Reactions to Covid-19 vaccinations

[drz]

I suspect most of us have received our vaccinations for Covid-19. I know some people had some symptoms and discomfort after the vaccinations, especially after the second shot. But most people seem to have little or no discomfort from the vaccinations. I got the Moderna vaccine and did have some allergic reaction to both shots but the second one was more serious so I went to the ER and got some treatment but felt OK the next day.

Yesterday or two months later than my second shot I went to the Walk In clinic with some new symptoms that puzzled me. I had had two bad nose bleeds recently which usually is an indication i need to increase my prednisone meds to handle a fluctuations in my residual symptoms. My rheumatologist has suggested I increase prednsione from 6 mg back up to 10 for a couple weeks. I did this several days ago.

I used to be at 5 for several years but not able to get below 6 in past year. I always get an increase when I go to the hospital for inpatient treatment for pneumonia or other infection.

The clinician ruled out flu since there have been some cases in our area recently which might have explained my symptoms of serious fatigue, muscle aches all over and loss of appetite. I also tested negative for Covid-19. My lungs seemed clear so no indication of pneumonia. No fever or chills or other symptoms.

Her theory was the vaccination might have triggered a flare or relapse in my GPA or another new autoimmune disorder since they have seen other cases where patients with autoimmune disorders relapse or flare after their second vaccinations since it does activate the immune system.

Has anyone else had any similar experience?

[Pete]

I had a sore arm at the injection site for about 24 hours after both shots. About 18 hours after the second shot, I had flu-like symptoms that lasted for about 18 hours. I had chills, muscle aches, fever, and fatigue. I got the Pfizer vaccine. I’m almost two months out from the second vaccine dose and a month out from 500 mg of rtx. So far, so good.

[GPA4Me]

I also had the Pfizer vaccine. Sore arm for several days after, and minor flu like symptoms after the second shot. I had a slight concern of my immune system going into overdrive and causing a flare but so far, so good.

[Alysia]

Sorry for the flare, drz. Maybe it is the result of reducing the pred to 6mg ? I flared when I tried to reduce the pred from 7mg to 6.5mg every other day, after only 4 days.

I got the pfizer vaccin on 31.12.20 and the second shot 21 days later. My wg is smoldering all the time so I dont think it is related to the vaccins.

How are you doing with the 10mg pred ?

[drz]

I suspect most of us have received our vaccinations for Covid-19. I know some people had some symptoms and discomfort after the vaccinations, especially after the second shot. But most people seem to have little or no discomfort from the vaccinations. I got the Moderna vaccine and did have some allergic reaction to both shots but the second one was more serious so I went to the ER and got some treatment but felt OK the next day.

Yesterday or two months later than my second shot I went to the Walk In clinic with some new symptoms that puzzled me. I had had two bad nose bleeds recently which usually is an indication i need to increase my prednisone meds to handle a fluctuations in my residual symptoms. My rheumatologist has suggested I increase prednsione from 6 mg back up to 10 for a couple weeks. I did this several days ago.

I used to be at 5 for several years but not able to get below 6 in past year. I always get an increase when I go to the hospital for inpatient treatment for pneumonia or other infection.

The clinician ruled out flu since there have been some cases in our area recently which might have explained my symptoms of serious fatigue, muscle aches all over and loss of appetite. I also tested negative for Covid-19. My lungs seemed clear so no indication of pneumonia. No fever or chills or other symptoms.

Her theory was the vaccination might have triggered a flare or relapse in my GPA or another new autoimmune disorder since they have seen other cases where patients with autoimmune disorders relapse or flare after their second vaccinations since it does activate the immune system.

Has anyone else had any similar experience?

It took 10 days to get it confirmed but my rheumatologist decided I'm having a serious flare and has scheduled me for rituximab treatment on Friday. He believes that all of my current symptoms as listed above including the shortness of breath and blood he sinus rinses are result of a flare in my GPA. I have been in a drug induced remission for 10 years so was not familiar with how a serious flare would feel. My local internist did not recognize it either and prescribed an antibiotic thinking I must have pneumonia or some similar infection that was causing my symptoms. In the meantime they have increased my prednisone meds from 10 to 60. This unfortunately wrecks Havoc with my blood glucose levels and diabetes but they told me to try manage at the best I can with my insulin pump and go to the ER room for help if I get too high and out-of-control.

I'm impressed that it was a physician's assistant who speculated that my symptoms might relate to a flare caused by the Covid 19 vaccinations. Unfortunately my local internist did not share this insight but then I do not expect him to be an expert on GPA since I am probably his only patient with this diagnosis. My rheumatologist who has followed my treatment for over 10 years was able to sort it out with more lab work and history over the past three weeks.

[crowneagle]

I suspect most of us have received our vaccinations for Covid-19. I know some people had some symptoms and discomfort after the vaccinations, especially after the second shot. But most people seem to have little or no discomfort from the vaccinations. I got the Moderna vaccine and did have some allergic reaction to both shots but the second one was more serious so I went to the ER and got some treatment but felt OK the next day.

Yesterday or two months later than my second shot I went to the Walk In clinic with some new symptoms that puzzled me. I had had two bad nose bleeds recently which usually is an indication i need to increase my prednisone meds to handle a fluctuations in my residual symptoms. My rheumatologist has suggested I increase prednsione from 6 mg back up to 10 for a couple weeks. I did this several days ago.

I used to be at 5 for several years but not able to get below 6 in past year. I always get an increase when I go to the hospital for inpatient treatment for pneumonia or other infection.

The clinician ruled out flu since there have been some cases in our area recently which might have explained my symptoms of serious fatigue, muscle aches all over and loss of appetite. I also tested negative for Covid-19. My lungs seemed clear so no indication of pneumonia. No fever or chills or other symptoms.

Her theory was the vaccination might have triggered a flare or relapse in my GPA or another new autoimmune disorder since they have seen other cases where patients with autoimmune disorders relapse or flare after their second vaccinations since it does activate the immune system.

Has anyone else had any similar experience?

I have over 45 years experience with vaccines and adverse events. Off the top, I will never have another vaccine for the rest of my life. This all comes down to human evolution. Instead at looking at our disease as a disability, I prefer to see us as a human variant. I don't need vaccines. I have virus killers already built in to my immune system. A recent discovery by me is that I'm CMV negative. Since I'm 64 years old, I've kissed more babies than I can count. I've sewed my wild oats more times than I can remember and shared hugs and tears to last a life time. Yet, I've never contracted CMV. Humans are not suppose to be able to clear the virus. Then, obviously I'm not human, because I appear to be immune to CMV. 8 out 10 Americans are CMV positive. It's important for weggies to know which one they are. The Cytomegalovirus uses up vast quantities of T cells, just to keep it at bay, reserves that dwindle as we get older. Since I have plenty of T cells in reserve, I am guaranteed a strong immune system for the rest of my life. My adaptive immunity is irrelevant, since my innate immune system clears viruses, even before my adaptive immune system enters the fray.

There's only one big problem. Vaccines are designed to heavily activate toll like receptors. I have unusual toll like receptors. Instead of a bb gun, I've got a double barrel shot gun. On one important TLR, only 2.3% of people have a gun as big as mine. So, you can take it from there. Very few people are designed like us. We have sticks of dynamite in us and the vaccines are the blasting caps.

[Masha]

DRZ,
So sorry to hear about your flare. In the back of our minds we all know it could happen to us. And boy, do I feel for you with that increase in prednisone. No matter how careful we are or how long in remission we just don’t know when GPA will rear its ugly head. Hope after infusion you will start to feel stronger. Try to stay positive, prayers are headed your way.
Masha

[drz]

DRZ,
So sorry to hear about your flare. In the back of our minds we all know it could happen to us. And boy, do I feel for you with that increase in prednisone. No matter how careful we are or how long in remission we just don’t know when GPA will rear its ugly head. Hope after infusion you will start to feel stronger. Try to stay positive, prayers are headed your way.
Masha

We had virtual visit today and reviewed my history and agreed the Wegener's Granulomatosis had been smoldering for awhile which is what made it impossible to get back down 5 mg pred for that part of my maintenance meds. When assessing a flare it is a judgement call based upon all info and history and my doctor whom I selected for my follow up care 11 years ago believes it is best to address it now with more aggressive treatment before it does any more damage. The back up plan has always been to use RTX anytime I had a serious flare but for 10 years I got by with out it so the view was not to rock the boat since my maintenance meds were working so well.

My last RTX was over 11 year years ago so it was a good run but it was CTX for a year that got me into remission and AZA and Pred that kept me there.

It is strange being back on 60 mg of pred but it sure got rid of the extreme fatigue and reduced the muscle pain and shortness of breath and continuous coughing. Lot of colorful wild dreams during the sparse sleep I got last night. I have to remember to control myself from trying to over do things due to my "delusions of adequacy". And the biggest challenge is managing my blood glucose levels but my Do It Yourself Automated Insulin Delivery system is really helping a great deal and my blood glucose levels have been much better that I expected.

The plan is also to start tapering my pred down by 10 every two weeks after the RTX infusion. Getting the RTX will be another trip down memory lane but then I will have to do the self quarantine thing for a few more months due to high risk of infection but after a year plus of doing it already that should be no big problem. A benefit of the pandemic! right?

[Alysia]

Dear drz,

So sorry, I hoped it was not a flare... My heart goes out to you...

It sounds that you have good docs with a good plan of treatment. So relieved to know that you have a machine to regulate your sugar levels. Thank God.

What helps my breathing greatly when I have bad coughing is to nebulize budezonide. It even helps to reduce my bloody nose and my red eyes.

Hang in there. You are in good hands. God loves you, we love you, you are in our prayers.

[chrisTIn@]

I 've had my first 'Pfizer-shot' today, and so far no problems but a tiny bit of a sore arm.
Second shot is scheduled for june.



I have to remember to control myself from trying to over do things due to my "delusions of adequacy".
And the biggest challenge is managing my blood glucose levels but my Do It Yourself Automated Insulin Delivery system is really helping a great deal.
The plan is also to start tapering my pred down by 10 every two weeks after the RTX infusion.



Very sorry to read you have to manage a flare right now, drz.
You seem to be in control of your treatment though, especially on the psychological side.
Your paraphrasis of the 'delusion of adequacy' always makes me smile :smile:
Keep up the good work, my thoughts are with you!

[ljeff]

Ive had 2 doses of the astra Zeneca vaccine and had no reaction to either dose - not even a sore arm. I suppose I do worry what it is really doing to the body and take the point crown eagle is making. I have been diagnosed a year ago in May. i have just come off my daily prednisolone as recommended by my nephrologist as this seems to be the protocol> aim on Rituximab every 6 months. I also take alendrotnic acid and calcium and vitamins D for bones, co trimoazole for lungs and iberiston for BP for my kidneys. Ive noticed over the last 3 months I am getting stiff joints> previously I had inflammatory arthritis but that resolved and was probably just the precursor to Wegners. My question is are the stiff joints related to Wegners?

[drz]

Ive had 2 doses of the astra Zeneca vaccine and had no reaction to either My question is are the stiff joints related to Wegners?

Roving joint pains are often one of the first signs of developing Wegener's granulomatosis. For me it was also one of my most common residual effects of the Wegener's granulomatosis along with increased bleeding in the sinuses. Inflammation of my eyelids were also a another common effect along with increased fatigue.Residual effects often tend to mimic those that were present when you were first diagnosed but they can and do evolve over time which can make them harder to recognize.

[ljeff]

Did you treat your joint pains with any specific medication

Roving joint pains are often one of the first signs of developing Wegener's granulomatosis. For me it was also one of my most common residual effects of the Wegener's granulomatosis along with increased bleeding in the sinuses. Inflammation of my eyelids were also a another common effect along with increased fatigue.Residual effects often tend to mimic those that were present when you were first diagnosed but they can and do evolve over time which can make them harder to recognize.

[drz]

Did you treat your joint pains with any specific medication

My joint pain seemed part and parcel of normal Wegener granulomatosis so no additional treatment beyond treating the Wegener's granulomatosis with an auto immune suppressant and prednisone was necessary to relieve the symptoms. During my early serious illness I had to receive a lot of transfusions, plasmapheresis, and intubation just to survive the Wegener's granulomatosis. If you have some additional joint problems like arthritis, then some additional medicine might be prescribed for you. During my current flare I had some joint pain and general muscle aches throughout my body but this was also relieved by boosting my prednisone medicine up to 60 mg a day. I will get my rituximab treatment tomorrow. Then they can start trying to taper down my prednisone medicine.

[MegD]

I got the original Pfizer COVID-19 vaccination one and two. After the second shot I had a big neurological reaction : new and increased symptoms with my multiple sclerosis.
My husband, even at 75, was healthy as a horse until he got the Covid vaccinations. After his second Pfizer shot he He began sneezing and coughing out of control, terrible pain in his face in the right side of sinus, water pouring out of his eyes, no appetite and refused food, bloody nose became constant And his lungs showed GPA spots all over. He has been stable taking 6 mnth Rituxin infusions. My MS is unstable, I've also developed rheumatoid arthritis.

[chrisTIn@]

I also had a flare after vaccinations for Covid and flu last fall.
But maybe I would have gotten the flare anyway, and it could have been much worse if I wasn't vaccinated.
You cannot know for sure. Talking it over with the GPA-doctor is probably the best...

Anyway... I don't regret taking the vaccinations, although they seemed to have caused some side-effects too.

[drz]

The flare caused a lot of lung damage and shortness of breath which ended my long walks I used to enjoy. I don't dare try walk around the block anymore since i worry I could not make it and would end calling for help to get back home. My progressive neuropathy makes any walking more difficult and limits how far i can go.

I also skipped the flu shot this fall since it is not likely to do much prevention due to poor immune system and my age and it might trigger another GPA flare. I probably won't be getting many vaccinations anymore for this reason. I do get IVG monthly infusions to try reduce my risk of pneumonia and other infections.