesn’t get excited about waiting a few more weeks as long as I am in remission.

[chrisTIn@]

I 've had two Pfizer-shots, the last one in June.
Also I took the flu-shot last week.

After the flu shot I suffered from bloody nose, stuffed feeling in my head and fever.

Now with the new coronavirus variant 'Omicron' I 'm not sure about the so-called 'third vaccination' or 'boostershot'.
I'm waiting for the latest scientific reports...

[vdub]

CHRIS! I'm always glad to hear from you. You may not know it, but we have a special connection. If I go way back to the very first message I received on this forum, it was from you.

Sorry to hear you had some difficulty. I've had two pfizer, plus a pfizer booster, and a flu shot with no problems that I know of, but its sometimes difficult to say when you feel crappy most of the time.

For the past few days I've been having to put up with a sore throat, aching (but I always ache), coughing with lots of spitum, and a headache. I figured it was just a bad cold, but got a covid test anyway. I was right; the test was negative and the doctor said I just had to let the cold run its course. I think I've turned the corner on it as I'm feeling much better today.

I'm getting pretty tired of all this covid stuff. Omicron? Already? How many variants are we going to get? Is this thing just going to keep hammering away until we give up and let it take the weakest in the herd? I'm not so worried about me or others my age, but I do wish our children and grandchildren could experience the same great life I did.

[Randy]

Got my 4th dose of Moderna on April 21, (third dose on October 2021). My only side effect is a sore arm and a head ache the next day. The only medication i take is 50 mg of Azathioprine. Have not had covid so i'm not sure how it would effect me. I have friends who have had 3 shots and got covid. They said it was like a bad cold. They are in their 70,s but healthy people. The vaccine seems of effect different people differently but i think it is worth the risk.