Got Moderna on Sat. Not doing great. I was planning on it being crummy, but for shot #1 it’s more like sick + flare vs “side effects”.
Anybody else having worse than expected reactions. I’m taking Stelara (immune suppressant), but there’s no info on how the vaccine and biologics/DMARDS interact.
Also, I only know 2 ppl in my age group (40-55) who *didn’t* get worse than expected side effects. Some of the stories are borderline bizarre. A good friend was just released from the hospital. Had a seizure after the shot. Zero history of seizures or epilepsy. Another: night terrors. She had the whole flu-like response but suddenly a return of night terrors like she had when she was a kid. So strange. These are the healthy ppl I know!!
Still 💯 supportive of vaccines, but really thrown off by how hard it hits. Pretty nervous about shot #2 😳😬😬
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katidid
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So sorry to hear this. Im wondering if some meds need to be stopped during vaccination. My doctor told me ro stop methotrexate 2 weeks before the vaccine. I did. I take mmf, hydroxy, prednisone, and had no side effects from moderna. I feel lucky. Even developed a huge immune response to it...
Interesting. I was on prednisone but they suddenly stopped it when the pandemic really ramped up in my area. My Rheumy said being on steroids could result in a much worse outcome if I were to contract Covid. It really sucked, b/c steroids are often the only thing powerful enough to get me up and about, as well as reduce the pain.
I just finished up talking with a speciality pharmacist, and she says that while the only research that had been done - and it’s not a study to lean on at all - was with the single shot J&J.
She said not to stop my biologic injections, just to space it out by two weeks either before or after getting vaccinated.
My mom has rheumatoid and she’s on prednisone and Orencia. They told her about two week “spacer” ... but after she had her infusion! 😬 She’s ok except weeks of true fatigue. She’s coming out of it and thankfully no other symptoms.
So, it’s soundly like two weeks is the new rule of thumb.
I and my husband had the Moderna vaccine (I live in Italy, there is no use of Moderna in the UK as far as I know), I have an a/i disorder and take pred, he doesn't. With the first shot we both had a sore arm and on day 4 we both felt a bit ropey for a few hours but by morning felt fine. We had the second jabs yesterday, Sore arms again and OH felt very shivery and cold immediately after the shot but I didn't and he warmed up later. Too early to say any more.
There were a few rheumies who panicked about pred - ours couldn't/shouldn't have, it is the only medication that works for us, but even so a few rushed patients off pred, causing a flare. There is a suggestion that patients on pred did worse with Covid - but I have several friends who actually did well. I think the question that had to be asked was not, was pred the risk factor or was it the underlying disorder the pred was required for.
Think the research may be bearing that out. The autoimmune patients that have done poorly seem to be the same patients as in the general population - those with hypertension, kidney disease, obesity, heart disease. So it makes sense that those patients on high dose steroids are also those patients who are at risk for other reasons.
Exactly. Now will they please tell us how good our jags were!! I've had both mine, second yesterday. Shan't be changing much in how I behave for some time to come!!!Won't be drinking/eating inside - outside tables only. At least we have the right sort of weather - has to be nice to want to walk there in the first place!
The vaccines are miraculous. The UK, the US and Germany knocked it out of the park. I can’t even imagine where we would be without Aztrazenaca, Pfizer and Moderna. I just read about a biologist who was very involved in vaccine development and he is now working on cheaper methods that could help countries like Brazil that are really suffering and cannot afford the expense of current vaccines. The guy is an assistant professor at a state university in Texas. He probably works until midnight every night and gets nothing but his salary, that article and the knowledge that he is saving the world. Amazing.
I meant specifically we a/i bunnies - how good is our protection.I want to know if I can trust mine is as good as anyone else's.
That's what my husband's career was - almost all his research involved working 16 hour days, normal work hours at the hospital, straight into the study when he got home. When our girls were small he often spent 24 hours at the institute running experiments. He developed a way of continually measuring oxygen levels in a small device that could cost a few hundred dollars which would have saved lives, especially of babies in NICU, in the developing world. But it threatened the established big companies devices and it was smothered. Had it become available, even the western world would have used it. No-one was interested in furthering cheap solutions.
What a shame! These dedicated scientists whose work goes untapped.
I see. Yes, I thought you were referring to the vaccines as a whole. This blunted response is a concern. I really don’t think we can play that down, do you? I don’t see any other way than for countries to set specific guidelines for vaccinated people on immunosuppressants. They just can’t guess their way out of this one. Hope the results turn out to be better than the Johns Hopkins with solid organ transplants.
We are entering a possible fourth wave here in the US and too many Americans are discharging their masks and living like this is over. Sometimes it occurs to me that these people don’t know how lucky they are that they can have as their biggest concern whether to wear a mask, give up their freedom, or have a drink at a bar. One day on this forum to see the fears of the vaccine side effects, loneliness of isolation, and worry about about being able to endure Covid if infected could put things in perspective.
The UK stuff on cancer patients looked promising though - after a timely administration of the second vaccine! I had mine after 4 weeks as indicated by Moderna. It is people in the UK that concern me with the 12 week nonsense.
My view is that if they don't like wearing a mask - hope they enjoy getting up close and personal with a ventilator! Or even an oxygen mask. Not to mention Long Covid because you don't have to have been in hospital to get that.
« Up close and personal with a ventilator » is right. 😅 There were Trump supporters who told their ICU nurses until their last breath that they could not have Covid.
Glad the cancer studies were promising. There was another in the U.K. for people on a IBD biologic that looked positive. Let’s hope. Clearly, autoimmune patients are a high priority and seem to have been from the beginning.
Interesting. I’ve developed a great friendship with someone my age who survived kidney failure (undiagnosed autoimmune disease), had a transplant and literally can’t survive without steroids. He’s been really avoidant about getting vaccinated - possible he was told what I was which is no steroids. He doesn’t take those, dialysis is his only survival option. Gonna dig a little deeper and see if we can get a straight answer. Always concerning when conflicting info like this is floating around.
As for the researchers and technicians, bless them. Without them we would be truly screwed (sorry to be blunt!)
My hope is that any extra vaccine in any country is re-routed to countries in desperate need.
I've been on steroids for nearly 12 years, not massive doses, never above 15mg, but I have had my jabs - on the ground some protection is better than none and they will look more closely at whether we need top-ups so I will not be playing catch-up any more than I must.
Great point! I think my doc has rushed to judgement and it did really affect me badly by going off it. Think I’m going to get a second opinion. Need to get off the couch and get this flare under control! Thx so much for letting me know your experience!
So sorry to hear this, katidid. How long have these side effects lasted? Really hope they ease up for you. If they go away, maybe it is good news you reacted to the vaccine. We were just discussing this on a thread today. A blunted reaction is a concern regarding all patients on immunosuppressants.
Keep in touch and definitely let your doctor know what is happening. Don’t be around anyone who isn’t fully vaccinated. The Johns Hopkins guy wants our CDC to make this clearer to the immunocompromised patients. Will be interesting to see if the guidance changes.
I’m on day 4 after vaccine 1. My energy is back, but still feel “ill”, but I think more concerning these weird mental states. It’s really hard to explain but I don’t feel like myself and my vision is ... wavy?? I do have CNS involvement and seizures, so it’s possible my brain is reacting poorly. The only other symptom that is really disruptive is my inability to regulate my body temp. My fever is gone, but during the day I’m chilled but come evening I’m laying under an air conditioning vent desperately trying to cool off. Makes getting any recovery sleep a bit impossible.
Doesn’t sound like the flu-like vaccine reaction. Four days is too long and it does seem like your neuro stuff might be kicking in. Tell your doctor. They will try to keep from increasing steroids probably because of fear of further blunting the vaccine. They need to know what you are experiencing.
you’re right, something is wrong. Butterfly rash this AM. And the headache is borderline crippling. Hubby proposed that I was already moving into a flare when I got vaccinated and maybe this is just some hybrid response. Fair guess, but not convinced. Contacted three docs. All I get is “we don’t know” and zero advice on managing it. And now I look outside and see what you do. Ppl without masks, informal sporting events with unmasked people gathering closely (still not allowed in CA until June 15th). Only 18% of our population has had both doses of a vaccine. I’d wish bad things for them, but hard when your best friend was the ICU nurse working in Covid units in hot zones and now lives with PTSD from everything she’s seen and been through.
Zero response or education from our health departments. Just inexcusable.
We’ve been super safe. Which means spending the last 13 months inside 95% of the time. Overpaying for food delivery. Seeing the faces of friends and family only once in person in the past year.
The only blessing: I’m used to being stuck at home because of this AI stuff. But the psychological toll it’s taken on the ppl I know who lost their jobs, who have developed severe mental health issues, etc. .... too much. It makes me want to scream at ppl who have tossed their masks aside. It’s simple denial and ignorance to think this thing is over and risk their and other’s lives to go grab a beer or eat out vs in.
You have a right to scream! It is people like you who can get harmed by the carelessness. We have rich people in this country trying to buy their up the vaccine queue, too many people healthy people fearful of the vaccine, and way too many people tossing their masks out. We are supposed to be protecting the vulnerable. That is why the elderly and the chronically ill got the vaccines first.
I am glad you contacted your doctors. They may have decided increasing your meds is too risky in terms of vaccine effectiveness. They will have to watch and hope you don’t get worse. Interesting that those on immunosuppressants could get a booster. At least the experts are thinking ahead.
I wish I had advice about that headache. I am allowed to take a medrol dose pack for neuro symptoms. You don’t want to do that now after the vaccine, though. Hmm .. do NSADs help in higher doses for you?
I have had just a sore arm after first shot of moderna I too am in the 45 to 55 group. My first shot was three weeks ago next shot is Saturday. I will let you know if that one has any effect. I have felt great the three weeks after shot and hope the next goes as well.
Sorry to hear this is happening. I had my first shot a few weeks ago, and I have no side effects at all. No worse than getting the regular flu shot. I was a little nervous having so many blood clots that are still very huge, but nothing negative happened. Hope you feel better soon!
I didn’t have the Moderna jab, I had the AstraZeneca one. (We have just started using Moderna in the UK this week). But I’ve had something similar happen in that I appear to have gone into a flare. I’ve never had a flare like it, not lasting this long. I had the jab on 11 Feb, had a few side effects for 2 days, then better for 3 or 4. The day after that I woke up and everything was hurting, joint and muscles, could just get out of bed. Really bad fatigue too, much worse than usual. Others went through the same but their flares died down, mine hasn’t.GP tried me on a 5 day course of pred which helped but all symptoms returned a couple of days later. First time on steroids. I’m a complex case so no one locally has any idea what to do. Luckily I can afford to talk to one of the doctors at the London Lupus Centre and I have an appointment tomorrow. It will be interesting to see if he has any suggestions to help and if he thinks I should have the second jab or not.
You have my sympathy. I really hope both of us feel better soon.
Mine took over a week to react. A flare of sorts but no pain just shivers, breathless ness, migraines a d feeling crap for 3 weeks. Starting to feel ok now, next jab due in 3 weeks. They the 2nd one is better !? I just want to know how much protection this is really going to give us immune suppressed people ? Hooefully the London Lupus Centre can help !?
Dr Kaul was excellent. He wants me to have an 8 week course of steroids. But I’m not allowed to have the 2nd jab while I’m on the steroids. He isn’t worried about the reported clotting of the Astra Zeneca jab but is a little concerned that it might bring all these symptoms back again. So I have a choice, jab first then 2 weeks later have the steroids. This would cover a flare from both jabs. Or steroids first and then jab if the pain is still affecting me badly. But I might need more steroids after 2nd jab. Or the steroids and no 2nd jab at all at the moment.
Im not immunosuppressed but Someone has suggested getting a test to see how much I have produced antibodies, I think it might be good for a lot of us. I’m not sure how reliable the test is though and we can’t get it on the NHS yet in general. So I will phone Dr Kaul or at least leave him a message to ask him about this idea.
I had my second moderna over 24 hours ago. I had the recommended four weeks between jabs and my only side effect is a pretty painful arm. I drank tons of water pre and post shot. I meditated ( my mantra was I will not feel sick) and exercised more than usual yesterday ( some studies recently suggest acute exercise after flu jabs lessen reported side effects). Today I feel great and am so happy to be just 12 days away from full immunity.
Honestly, I think the horror stories are actually causing a-lot of the reported side effects. It is being more and more proven that reading the possible prescription side effects causes a nocebo effect. And the placebo effect is already well known. I chose to hope for the placebo effects rather than the nocebo ones and it has paid off for me.
Read some initial data: the Covid vaccines *may* reduce the effectiveness of certain medications used to treat autoimmune disorders. Mine is on the list.
So the medications don’t interfere with the vaccine, but the vaccine may interfere with the medication. So far: reduced efficacy or (simply put) deactivates it.
Hoping this isn’t the case. I ended up being ill for 7 days with vaccine dose #1. I’m already scheduling 14 days of being totally laid out for #2. All the data shows more and worse side effects for that one.
I have a friend with epilepsy who experienced a severe fit ten days after each AZ JAB. 🧐
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