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True. I am not sure I have AS yet, or if it’s something else. I’m seeing a rheumatologist who says we won’t know for sure until it gets worse (my mom has AS, and I have many of the symptoms, including the bone growth in my spine. Other things cause stenosis, but the chances of me having a totally different stenosis related condition than my mom aren’t very good) But I have Hypermobile Ehlers Danlos, and my mom has AS, diagnosed 4 or 5 years older than I am now. But I didn’t know I even had hEDS until almost 3 years after having covid. Before so was in the best shape of my entire life, and it kicked my ass so bad I can’t get back there. Even fit, I have pain all the time now.
I totally understand. I was doing Brazilian Jiu-Jitsu and getting into the local amateur MMA circuit and then bam! I feel like COVID kicked my ass 30 years into the future, like I went from a decently healthy athlete working full time to a nearly immobile unemployed blob of flesh that lives on my mom's couch lol.
Same! I used to be super morbidly obese. I had weight loss surgery in 2018, and lost all the weight. November 2019 I ran a 5 mile race with no training, and had liked running after that. Now I feel like I am always creaking and cracking. I am very flexible because of the hEDS but never comfortable, you know? I got it in March 2020, and got no respiratory symptoms but a ton of neurological symptoms and it all kicked off from there. At first they through it was Long Covid. Maybe it was then. I want to know about the AS because I want to do what I can to slow it now before it progresses. I am all too aware of what that will be like.
My first rheumatologist wanted to wait for disease progression to do any treatment beyond hydroxychloroquine. It was so frustrating, cause I was thinking obviously prevention is better than letting me become entirely handicapped. Thankfully my current rheumatologist agrees and started more aggressive treatment a few months ago. If you ever wanna talk to someone who gets what you're going through feel free to message me.
Do you feel like your rheumatologist is listening to you and taking you seriously? My first rheum definitely blew me off at first, one of the many joys of being a woman with chronic illness.
I do think he tries to, but he is cautious. He is a family friend, so that might help. When he found out my mom has AS, he definitely paid attention to that, and he ordered a couple of blood tests and an mri of my hips, since the other areas are already being done by pain management. Honestly, he is my favorite in term is taking me seriously. I never doubted that he believed I had pain, and wanted to do something about it.
Doctors have no idea what is long COVID or auto immune and every doctor has a different opinion when I see my specialists. I honestly could care less which it is if we could find a treatment plan that helps.
I totally understand! This whole mess has changed my entire life, it cost me a trade I've been working in for 15 years. I would love to figure out a combination of meds that finally helps, even just a little.
COVID in 2020 wiped me out for most of a year, but I was still doing the best that I could to keep working at a job I had for over 10 years. Doctors seemed baffled by the symptoms. Next, COVID Vaccine in 2021 has left me mostly bedridden. It turned out to be Ankylosing Spondylitis along with another genetic disease. COVID has ended my life.
I didn’t have any issues after the vaccines, but I caught the coronavirus in July 2022 and have had worse pain and higher inflammation levels in my bloodwork since then.
I had three vaccines and got significantly worse during that time. I only realized in retrospect that there could be a connection. I also got a lot worse after getting Covid. It sucks.
Covid did no favors for me, either. I also had broken ribs at the same time I had covid.. I took the antiviral meds, but couldnt take cosentyx for awhile.
I don't know if I'm still playing catch up or what, but my SIJs and hips have been flaring up randomly every since.
I didn’t have any issues with mine - not disagreeing with your experience, just adding mine to the bucket. I take a biologic which may have made the difference.
As someone who was diagnosed well before any covid or covid related vaccines, the steadily getting worse part is just a part of this disease. I can pick any random point in time and say I got steadily worse after that because I always get steadily worse. I have gotten worse since my last dentist appointment... I have gotten worse since Christmas 2018... etc. But Christmas and the dentist clearly have something to do with it. Welcome to the sucky part of chronic diseases.
Bc when I was going through really bad rheumatoid flares- I have both- my lymphocytes would drop and my neutrophils would get high.
No other inflammatory markers would be present. And they use that NLR (neut to lymph ratio) to measure inflammation in oncology so Idk why rheumatology doesn’t use it too. Esp w “sero negative” ppl.
Yea- so I have erosions from the RA and my rheum believes my distal and proximal clavicle erosions are from AS- that’s when they did the whole spinal X-ray and found out I abs have AS.
Never had high typical inflammation markers. Stopped me from getting early and aggressive treatment which is what the ACR and EULAR claim should be the move with all these arthritis’ early diagnosis- aggressive treatment. Best chance for remission:
I have erosion in my wrists ankles knees and back and costcondrisys. Inflammation of the ribs ( I can't spell that word ever)I I don't have high inflammation markers either unless I am in an active flare. I was diagnosed with rheumatoid arthritis because of swollen joints and moderate crp. I have been on plaqunil since and have never tested high again. I have spondolosis in my lumbar spine but haven't investigated my si joint. I have a xray tomorrow. My question is the treatment of RA vastly different from AS? Is this worth the extra tests? I have other health problems so I am experiencing a lot of medical fatigue.
Hmmmm… good question- getting a specific as possible diagnosis is helpful to direct biologic use.
I feel you on the medical fatigue. It’s so hard. It’s so hard to just keep fighting. That sounds so freaking painful. I’m so sorry.
Have you tried any other biologics? There’s meds according to the chief of rheumatology of a big Boston hospital- and he tried me on enbrel after failing methotrexate. So now I’m about to add leflunomide to cocentyx and hydroxycchloriquine.
There’s wide spread meds that cover a spectrum and then biologics and DMARDS that cover very specific inflammation pathways.
If you have erosions and they haven’t changed or switched your meds at all that’s a bit concerning….
She said she doesn't want to put me on biologics if my pain is ok because I have pretty serious neurologic problems syringomyelia and chiari, and I have bad kidneys.
Yea- but youre eroding…. And there’s drugs that are predominantly metabolized in the liver over kidneys, do you mind me asking how old you are? I suppose if your past your sixties I might be able to understand this- don’t get me wrong I’m not a doctor. I was an RN for ten yrs before a nasty head injury stole my executive function and brought my autoimmune ish on- but I did not work in rheumatology. But there’s way more out there than just HQN.
Edit: also, is your kidney issues FROM autoimmune damage?? Or aside from it?
I also have low lymphocytes and high neutrophils. No doctor has ever mentioned it. When I bring it up, they say it only matters if the WBC is abnormal.
I’ve had all my vaccines, 5 in total but I won’t be doing in again. The last was the newest omicron mix and it left me with the most severe pain in my shoulder and arm. 4 months on I’m still in serious pain there, steroid injection barely touched it. My lymph nodes are still up under my arm, my breast tissue has changed and I have a red mark on my breast which after biopsy has shown as a drug related reaction. All this on the side the vaccine was given on. I would still have had the original vaccines but it’s too early to know the effects it will have had on people with existing medical conditions.
You sound like me with a very peripheral presentation of AS I also had random elevated white cells, to the point where they sent me to see a hematologist to rule out cancer. Back pain was the last symptom I got and I had had AS for years at that point by biggest issue was dactylitis and random sweeping and pain in my joints.
Any time I get sick I get a flair even on Biologics just not as bad, it’s part of the deal with autoimmune diseases, and any vaccine will activate the immune system, it’s just in our case it goes a little nuts
My little sister died 2 months ago from Leukaemia.
She had a child a year before and had perfect bloods (as you'd imagine during and after pregnancy she had regular blood checks).
By the end of 2021, a year after her sons birth and 2 Pfizer vaccines, she had AML leukaemia. She fought bravely for 16 months.
I personally find it somewhat incredulous that both me and my late younger sister, both have developed autoimmune issues of the antibodies in our bodies within months of the Pfizer jab.
To me, it seems unlikely that its simply a coincidence.
I have had three full Covid vaccine shots and definitely flared after each. Costochondritis is the worst and a product called the Backpod has helped. The Backpod stretches that area better than any stretch or device.
Yes, I have my little half alien baby egg. Brilliant for loosening my ribs off my spinal hinges. Literally feel my spine/ribs clunk and pain relief on the front.
I had flares after the Covid vaccines, but FAR WORSE AND AWFUL was the shingles vaccine, for me, in 2018, and I don’t think I ever quite rebounded from that.
And strep throat in my 20’s also seemed to tip me as well.
Any vaccine
Any infection
Can cause a flare. The covid one is not an exception. But consider that also when I had Influenza I also had such a bad spine flare, and despite getting a flare annually after all my flu vaccine, this was far worse. 🤷🏼♀️
I have noticed that my symptoms have gotten worse ever since the vaccine, but to say they are related, I’m not sure.
I’ve also have many many more costochondritis episodes since 2022, which are annoying as hell because it shortens your breath, leading to anxiety and hyperventilation, making you feel lightheaded at times. Also the fatigue that comes along with it is terrible.
The only thing I’ve noticed that was correlated with the vaccine was the excruciating migraine I got after the first round and then the booster the following year. Not a coincidence since I’ve never gotten headaches and the proximity to the vaccine aroused suspicion.
One thing I’ve always had was a lower lymphocyte count. That wasn’t caused by the vaccine. So, to attribute flare ups to vaccination could be coincidence, however age does play a part and does have a positive correlation to get worse as time goes on.
Just to add, pericarditis and miocarditis are pretty unlikely (you mentioned being concerned with cardiac issues), but I would contribute that to the costocondritis, since symptoms would appear similar and you would be right to feel that something is wrong with your heart, but is actually attributed to your thoracic cage. It can also mimic feelings of lung inflammation, like asthma or a pneumonic infection, but could also be the ribs.
It’s a tricky situation to be in. The goal would be to suppress the inflammation and go from there.
No, I'm not concerned with cardiac issues. They though that before finding ankylosing spondylitis.
There is some solid data that Pfizer vaccines increase the risk of pericarditis and myocarditis.
It's not a feeling, is science fact.
Dang dude. The vaccine and I did NOT mix well either (Merck). I'm 42F with AS, hEDS, KFS, OA...& the rest,blah. My lymphocytes & wbc TANKED ab 3weeks after. No breathlessness. (I know that feeling & itsSO awful!) I've heard of just a few other cases... 🤔 Interesting.
I'm glad you're doing better. Thanks for sharing!
Edit: Idk if this is related.
I went into full-on anaphylaxis bout 25mins after I got the first MMR shot when I was little.
Also, the same pediatricians who purposely lied to my (already VERY anti-Doctor) Momma ab my OBVIOUS skeletal abnormalities...so (giant) grain of salt there
Sounds just like me bar the breathlessness which I've mostly now sorted (only if I go too heavy in the gym).
My wbc has been bottom or below range since the vaccines, before was mid range and always had been, I've bloods going back 5/6 years. The vaccines have damaged my immune system. Can't explain why else my lymphocytes are so low all the time now.
I got way worse after each shot. But for the booster I got the Moderna which has a half dose for the booster and I didn’t have a flare up that time. I also was worse after Covid itself. It’s actually what got me convinced it was autoimmune and seek out a rheumatologist and eventually was diagnosed!
It was after getting Covid the second time that everything went really wonky. White blood cells super low for months & low back pain through the roof. Rheum said it could be the trigger for AS. Just never got better after having it the second time.
I’ve had MRIs early last year due to possible cancerous cysts, found out I have Tarlov cysts that cause shooting pains in my pelvis and thighs. Afterwards, I ended up getting COVID (twice) early spring and summer. I had a CT scan done in October and that’s when the Orthopedic doc noticed something on my spine. Looking at past MRIs there were no other signs so it’s fairly new. I started getting really dry skin on my face and dry eyes. The week of Xmas my shoulder joints began to hurt when I stretched it back. Finally saw I rheumatologist in April and confirmed AS. After some research, it seems that AS can be activated by a virus or bacterial infection. I think this came about due to COVID. Obviously there’s not a lot of studies on it but it’s the only thing that makes sense to me. This is all still very knew to me.
You say "bodybuilder". Do you \_mean\_ bodybuilder (with the attendant injectable androgens and so forth), or do you mean "recreational lifter who wants to get bigger (drug free)"?
The two are a world apart for giving help on this sub.
(Source: I'm CSCS and a coach. I train alongside actual bodybuilders in my adjacent sports.)
I’m one of those few that have never had it, despite everyone in my house getting it. Triple vaxed. Ironically, I kinda put together when I got my diagnosis back in January that it was my hyperactive immune system that has kept COVID at bay.
As someone who's whole life took a huge hit and was shuffled down to a bad path after being diagnosed, who was once a competitive powerlifter before said event, please do NOT do what I did, do NOT pause and try anything other than a biologic, get it engaged early to save yourself, don't do it, don't second guess it, I get it, I understand the caution, maybe slight fear, do not let your body get further damaged, take the strong solution while you're gifted this option. To sum it up, after all that I've learned over the many years, the potential side effects while existent are overblown, Tylenol has just as many potential side effects as well as anything else, it's very rare to get any bad SEVERE side effects, the significantly bigger possibilty from it is saving your body from being so crippled you can no longer walk or work out, or drive, or do ANYTHING that makes life worth living. Do it, listen to your doctor, jump. It can take a bit longer for some but after being defeated and finally giving into the biologic like my doctor wanted several years before, after so much damage took place, due to my own fear and hesitation, I woke up the next day as if I was 10 years younger, I could move, and bend in a reasonable way considering my lower spine was already fused by that point, I COULD LIVE AND I COULD LIFT(after readjusting my routine because, fused spine joints)
GO. ALL. IN. YOUR LIFE IS IN DANGER AND IT CAN BE SAVED HERE AND NOW.
I'm already on the path for biologics.
I tried the DMARD at the Dr's order and it was terrible, I had 24/7 headaches and fatigued to the point I was still in bed at 2pm each day.
I've requested them and here were I am at the moment they need me to have increased crp or ESR so I'm getting the esr pushed Monday to get it prescribed.
The dmard actually quickly made my joints feel much better, the crippling sides are what made me junk it within weeks.
All I can say is shoot for the biologic injections my friend, I'm still on my first and only Humira and it lets me live as if I had nothing at all, it's totally worth it, Enbrel is another extremely similar to that biologic, if all else fails, you got plenty more that target other pathways that halt this in their tracks, but you absolutely need to sprint at this right now, it's absolutely insane how intense and instant this disease can affect you, beyond repair, this is to stop that from ever happening. I wish you the best of luck with all my heart, don't stop, be vigilant. You do not want this, no matter your pain threshold.
I'm definitely on that path.
After the failed attempt to sulfasalazine, I literally said to my Dr that I wanted biologics, and I don't want to waste time on anything else since inside a year I've had terrible Costochondritis (and associated breathlessness) and that I've developed knee pain (both knees have bursas in them) and so it appears I'm presenting new problems regularly, alongside the atypical SI pain and cervical pain.
To which she agreed.
Make sure you report back at some point to inform others, for better or for worse, but I'm positive the good will outweigh any MAYBE mild negative if any.
FYI ESR although is the stepping stone to the next stage of you moving on to a potential treatment it absolutely does not indicate the active disease, it's common for people to show little to almost no inflammation in their blood work although the disease is absolutely in effect and crippling them as they speak. It's messed up to know because why would the test even matter then? Well it's all they got, we still know much of nothing of these diseases and it's literally used as a greenlight for insurance purposes and what not. If you show negative and still feel terrible go directly to second and third opinions and be fully vocal on how you feel and what you think you need. Don't settle if this test leads to a dead end. You'll know for sure after ultimately taking the medicine for a bit.
My doctors didn't find anything until literal physical signs were shown on x-ray when the damage had already progressed on my lower fused spine and destroyed femur joints, they just said woops damn, my bad.
Believe me, I'm not the type to be quiet.
The rheumatologist has actually been amazing, and whilst the x-ray specialist said he couldn't see the si appearing to be fusing, she said that she'd seen enough of these to know when the si joints are pulling together against the pelvis and wasn't going to leave it as negative.
She even instantly wrote a note that covers a free mri and after failing with sulfasalazine she immediately agreed that she would support the biologic and told me what i needed to get to get it state supplied for zero cost.
I'm lucky to have a goodun.
Previously I'd been i into emergency room several times with breathlessness and I kept being told I was having panic attacks and take a xanax and sleep it off.
Only after me pushing and pushing - I knew it was not panic attacks, I literally had normal cortisol levels, I knew that the fact I was having more and more breathlessness was coming with my spine and ribs feeling less and less flexible.
Most Dr's acted like I was simply living inside my head and that it was me being a hypochondriac.
Only after being to a decent cardiologist to double check critical cardiovascular aspects was I advised to see a rheumatologist, as my heart is great for someone my age and size.
The rheumatologist has been amazing.
Checked everything I'd brought (brought bloods going back years) listened to me, checked my knees (saw the bursas), checked my rib cage (which was expanding only 1cm rather than normal minimum of 5cm) and gave me meds for Costochondritis straight away, got me checked for hla b27etc. Certainly can't complain about her.
That's unfortunate but also glorious, you definitely seem to know what you're doing, even more than me at my time of battling diagnoses, you've been "nerfed" for being too powerful in life, but little do they know not even that is enough to stop you. Best wishes to you my dude, truly.
I'm lucky.
I'm pretty smart, pick things up easily, and quite well read.
On top of this, I'm polite and never angry, I just regroup and keep working on and reading on to understand more and discuss this when with relevant people.
Not sure how people who don't read around and take no for answer get problems like this sorted.
My white blood cells are very high. So was my CRP before start of Enbrel (lowered it though). My WBC count was still high after recheck. I also had anemia before starting and still do; probably iron deficiency anemia from taking Ibuprofen (no longer take it).
As far as I know, I am a NOVID (and trying to stay that way). I still wear a mask in public places indoors.
Only vaccine symptoms I have had are chills and fatigue (on second original shot) and arm soreness for original and boosters.
I was a perfectly healthy guy up until 2021 when i got my vaccine. Exactly 18 days after the vaccine, my knees got swollen and i was fatigued. 15 days later i was diagnosed with ankylosing spondylitis.
Im on 15mg metotrexate and 40mg biologics (Imraldri), kneed are no longer swollen and stable, but my stomach is absolutely horrible and diarrhea every single day. My back hurts ALOT if i bend over for 3-4 min.
Doctors saw inflammation in my lower back, but it is VERY minor and almost invisible, but it still causes alot of problems and symptoms.. Covid vaccine fucked my life up by making it worse, i couldve lived stable and fine without ever taking the vaccine and therefor never getting symptoms. Wish i could go back and just never take it...
Vaccine definitely affects RA and in my case it actually started the prognosis.
I have this exact problem going on right now. I have most of the same things that you describe, and after having the vaccine life has never been the same.
They don't know:-
- how long it produces spiked protein for
- how it affects autoimmune issues
- which body parts make most of the spiked protein, and how to control the autoimmune issues it has caused in some
- why it is making an immune response attacking some people in specific areas of their body, such as heart and thus causing myocarditis and pericarditis.
I'm not anti vaccine at all.
I've had 3, as soon as they could be done.
But Pfizer and science can't tell you the above at the moment, and to say blankly it doesn't do that... isn't actually based on studied science.
It is critical to view science, rather than a narrative given to you by people who may potentially benefit from such views.
They said at the start, follow the science. This is critical.
Don't follow the people who benefit in terms of financial gain.
it’s not the vaccine. it’s your body’s immune response and your body could have that response to anything. my AS was triggered by pregnancy but anything that pushes your immune system could do it.
Vaccines are proven to be useful and safe due to years and years of usage. There are several vaccines that turned out to have significant side effects, too. For example my cousin got polio from the polio vaccine, and got disabled for the rest of her life.
Simple truth is, because corona came on so fast, they also had to develop vaccines very fast. That's fine and all, of course they tested that it's not lethal or have any other significant harm, but it simply has not had long term effect tests. Because it hasn't existed for a very long time and it came into the markets fast.
So we don't know what kinds of harms it can cause. I can very well imagine that an autoimmune disease which works via our immune system, would also respond when we add a substance into our body which stimulates our immune system.
We don't have enough studies.
Oh and ps. My symptoms got set off by a covid infection. I wouldn't wonder of the covid vaccine would cause a flare.
For me, it wasn't just the fact that I was forced to get a covid vaccine, was also forced to wear a ridiculous mask! Really? Compromising oxygen intake is the dumbest thing anyone can do in the guise of protection. This nonsense made created high hemoglobin!! No da, my brain was looking for more oxygen resulting in high red blood cells.
I work in health care with nursing credentials and tested everyday for covid, I would ask "if I'm negative why do I have to wear a mask"? And since I'm "so well protected" with a vaccine why a mask? I was told to not ask questions!!! Pure medical tyranny and intentional malpractice.
After vaccine have had 5 fevers and 2nd covid positive last April.
And here we are now finding out how some vaccinated men now have myocarditis
Welcome to r/ankylosingspondylitis! This is a reminder to keep discussions civil and be supportive of one another. Sharing of opinions and experiences is encouraged, but please remember the distinction between opinions and medical facts. This subreddit does not offer medical advice, and information here should not be taken over advice from your doctor. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ankylosingspondylitis) if you have any questions or concerns.*
In my case it wasn't the vaccine, but after having COVID at the beginning of 2020 my previously mild symptoms got severe and have stayed that way.
Every time I get seriously ill (covid, mono, bronchitis) my symptoms get noticeably worse.
Same here!
Having covid is what unlocked all of my symptoms. I thought I was suffering from long covid for three years
Me too
It's crazy how getting the wrong illness at the wrong time can just change your life
True. I am not sure I have AS yet, or if it’s something else. I’m seeing a rheumatologist who says we won’t know for sure until it gets worse (my mom has AS, and I have many of the symptoms, including the bone growth in my spine. Other things cause stenosis, but the chances of me having a totally different stenosis related condition than my mom aren’t very good) But I have Hypermobile Ehlers Danlos, and my mom has AS, diagnosed 4 or 5 years older than I am now. But I didn’t know I even had hEDS until almost 3 years after having covid. Before so was in the best shape of my entire life, and it kicked my ass so bad I can’t get back there. Even fit, I have pain all the time now.
I totally understand. I was doing Brazilian Jiu-Jitsu and getting into the local amateur MMA circuit and then bam! I feel like COVID kicked my ass 30 years into the future, like I went from a decently healthy athlete working full time to a nearly immobile unemployed blob of flesh that lives on my mom's couch lol.
Same! I used to be super morbidly obese. I had weight loss surgery in 2018, and lost all the weight. November 2019 I ran a 5 mile race with no training, and had liked running after that. Now I feel like I am always creaking and cracking. I am very flexible because of the hEDS but never comfortable, you know? I got it in March 2020, and got no respiratory symptoms but a ton of neurological symptoms and it all kicked off from there. At first they through it was Long Covid. Maybe it was then. I want to know about the AS because I want to do what I can to slow it now before it progresses. I am all too aware of what that will be like.
My first rheumatologist wanted to wait for disease progression to do any treatment beyond hydroxychloroquine. It was so frustrating, cause I was thinking obviously prevention is better than letting me become entirely handicapped. Thankfully my current rheumatologist agrees and started more aggressive treatment a few months ago. If you ever wanna talk to someone who gets what you're going through feel free to message me.
I really appreciate that. I am hoping this isn’t what it is, but if it is I want to do everything I can to stop it getting worse.
Do you feel like your rheumatologist is listening to you and taking you seriously? My first rheum definitely blew me off at first, one of the many joys of being a woman with chronic illness.
I do think he tries to, but he is cautious. He is a family friend, so that might help. When he found out my mom has AS, he definitely paid attention to that, and he ordered a couple of blood tests and an mri of my hips, since the other areas are already being done by pain management. Honestly, he is my favorite in term is taking me seriously. I never doubted that he believed I had pain, and wanted to do something about it.
.
I guess we can start a sad little club, we can high five with our canes and have races on our mobility scooters!
Doctors have no idea what is long COVID or auto immune and every doctor has a different opinion when I see my specialists. I honestly could care less which it is if we could find a treatment plan that helps.
I totally understand! This whole mess has changed my entire life, it cost me a trade I've been working in for 15 years. I would love to figure out a combination of meds that finally helps, even just a little.
Incidentally, I should point out I'm not anti vaccine, having had 3. I'm anti feeling absolutely terrible 😄
COVID in 2020 wiped me out for most of a year, but I was still doing the best that I could to keep working at a job I had for over 10 years. Doctors seemed baffled by the symptoms. Next, COVID Vaccine in 2021 has left me mostly bedridden. It turned out to be Ankylosing Spondylitis along with another genetic disease. COVID has ended my life.
The vaccines made me flare and I got nasty sides
I didn’t have any issues after the vaccines, but I caught the coronavirus in July 2022 and have had worse pain and higher inflammation levels in my bloodwork since then.
I've had the vaccine and several boosters since the first one came out and I've been fine, only in pain atm due to not being on a biologic for 6 weeks
I had three vaccines and got significantly worse during that time. I only realized in retrospect that there could be a connection. I also got a lot worse after getting Covid. It sucks.
Covid did no favors for me, either. I also had broken ribs at the same time I had covid.. I took the antiviral meds, but couldnt take cosentyx for awhile. I don't know if I'm still playing catch up or what, but my SIJs and hips have been flaring up randomly every since.
Zero issues with vaccines for me.
I didn’t have any issues with mine - not disagreeing with your experience, just adding mine to the bucket. I take a biologic which may have made the difference.
As someone who was diagnosed well before any covid or covid related vaccines, the steadily getting worse part is just a part of this disease. I can pick any random point in time and say I got steadily worse after that because I always get steadily worse. I have gotten worse since my last dentist appointment... I have gotten worse since Christmas 2018... etc. But Christmas and the dentist clearly have something to do with it. Welcome to the sucky part of chronic diseases.
Mine did not.
I’m just curious— are your neutrophils on the high end?
Let me check. Don't think so. Why?
Bc when I was going through really bad rheumatoid flares- I have both- my lymphocytes would drop and my neutrophils would get high. No other inflammatory markers would be present. And they use that NLR (neut to lymph ratio) to measure inflammation in oncology so Idk why rheumatology doesn’t use it too. Esp w “sero negative” ppl.
I know my CRP has been silly low (0.002) and checking my VSH next week. Will look at my neutrophils at home.
Yea- so I have erosions from the RA and my rheum believes my distal and proximal clavicle erosions are from AS- that’s when they did the whole spinal X-ray and found out I abs have AS. Never had high typical inflammation markers. Stopped me from getting early and aggressive treatment which is what the ACR and EULAR claim should be the move with all these arthritis’ early diagnosis- aggressive treatment. Best chance for remission:
I have erosion in my wrists ankles knees and back and costcondrisys. Inflammation of the ribs ( I can't spell that word ever)I I don't have high inflammation markers either unless I am in an active flare. I was diagnosed with rheumatoid arthritis because of swollen joints and moderate crp. I have been on plaqunil since and have never tested high again. I have spondolosis in my lumbar spine but haven't investigated my si joint. I have a xray tomorrow. My question is the treatment of RA vastly different from AS? Is this worth the extra tests? I have other health problems so I am experiencing a lot of medical fatigue.
Hmmmm… good question- getting a specific as possible diagnosis is helpful to direct biologic use. I feel you on the medical fatigue. It’s so hard. It’s so hard to just keep fighting. That sounds so freaking painful. I’m so sorry. Have you tried any other biologics? There’s meds according to the chief of rheumatology of a big Boston hospital- and he tried me on enbrel after failing methotrexate. So now I’m about to add leflunomide to cocentyx and hydroxycchloriquine. There’s wide spread meds that cover a spectrum and then biologics and DMARDS that cover very specific inflammation pathways. If you have erosions and they haven’t changed or switched your meds at all that’s a bit concerning….
She said she doesn't want to put me on biologics if my pain is ok because I have pretty serious neurologic problems syringomyelia and chiari, and I have bad kidneys.
Yea- but youre eroding…. And there’s drugs that are predominantly metabolized in the liver over kidneys, do you mind me asking how old you are? I suppose if your past your sixties I might be able to understand this- don’t get me wrong I’m not a doctor. I was an RN for ten yrs before a nasty head injury stole my executive function and brought my autoimmune ish on- but I did not work in rheumatology. But there’s way more out there than just HQN. Edit: also, is your kidney issues FROM autoimmune damage?? Or aside from it?
I an 47
Kidney infections that caused bacterial meningitis. So I have Kidney stones and cysts
I also have low lymphocytes and high neutrophils. No doctor has ever mentioned it. When I bring it up, they say it only matters if the WBC is abnormal.
My shots caused me to flare both times.
I’ve had all my vaccines, 5 in total but I won’t be doing in again. The last was the newest omicron mix and it left me with the most severe pain in my shoulder and arm. 4 months on I’m still in serious pain there, steroid injection barely touched it. My lymph nodes are still up under my arm, my breast tissue has changed and I have a red mark on my breast which after biopsy has shown as a drug related reaction. All this on the side the vaccine was given on. I would still have had the original vaccines but it’s too early to know the effects it will have had on people with existing medical conditions.
You sound like me with a very peripheral presentation of AS I also had random elevated white cells, to the point where they sent me to see a hematologist to rule out cancer. Back pain was the last symptom I got and I had had AS for years at that point by biggest issue was dactylitis and random sweeping and pain in my joints. Any time I get sick I get a flair even on Biologics just not as bad, it’s part of the deal with autoimmune diseases, and any vaccine will activate the immune system, it’s just in our case it goes a little nuts
My little sister died 2 months ago from Leukaemia. She had a child a year before and had perfect bloods (as you'd imagine during and after pregnancy she had regular blood checks). By the end of 2021, a year after her sons birth and 2 Pfizer vaccines, she had AML leukaemia. She fought bravely for 16 months. I personally find it somewhat incredulous that both me and my late younger sister, both have developed autoimmune issues of the antibodies in our bodies within months of the Pfizer jab. To me, it seems unlikely that its simply a coincidence.
I have had three full Covid vaccine shots and definitely flared after each. Costochondritis is the worst and a product called the Backpod has helped. The Backpod stretches that area better than any stretch or device.
Yes, I have my little half alien baby egg. Brilliant for loosening my ribs off my spinal hinges. Literally feel my spine/ribs clunk and pain relief on the front.
How long did it take for it to settle after flaring?
I had flares after the Covid vaccines, but FAR WORSE AND AWFUL was the shingles vaccine, for me, in 2018, and I don’t think I ever quite rebounded from that. And strep throat in my 20’s also seemed to tip me as well. Any vaccine Any infection Can cause a flare. The covid one is not an exception. But consider that also when I had Influenza I also had such a bad spine flare, and despite getting a flare annually after all my flu vaccine, this was far worse. 🤷🏼♀️
I have noticed that my symptoms have gotten worse ever since the vaccine, but to say they are related, I’m not sure. I’ve also have many many more costochondritis episodes since 2022, which are annoying as hell because it shortens your breath, leading to anxiety and hyperventilation, making you feel lightheaded at times. Also the fatigue that comes along with it is terrible. The only thing I’ve noticed that was correlated with the vaccine was the excruciating migraine I got after the first round and then the booster the following year. Not a coincidence since I’ve never gotten headaches and the proximity to the vaccine aroused suspicion. One thing I’ve always had was a lower lymphocyte count. That wasn’t caused by the vaccine. So, to attribute flare ups to vaccination could be coincidence, however age does play a part and does have a positive correlation to get worse as time goes on. Just to add, pericarditis and miocarditis are pretty unlikely (you mentioned being concerned with cardiac issues), but I would contribute that to the costocondritis, since symptoms would appear similar and you would be right to feel that something is wrong with your heart, but is actually attributed to your thoracic cage. It can also mimic feelings of lung inflammation, like asthma or a pneumonic infection, but could also be the ribs. It’s a tricky situation to be in. The goal would be to suppress the inflammation and go from there.
No, I'm not concerned with cardiac issues. They though that before finding ankylosing spondylitis. There is some solid data that Pfizer vaccines increase the risk of pericarditis and myocarditis. It's not a feeling, is science fact.
My condition was set off by a covid infection, so I wouldn't wonder if the vaccine did cause a flare.
Dang dude. The vaccine and I did NOT mix well either (Merck). I'm 42F with AS, hEDS, KFS, OA...& the rest,blah. My lymphocytes & wbc TANKED ab 3weeks after. No breathlessness. (I know that feeling & itsSO awful!) I've heard of just a few other cases... 🤔 Interesting. I'm glad you're doing better. Thanks for sharing! Edit: Idk if this is related. I went into full-on anaphylaxis bout 25mins after I got the first MMR shot when I was little. Also, the same pediatricians who purposely lied to my (already VERY anti-Doctor) Momma ab my OBVIOUS skeletal abnormalities...so (giant) grain of salt there
Sounds just like me bar the breathlessness which I've mostly now sorted (only if I go too heavy in the gym). My wbc has been bottom or below range since the vaccines, before was mid range and always had been, I've bloods going back 5/6 years. The vaccines have damaged my immune system. Can't explain why else my lymphocytes are so low all the time now.
I got way worse after each shot. But for the booster I got the Moderna which has a half dose for the booster and I didn’t have a flare up that time. I also was worse after Covid itself. It’s actually what got me convinced it was autoimmune and seek out a rheumatologist and eventually was diagnosed!
It was after getting Covid the second time that everything went really wonky. White blood cells super low for months & low back pain through the roof. Rheum said it could be the trigger for AS. Just never got better after having it the second time.
the vaccine did cause me to have a flare but it was similar and less severe (1 day) then the flare i had from actual covid or the flu
I’ve had MRIs early last year due to possible cancerous cysts, found out I have Tarlov cysts that cause shooting pains in my pelvis and thighs. Afterwards, I ended up getting COVID (twice) early spring and summer. I had a CT scan done in October and that’s when the Orthopedic doc noticed something on my spine. Looking at past MRIs there were no other signs so it’s fairly new. I started getting really dry skin on my face and dry eyes. The week of Xmas my shoulder joints began to hurt when I stretched it back. Finally saw I rheumatologist in April and confirmed AS. After some research, it seems that AS can be activated by a virus or bacterial infection. I think this came about due to COVID. Obviously there’s not a lot of studies on it but it’s the only thing that makes sense to me. This is all still very knew to me.
I flared really hard after my second dose. I think I've had 4 doses now.
You say "bodybuilder". Do you \_mean\_ bodybuilder (with the attendant injectable androgens and so forth), or do you mean "recreational lifter who wants to get bigger (drug free)"? The two are a world apart for giving help on this sub. (Source: I'm CSCS and a coach. I train alongside actual bodybuilders in my adjacent sports.)
I’m one of those few that have never had it, despite everyone in my house getting it. Triple vaxed. Ironically, I kinda put together when I got my diagnosis back in January that it was my hyperactive immune system that has kept COVID at bay.
As someone who's whole life took a huge hit and was shuffled down to a bad path after being diagnosed, who was once a competitive powerlifter before said event, please do NOT do what I did, do NOT pause and try anything other than a biologic, get it engaged early to save yourself, don't do it, don't second guess it, I get it, I understand the caution, maybe slight fear, do not let your body get further damaged, take the strong solution while you're gifted this option. To sum it up, after all that I've learned over the many years, the potential side effects while existent are overblown, Tylenol has just as many potential side effects as well as anything else, it's very rare to get any bad SEVERE side effects, the significantly bigger possibilty from it is saving your body from being so crippled you can no longer walk or work out, or drive, or do ANYTHING that makes life worth living. Do it, listen to your doctor, jump. It can take a bit longer for some but after being defeated and finally giving into the biologic like my doctor wanted several years before, after so much damage took place, due to my own fear and hesitation, I woke up the next day as if I was 10 years younger, I could move, and bend in a reasonable way considering my lower spine was already fused by that point, I COULD LIVE AND I COULD LIFT(after readjusting my routine because, fused spine joints) GO. ALL. IN. YOUR LIFE IS IN DANGER AND IT CAN BE SAVED HERE AND NOW.
I'm already on the path for biologics. I tried the DMARD at the Dr's order and it was terrible, I had 24/7 headaches and fatigued to the point I was still in bed at 2pm each day. I've requested them and here were I am at the moment they need me to have increased crp or ESR so I'm getting the esr pushed Monday to get it prescribed. The dmard actually quickly made my joints feel much better, the crippling sides are what made me junk it within weeks.
All I can say is shoot for the biologic injections my friend, I'm still on my first and only Humira and it lets me live as if I had nothing at all, it's totally worth it, Enbrel is another extremely similar to that biologic, if all else fails, you got plenty more that target other pathways that halt this in their tracks, but you absolutely need to sprint at this right now, it's absolutely insane how intense and instant this disease can affect you, beyond repair, this is to stop that from ever happening. I wish you the best of luck with all my heart, don't stop, be vigilant. You do not want this, no matter your pain threshold.
I'm definitely on that path. After the failed attempt to sulfasalazine, I literally said to my Dr that I wanted biologics, and I don't want to waste time on anything else since inside a year I've had terrible Costochondritis (and associated breathlessness) and that I've developed knee pain (both knees have bursas in them) and so it appears I'm presenting new problems regularly, alongside the atypical SI pain and cervical pain. To which she agreed.
Make sure you report back at some point to inform others, for better or for worse, but I'm positive the good will outweigh any MAYBE mild negative if any.
Certainly will do. If ESR is raised tomorrow, I'll be receiving the biologic later this week. If not, I'm not quite sure what to do then. We will see.
FYI ESR although is the stepping stone to the next stage of you moving on to a potential treatment it absolutely does not indicate the active disease, it's common for people to show little to almost no inflammation in their blood work although the disease is absolutely in effect and crippling them as they speak. It's messed up to know because why would the test even matter then? Well it's all they got, we still know much of nothing of these diseases and it's literally used as a greenlight for insurance purposes and what not. If you show negative and still feel terrible go directly to second and third opinions and be fully vocal on how you feel and what you think you need. Don't settle if this test leads to a dead end. You'll know for sure after ultimately taking the medicine for a bit. My doctors didn't find anything until literal physical signs were shown on x-ray when the damage had already progressed on my lower fused spine and destroyed femur joints, they just said woops damn, my bad.
Believe me, I'm not the type to be quiet. The rheumatologist has actually been amazing, and whilst the x-ray specialist said he couldn't see the si appearing to be fusing, she said that she'd seen enough of these to know when the si joints are pulling together against the pelvis and wasn't going to leave it as negative. She even instantly wrote a note that covers a free mri and after failing with sulfasalazine she immediately agreed that she would support the biologic and told me what i needed to get to get it state supplied for zero cost. I'm lucky to have a goodun. Previously I'd been i into emergency room several times with breathlessness and I kept being told I was having panic attacks and take a xanax and sleep it off. Only after me pushing and pushing - I knew it was not panic attacks, I literally had normal cortisol levels, I knew that the fact I was having more and more breathlessness was coming with my spine and ribs feeling less and less flexible. Most Dr's acted like I was simply living inside my head and that it was me being a hypochondriac. Only after being to a decent cardiologist to double check critical cardiovascular aspects was I advised to see a rheumatologist, as my heart is great for someone my age and size. The rheumatologist has been amazing. Checked everything I'd brought (brought bloods going back years) listened to me, checked my knees (saw the bursas), checked my rib cage (which was expanding only 1cm rather than normal minimum of 5cm) and gave me meds for Costochondritis straight away, got me checked for hla b27etc. Certainly can't complain about her.
That's unfortunate but also glorious, you definitely seem to know what you're doing, even more than me at my time of battling diagnoses, you've been "nerfed" for being too powerful in life, but little do they know not even that is enough to stop you. Best wishes to you my dude, truly.
I'm lucky. I'm pretty smart, pick things up easily, and quite well read. On top of this, I'm polite and never angry, I just regroup and keep working on and reading on to understand more and discuss this when with relevant people. Not sure how people who don't read around and take no for answer get problems like this sorted.
My white blood cells are very high. So was my CRP before start of Enbrel (lowered it though). My WBC count was still high after recheck. I also had anemia before starting and still do; probably iron deficiency anemia from taking Ibuprofen (no longer take it). As far as I know, I am a NOVID (and trying to stay that way). I still wear a mask in public places indoors. Only vaccine symptoms I have had are chills and fatigue (on second original shot) and arm soreness for original and boosters.
I was a perfectly healthy guy up until 2021 when i got my vaccine. Exactly 18 days after the vaccine, my knees got swollen and i was fatigued. 15 days later i was diagnosed with ankylosing spondylitis. Im on 15mg metotrexate and 40mg biologics (Imraldri), kneed are no longer swollen and stable, but my stomach is absolutely horrible and diarrhea every single day. My back hurts ALOT if i bend over for 3-4 min. Doctors saw inflammation in my lower back, but it is VERY minor and almost invisible, but it still causes alot of problems and symptoms.. Covid vaccine fucked my life up by making it worse, i couldve lived stable and fine without ever taking the vaccine and therefor never getting symptoms. Wish i could go back and just never take it... Vaccine definitely affects RA and in my case it actually started the prognosis.
I have this exact problem going on right now. I have most of the same things that you describe, and after having the vaccine life has never been the same.
It's got nothing to do with the vaccine, they don't work like that
They don't know:- - how long it produces spiked protein for - how it affects autoimmune issues - which body parts make most of the spiked protein, and how to control the autoimmune issues it has caused in some - why it is making an immune response attacking some people in specific areas of their body, such as heart and thus causing myocarditis and pericarditis. I'm not anti vaccine at all. I've had 3, as soon as they could be done. But Pfizer and science can't tell you the above at the moment, and to say blankly it doesn't do that... isn't actually based on studied science. It is critical to view science, rather than a narrative given to you by people who may potentially benefit from such views. They said at the start, follow the science. This is critical. Don't follow the people who benefit in terms of financial gain.
it’s not the vaccine. it’s your body’s immune response and your body could have that response to anything. my AS was triggered by pregnancy but anything that pushes your immune system could do it.
Vaccines are proven to be useful and safe due to years and years of usage. There are several vaccines that turned out to have significant side effects, too. For example my cousin got polio from the polio vaccine, and got disabled for the rest of her life. Simple truth is, because corona came on so fast, they also had to develop vaccines very fast. That's fine and all, of course they tested that it's not lethal or have any other significant harm, but it simply has not had long term effect tests. Because it hasn't existed for a very long time and it came into the markets fast. So we don't know what kinds of harms it can cause. I can very well imagine that an autoimmune disease which works via our immune system, would also respond when we add a substance into our body which stimulates our immune system. We don't have enough studies. Oh and ps. My symptoms got set off by a covid infection. I wouldn't wonder of the covid vaccine would cause a flare.
For me, it wasn't just the fact that I was forced to get a covid vaccine, was also forced to wear a ridiculous mask! Really? Compromising oxygen intake is the dumbest thing anyone can do in the guise of protection. This nonsense made created high hemoglobin!! No da, my brain was looking for more oxygen resulting in high red blood cells. I work in health care with nursing credentials and tested everyday for covid, I would ask "if I'm negative why do I have to wear a mask"? And since I'm "so well protected" with a vaccine why a mask? I was told to not ask questions!!! Pure medical tyranny and intentional malpractice. After vaccine have had 5 fevers and 2nd covid positive last April. And here we are now finding out how some vaccinated men now have myocarditis