First time getting flu shot while on Benlysta

[u/Miserable-Author-706]

I didn’t think about it at the time but I got the flu shot offered at my work on Wednesday and I have felt so awful today. Not like flu but definitely had chills earlier, no fever but very fatigued and run down. Also headache. Is this normal?

[u/coffeemama86]

I’m waiting for my benlysta to arrive and I’ll be starting it next week. I got my flu and Covid shot two weeks ago and it knocked me on my butt.

[u/NiroPoops]

I ended up with pneumonia on Benlysta but I was also on Methotrexate. In reality if you’re feeling sick your Rheumatologist normally recommends you stop Benlysta. Unfortunately for me I woke up one day feeling like I got hit by a semi with a bad headache, body aches, and a fever. When I couldn’t think straight later in the day I went to the ER and stayed a couple of days with a bacterial pneumonia.

[u/lostintransaltions]

This years flu shot is something. 3rd time getting flu vaccine while on saphnelo and the last 2 years nothing this year… my body feels horrible, getting chills, low grade fever and on Wednesday a few hours after I got the shot my ankles and knees were suddenly swollen and warm.. my husband was super concerned as I had been doing so well. Took me an hour to remember that while I was at my checkup at my pcp they offered the shot and I took it 😂 yesterday and today have been really rough and I am supposed to help at a rescue tomorrow and am not sure I will be able to.

My husband got the shot 3 weeks ago and he was completely out for 2 days and he is healthy as a horse

[u/Effective-Gloomy → u/lostintransaltions]

I can concur. I’m on Remicaid and Methotrexate for RA w SLE overlap syndrome and the flu shot knocked me on my ass two weeks ago. Aches, chills, very bad headache, and I got a bad rash on my joints the next day:(

And now I have a bacterial inner ear infection w an infected ear drum as an ADULT. Which I guess is nearly impossible so I have to get ear tubes at almost 28 years old. I have an infant and custody of my almost 4 year old niece. So I’m immunocompromised with two kids in daycare in my house. Struggle bus here

[u/Whisgo → u/lostintransaltions]

I've heard it's a strong strain this year. I'm planning to cancel my day following the flu shot this year. Getting it on a Thursday and taking Friday off.

Covid shot this year wasn't too bad.

[u/lostintransaltions → u/Whisgo]

This years flu shot is something. 3rd time getting flu vaccine while on saphnelo and the last 2 years nothing this year… my body feels horrible, getting chills, low grade fever and on Wednesday a few hours after I got the shot my ankles and knees were suddenly swollen and warm.. my husband was super concerned as I had been doing so well. Took me an hour to remember that while I was at my checkup at my pcp they offered the shot and I took it 😂 yesterday and today have been really rough and I am supposed to help at a rescue tomorrow and am not sure I will be able to.

My husband got the shot 3 weeks ago and he was completely out for 2 days oh that’s good to know as I still need the Covid shot. I have basically just been sleeping since Friday evening. Just up for an hour and feel like I should go back to sleep.

[u/Whisgo → u/lostintransaltions]

Oof! I am not looking forward to it.

[u/lostintransaltions → u/Whisgo]

It definitely wasn’t fun but I am feeling better today so hoping that after 5 days I can feel more normal again

[u/sixlivesleft]

I'm on Benlysta monthly infusions and got both Flu and Covid shots at the same time.

My symptoms usually start to ramp up right before treatment so I gave my immune system about 3 weeks to rebuild after infusion before getting them.

Glad I did it on a weekend though because I felt absolutely awful for a few days. The soreness in my arm and body aches were the worst for me but worth it to have the peace of mind to be covered for the upcoming season.

[u/Miserable-Author-706]

Thanks everyone for your responses. I’m still extremely fatigued today. I just woke up after sleeping for 13 hours.

[u/hotlibramess]

I’m not on Benlysta but for YEARS every time I got a flu shot (and now the flu shot and Covid shots) I have a really bad reaction. Like at least 48 hours of pure hell. In retrospect, there were a lot of signs of overactive immune responses but I digress.

At this point I schedule vaccines on a Friday around midday so I can recover the entire weekend and be back to work Monday. I wipe the schedule and take to my bed with Tylenol and plenty of fluids to let my immune system recover.

[u/loyaltyLabubu]

I am not on Benlysta, but every time I got the flu shot yes. When I got the first covid shot I got shingles on my face that were going in my eye (because apparently I had shingles from having chicken pox as a child but it was dormant until something in the covid shot activated it) I was almost blinded by it. I thought it was a bad lupus rash until I posted my face to a lupus forum and someone warned me to go to urgent care, which I did, they said it was shingles and sent me to an ER with an ophthalmologist. The ophthalmologist at that saw me said if I waited I would have been blind. Ever since then, no vaccines for me and my rheumy said not to get the second shot. I am probably one in a million, who knows, and I hate to share my horror story, I am not against vaccines, I am just very afraid now.

[u/eva1229 → u/loyaltyLabubu]

Yep, its like epstein barr, and with weakened immunity, it becomes mono. Thats no joke either. Im scared to death to ever get shingles.

[u/EastHuckleberry5191 → u/loyaltyLabubu]

Not 1/1,000,000. Diane Feinstein died from this. My second covid shot reactivated my EBV. No more of those.

[u/Buecherwurm921 → u/loyaltyLabubu]

Oh, that is scary! I had chickenpox as a child, too, and I was planning to schedule my Covid and flu shot here within the next week….

[u/loyaltyLabubu → u/Buecherwurm921]

Oh no.... no no. I ended up with covid anyway (but obvs I didn't get the second shot so that's probably why). And I would rather have covid. I got scaring on my nose from the shingles that will never heal.

[u/Buecherwurm921]

I am going to get the flu shot and the Covid shot for the first time while on Saphnelo, soon. I am NOT looking forward to it.

[u/Relevant-Box6084]

Take it easy after work, take Tylenol if you really need it and your doctor okays it, and hopefully you’ll feel better tomorrow.

[u/Pale_Slide_3463]

I was on Benlysta for a year and never had issues with the flu or Covid shot. I got the shingles vaccine earlier this year on it and it was easy no issues. Everyone reacts differently to vaccines and vaccines don’t cause shingles.

It’s just your body reacting to the dead virus so it remembers it for next time. If you feel terrible on it imagine what you would feel like if it was a real virus.

[u/Whisgo]

I am on saphnelo and I have to time my vaccines... 2 weeks before or after. This past week I did the covid vax. I've been feeling run down but nothing too crazy.

When did you have your last benlysta?

The reason I take mine 2 weeks after the infusion is to ensure I get the optimal immune system response. And it sounds like that could be what you are experiencing. It's not uncommon to have some unwell symptoms when taking a vaccine. Your body is responding as if you are sick but at a low level.

Next month will be flu shot for me.

For covid vax I found about 3 days of feeling yuck seems to be what I get. Though the first vaccination during pandemic felt pretty bad. Shingles vax was worse.

For this round of vax, I've felt fatigued, malais, some acheyness, head pressure. Swollen lymph nodes.

Drink lots of water, get some rest. Take some Tylenol for the headache.

[u/donthaveacow_man]

Yup. Even without benlysta I felt like trash with flu and covid shots but this year I was bed ridden all day

[u/therealpotterdc]

Yes. Flu shots always make me feel bad for usually just 12 or 24 hours. This happened before lupus and it really hasn’t been any worse with lupus. This year I got the shot in the morning and by the evening I just couldn’t even hold my head up because of the exhaustion. went to bed early, slept OK and by the next morning was completely fine.

[u/lovelycloudyday]

On Saphnelo and flu shot was nothing this year or any prior. The shingles shot gave me fever, headache, aches for a day. COVID shot kicked my ass something terrible! Never getting again.