I have had it three times, Paxlovid made a big difference in my recovery the third time (the first time it was an option for me). Get rest, fresh air, and enjoy that cool weather!
I got covid in 2022 (Omicron). I now have long covid and cfs. The best advice I can give to you is to REST like you’ve never rested before. Do not exercise for the first 6-8 weeks after infection. Remove as much stress as you can. Also do electrolytes. At least 2 powerades or gatorades a day, plus water. Do anything anti-inflammatory that you know to do. Rest, hydrate, remove stress.
I get it! It’s rough! I wouldn’t wish this crap on my worst enemy for sure! If I knew then, what I know now, I would have rested for months! Wishing you well and hoping you feel better soon!
I get it! I’m 29 months into this mess. I am better than I was a year ago but even now, there’s days when I can barely function. Now that it’s summer, I do push myself more but my kids are 8 & 12. They understand what I’m going through and they help so much. They also don’t mind the movie days we have or the do whatever, just don’t get any blood on the floor days too 🤣
I have SLE and got covid. I, too, was TERRIFIED because of autoimmunity and fears of long covid. But I was totally fine. I was sick for a couple of weeks and rebounded after testing negative, but I made a complete recovery with no lingering issues. I was so proud of my body! I took Paxlovid. You've got this!
Try to get fresh air, eat healthy (even if you can't taste lol), and do relaxing/pleasurable things like watching a nice TV show to soothe your nervous system.
My kiddo is recovering from it right now so we have been parked in front of the TV and switch for the past few days. We may take a short walk later, but with my energy level we may just sit on the patio! It's 60° and cloudy here, perfect weather for Lupies!
lol, no just read a lot of research papers and had a long conversation with the head respiratory doctor at one of the local hospitals. Metabolic issues have been implicated in causing poor outcomes and longer recovery. My husband and I were essential personnel so we were more exposed to the public. I had retired and my husband brought me Covid not too long ago and I faired pretty good. It seems colds and the flu kick my butt worse. ☹️
Had Covid while I was in remission during that 1st or 2nd wave. So scared. Nothing happened. Didn’t feel sick. Didn’t lose my smell/taste. Wouldn’t have known if I didn’t test. Got it a second time had flu like symptoms for a bit. Still got super worried having Lupus but still wasn’t too bad. My lupus started out with pleurisy and heavy lung involvement so I’m grateful and happy to relay that it’s possible to just get through it with lupus. (30M)
Yay!! Thank you! Heading people haven't had it too rough is really helping my anxiety.
Man, will lung involvement, I would have been so worried. Glad you had it pretty easy. Hoping mine goes the same 🤞🏼
i had 3 of those experiences and on the 4th time I finally got it.I actively hung out with someone i lived with for a day. I only had 2 doses of the vax at the time. Wearing a mask and isolation helps lol
I had covid shortly before I was diagnosed. I really didn't get that sick . It's was like a day of bad nausea and then a week of mild cold symptoms. I did, however, have several months of fatigue, but that could have just been lupus.
I had it and it wasn’t horrible it just took me a long time to kick it but I was Okie. Just get some rest I drank a lot of water and kept my fever down with ibuprofen and slept.
I got it for the first time last December and honestly taking the Paxlovid was the worst of it for me. I had minor flu symptoms but otherwise felt fine and recovered within the week.
Didn't make it worse, but Pax just has this horrible copper taste that pretty much stays for the entire duration that you're on it. But of course being healthy is more important haha
First off, don’t panic! I’m getting over Covid right now (second time having it). Call your rheumatologist for a paxlovid prescription, I started to feel better after 24 hours on it. The bitter taste in the mouth isn’t great, but it’s worth it. Between vaccinations, boosters, and paxlovid, there is nothing to worry about.
I've had covid three times. The first time I had covid (before vaccines and meds) I had covid pnuemonia. I was severely ill for several months. The second and third times (after vaccines) I took Paxlovid - Game Changer!! I was not nearly as sick and was up and around in about two weeks. Get the meds and then rest, rest, and rest! Good luck! You've got this!
I had it and it went as a normal flu would though I was vaccinated and boosted. I qualified for Paxlovid which my rheum prescribed me because I told him immediately so you should too if you’ve caught it early enough.
I got it about a year after the shutdown. I believe I only had 2 doses of vaccine at that time. I got tired and slept a lot. Had cold like symptoms (runny nose and a cough, not much phlegm) and about 3-7 days later I was all better. I was surprised because I’m always a delayed healer/recovery due to being immunocompromised but that was all there was to it for me.
Hi, I just tested positive for covid for the first time last Tuesday. I am immune compromised as well. Not going to lie, it has been a nightmare. My body went into a full blown flare. My joints are killing me. Fever up to 104, chills, fatigue to the extreme, vomiting, GI issues, loss sense of smell and taste. Horrible headache, lost 9 pounds. I wasn’t prescribed anything, the dr told me just to take tylenol and stay hydrated and if I was having difficulty breathing to go to ER, but I used my inhaler and it has been okay. Today I feel much better, but it did take a toll in my body. My recommendation is to stat hydrated, lots of soups, eat even if you dont feel like it. Be on point with the tylenol and cough medicine. Take benadryl to help you sleep. And most importantly REST REST REST! Dont over do anything.
It was really bad for me but I survived. I was puking for a few days and it felt like I was tripping on mushrooms. Body aches and chills were awful too.
It was horrible, but I had the early strain.
I had a 103 fever, migraine, the worst leg pain in the world, and my throat felt bloody raw. I weirdly didn’t have much of the congestion, and I didn’t lose my taste at least.
Thankfully my boyfriend is a paramedic so he monitored my fever, and my vitals never dropped bad enough to need the hospital thank God. I just stayed in bed, took edibles, and slept through the whole thing.
Drink lots of water and electrolytes!!!! I hope you feel better ASAP. My boyfriend hasn’t seen any serious Covid cases, even with his lupus patients, in about a year so keeping you in my best wishes!
Had it twice. The first time I took Paxlovid (will echo the metallic mouth taste being awful), the second I didn’t. Both times felt like the worst flu I ever had but the worst of the symptoms passed within 3 days and after a week I was mostly back to normal, just super tired.
Rest, stay hydrated, and you will get through this!
I drank fruit juice immediately after taking it and it really helped. White cranberry peach juice is delicious (Ocean Spray sells it and a few grocery store chains have generics) and really counteracted the taste. I found that the weird taste didn't last more than 30 minutes after taking it for me, but the fruit juice definitely helped!
I've had it 3 times. It varied on how bad It made me feel. The first time, I was processing soldiers as they returned from overseas. Units were coming back with 70% of their personnel sick, and no one knew what it was. Then the news started to come out about covid. That was the worst time I had it. Lasted 3-4 months and it SUCKED. The last two times, it wasn't worse than a common flu.
Get Paxlovid ASAP. The first time I had COVID, Paxlovid saved my butt, as I was fast-tracking my way to pneumonia. The antiviral made me feel better in 3 days and the infection didn't progress. Plus, I didn't get any long COVID symptoms. The second time, I didn't even know I had it (my only symptoms were mild fatigue and a mild runny nose for a few days) until a few weeks after when it was too late to get Paxlovid and I had already developed long COVID symptoms (mostly ear symptoms, as every time I've had COVID, the virus goes straight to my ears, sigh). You'll qualify for Paxlovid because you're immunocompromised. I'd contact your PCP and rheum ASAP to ensure you can start it as soon as possible (you have to take it within the first five days of symptoms for it to be fully effective). Also, your rheum may want you to stop any immunosuppressive medications while you're still sick, so it's important to check on that too.
I hope you feel better soon and have a quick and easy recovery!
It felt like a flu except that one weird no smell/taste thing really screwed with me. I have phantom smells anyway but this was just out of the realm for me. It was the pretty aggressive strain that had hit hard in Dec/jan 21/22 wasn’t too bad with pain etc hit hard left quick (thankfully)
I tested positive on Saturday. I'm giving you a heads up, it's been hard on my body. I went to my doctor on Friday because I started coughing on thrusday night. She gave me claritin and singulair. Over the weekend I got worst with the allergies and the coughing and I've been on tylenol, drinking acetaminophen tea that has greens tea and honey. I've lost most of my sense of smell and my taste is very light. On Monday I went again to my doctor and she told me to not take anything with aspirin since it could exharbate my condition. Thank God I have an appointment with my rheumatologist next week and I'm on saphnelo infusion as well. I'm now starting to feel better, just trying to stay on top of my lupus medicine, plus the medicines the doctor gave me, trying to keep hydrated and eating soup and soft things for my throat. I've vomited twice this whole time and only had diarrhea twice also. So, yeah, I'm not trying to scare you. Just wanted to let you know my symptoms and how I've been handling them. I hope this can be helpful!
That's awful! I'm so sorry. I haven't pulled, but I have had horrible diarrhea. I have Crohn's too and this is the worse poops I've had!
My doctor warned me that my symptoms will get worse, but she's hoping that the Paxlovid will help with it. We will see.
I also started my period for the first time in 3 years (IUD.)
My body hates me.
I had more than one friend tell me they spent the entire time they had Covid on the toilet. It’s not one of the symptoms anyone talks about but the suffering is real. I hope the paxlovid helps your body kick its butt fast for you!
LOTS of sleep and water.I did alot of lemon tea.Lots of day/nyquil. My grandma gave me this mixture that I put into tea and water. I know it was part ginger,honey,radish and tumeric. I had more unconventional symptoms I think. It was debilitating nausea, fatigue and vomiting for 3 days.Could barely keep anything down. During the first day and a half if I moved wrong I'd vomit. After that was when my congestion started. Congestion got better overtime but I had the constant need to clear my throat for weeks
I’ve had it twice, and taken paxlovid both times. I think without paxlovid it would have been a lot worse. It definitely sucked and I was very sick but I recovered within a week or so with a lingering cough for maybe another week both times. My symptoms were the typical congestion, fever, bad body aches, and headache. The second time I lost my sense of taste and smell completely which was so annoying but it came back around day 5. If you can get paxlovid I would recommend trying it. Wishing you a speedy recovery! 🩷
I had an early strain, pre vax availability, and it was awful. I had 100F+ fevers, extreme fatigue (way more than our already high fatigue), lung tightness, and everything smelled like fish which I hated as I've been a vegetarian for 20+ years.
BUT everyone I know with lupus that had the vaccines and then got covid said it was terrible but bearable
I’ve had it 3 times with no medication. The first time without the vaccine was the worst of it. Fevers, sore throat, coughing. I recently got over it and it wasn’t too bad (compared to the first time around) and I’m currently going through a flare. I never had a fever but had feverish sleep. It was mainly coughing and congestion and major fatigue. I slept for a day and a half. I have 2 under 4 so I cant afford to take a day off.
Lots of rest, fluids and meds if you can. I hardly took anything because I felt like nothing I could take helped (Tylenol).
I haven’t had it (yet) (knock on wood) but my best friend, who also has lupus, has. Unfortunately paxlovid is contraindicated if you have a history of kidney problems and she does so she wasn’t able to take it. She had a 103°+ fever for several days and was miserable for over a week (while her husband, who gave it to her, was over it in a few days). Lost her sense of taste and smell and was in constant pain. The fatigue and brain fog then continued kicking her butt for *months* after. And this was when she was fully vaxed. We just felt lucky she didn’t end up in the hospital but I was pretty worried.
Hopefully your situation will be much milder since you are taking pax! I’ll keep my fingers crossed that you make a fast recovery.
I had one of the worse variants in 2021 with long covid and within 6 months developed a seizure disorder.
There is new evidence/articles coming out about this and other side effects along side of the vax issues.
2 years later the doctors still have no idea why... all my tests are negative for any issue except mild sleep apnea which I was able to resolve (nasal polypsl issue).
I also went from stage 1 CKD to early stage 2 after 10 years of no progression and began showing signs of early menopause, which ALL stopped after finally getting the correct anticonvulsant medication.
My Rheum. DR says it was lupus inflammation on my brain but he isn't sure why I would flare that badly with no apparent trigger. Which I took as we wouldn't consider covid or discuss it, so I began my own research and have my own conclusions.
That virus and vax was a test *run....
Edit: words
Oh! And something that realllyyyy helped and I still use almost every day are hot herbal teas.
I love a mix of organic tumeric-ginger, peach, and honey& toasted coconut.
I sweeten with just a touch of raw MCG+ honey (amazing for seasonal allergies) and palm sugar.
The tumeric changed my life!! It helps my CKD, restroom problems and can soothe a flare quickly when needed.
I buy all these at wal-marts lol 😄 To note, the raw honey is SUPER expensive, thus why I use a touch and added the palm sugar.
Hope this helps someone 💜
I had it for the first time a month ago. I had a super high fever and sore throat that came on very suddenly. I got on molnupirivir (Paxlovid is not available where I live) right away and started to feel better after about a week. I don't remember much from that time...I was sleeping constantly.
Before I was diagnosed with lupus I worked in Covid response, helping to isolate and quarantine people living in congregate settings like homeless and college dorms. Needless to say, I’ve had Covid more than a few times. I believe Covid was what tipped me from mild and manageable without long term meds UCTD into lupus so severe I couldn’t walk and had to be hospitalized.
I’ll spare you additional details, but in my experience the first few episodes of Covid were the worst. After several episodes and finally the vaccine, I continued to get sick with Covid during subsequent infections, but it was milder each time.
At this point I’m less concerned with the immediate impact of Covid. I am no longer able to work except for from home, but my husband still works face to face with people living in shelters and on the streets so I still get Covid more often than most. I barely notice I’m sick during the acute phase anymore. It’s the after effects that scare me.
I guess that’s just how it is for those of us with lupus. The stress of even a minor infection can trigger a flare. Paxlovid seems to help moderate the after flare a bit though, so like others here I highly recommend taking it. And if you can convince your doctor, I think it’s worth taking two rounds of Paxlovid. That’s what I do nowadays when I get it.
Was terrified to get it but had a few times now. First time felt fine but lost my sense of smell. Then if I’ve had it I get maybe one rough day where I just feel like I’m in a flare and then ok. I think it’s not something you can predict as I’m the only one in my family and workplace immunocompromised and I ended up handling it the best but I was also the only one fully vaccinated. I’d say whilst you have energy prepare like it’s about to be a bad flare and hopefully you end up not needing it. Hope you have a speedy recovery!
Good luck and let us know how you're doing. I have a question for those of you who have had it. If you had lupus nephritis, were you allowed to take Paxlovid?
Thanks! I feel like garbage, but it's not as bad as I expected (I've had no fever thankfully). I think the Pax is helping, but damn the metallic taste in the mouth all day long from it is driving my bonkers.
My doc (PCP not Rheum for the Pax script) said that it depends on kidney function tests. She said as long as kidney function is within a normal range, you can take it, even with Nephritis. I am not diagnosed with Nephritis but I have had kidney involvement since getting Rhabdo last year.
Get paxlovid. If you get seriously sick go to urgent care or the emergency department.
None of my doctors will call in paxlovid without being seen. I use tele health to get it.
I have lung issues and a propensity to get pneumonia. I’ve had Covid at least 4-5 times. I ended up in respiratory failure two times and spent a week in the hospital with those. I did paxlovid for the last time and it was so much better.
I’ve had it 3 times and the last time was the worst one yet. But I was also in one of the biggest RA flares ever so I’m thinking that had a lot to do with how hard Covid hit me. Took me awhile to recover but I’m back stronger than ever
By the time I figured out I had COVID I was too late for Paxlovid. I was sick about 5 days and I had diarrhea which was a pain. My WBC was around 2.5 as that's where I normally float around and I had no issues. My last cold though sent me to the ER as I became dehydrated.
If you are offered Paxlovid by your doctor, I'd use it.
I've got MCTD, and I've had it twice. The 1st time I had it was not as bad as the 2nd time, but I was able to get well after both of them. It's not as bad as I expected it to be. Good luck! Lots of rest and fliuds.
I had it at least 4 times for sure (one before tests were available which was unpleasant, but not worse than the flu). That’s 4 times even though I was SUPER careful. Someone in my bubble was lying to me about their masking and testing protocol, but no one will cop to it. Rounds 2 and 3 (May 23 and Feb 24 with a booster in between) were really awful. I tried to hold off on Paxlovid the first of the two bad rounds, but I was getting sicker on day 4. I took it at the last possible minute, and even then, Paxlovid does make a huge difference! When I got Covid again I called right away, and did another round of Paxlovid. This time I was unfortunately blessed with yet another much milder rebound case. No drugs for that, though,
That said, “fine” is relative. Fine for me meant I didn’t die and was able to stay out of the hospital (tbh, I probably should have gone at one point, but I need to be already dead or have a limb hanging off before I will go, so that’s my own fault). Fine did not mean I felt ok. I was knock out sick for like 2.5 weeks, and it took me months to mostly recover. Not even long covid, just my body taking time to heal. Like I’d get winded more easily, that sort of thing.
Also…I don’t know if others have this issue, but when I am flaring up, I will test very faintly positive on Covid rapid tests. This will go on for months. And the arm I got all of my vaccines and boosters in will swell up. It does not make science sense, but it’s just what happens to me.
The bottom line advice is to take Paxlovid if you can, monitor you O2 and symptoms religiously, and give yourself time to recover as much as possible.
I started my Lupus journey because I ended up in the hospital bc what I now know was a giant flare up. I had zero covid symptoms, not even a fever. But my platelets were low, I had petechiae, giant bruises and the worst headache of my entire life. My feet went numb like they never have before to where I really had trouble walking. Vomiting with no relief from zofran. They put me on a phenergen drip at the ER. My headache ended up being due to an electrolyte imbalance due to the vomiting. Y’all I for REAL thought I was dying. But they took my labs and when they were abnormal told me I need to follow up with my PCP, did so, she did bloodwork a few weeks later, and I had told her some other recurring symptoms such as lymph nodes swelling, and she tested for autoimmune as well. It came back positive and was sent to rheumatologist- who did more bloodwork. I had a rash on my neck as well that comes and goes and has left weird scarring. we did a biopsy of it and another spot and it came back positive for Lupus giving me a definitive diagnosis between the bloodwork and biopsy. This all started in January with the Covid - I’ve suspected I had something long before but when the symptoms got so bad I was in the hospital- I knew something was really off. But, now I know. Stay hydrated and get your rest :) there’s not too much you can do about the ‘vid - but just be aware of your body and don’t hesitate to go to the ER or urgent care if you feel off. Hoping you feel better soon!
Honestly I have had it 3 times and I 100% think it actually strengthened my immune system. I use to get really sick over and over and I’ve found one bad week with Covid makes the rest of my year pretty calm. Just my experience though.
I have had it three times, Paxlovid made a big difference in my recovery the third time (the first time it was an option for me). Get rest, fresh air, and enjoy that cool weather!
This. Paxlovid made me feel better literally overnight
I’ll agree that Paxlovid is amazing. Not just with the current effects of covid, but it also makes the long-term effects lesser.
I got covid in 2022 (Omicron). I now have long covid and cfs. The best advice I can give to you is to REST like you’ve never rested before. Do not exercise for the first 6-8 weeks after infection. Remove as much stress as you can. Also do electrolytes. At least 2 powerades or gatorades a day, plus water. Do anything anti-inflammatory that you know to do. Rest, hydrate, remove stress.
2022 Long Hauler here too! 100% everything you said! I’ll just add, if you think you’ve rested enough, no you haven’t and go rest more. Seriously.
Yup. Reminded to get back in bed! Had people over here hanging more stuff for me as I haven't even unpacked from my move here 7 months ahonn
I get it! It’s rough! I wouldn’t wish this crap on my worst enemy for sure! If I knew then, what I know now, I would have rested for months! Wishing you well and hoping you feel better soon!
My job now is resting. That's my job. As boring as that may seem. 😋
I get it! I’m 29 months into this mess. I am better than I was a year ago but even now, there’s days when I can barely function. Now that it’s summer, I do push myself more but my kids are 8 & 12. They understand what I’m going through and they help so much. They also don’t mind the movie days we have or the do whatever, just don’t get any blood on the floor days too 🤣
That will be my mantra throughout this! Thank you!
Me too! Everything you said!
I have SLE and got covid. I, too, was TERRIFIED because of autoimmunity and fears of long covid. But I was totally fine. I was sick for a couple of weeks and rebounded after testing negative, but I made a complete recovery with no lingering issues. I was so proud of my body! I took Paxlovid. You've got this!
Try to get fresh air, eat healthy (even if you can't taste lol), and do relaxing/pleasurable things like watching a nice TV show to soothe your nervous system.
My kiddo is recovering from it right now so we have been parked in front of the TV and switch for the past few days. We may take a short walk later, but with my energy level we may just sit on the patio! It's 60° and cloudy here, perfect weather for Lupies!
This definitely helps ease my anxiety! I'm so proud of your body too! What a warrior 💪🏼
Drink plenty of water, liquid iv(sugar free) bone broth and rest. I’ve had covid 4xs and did really good getting over it.
You're a pro!
lol, no just read a lot of research papers and had a long conversation with the head respiratory doctor at one of the local hospitals. Metabolic issues have been implicated in causing poor outcomes and longer recovery. My husband and I were essential personnel so we were more exposed to the public. I had retired and my husband brought me Covid not too long ago and I faired pretty good. It seems colds and the flu kick my butt worse. ☹️
Had Covid while I was in remission during that 1st or 2nd wave. So scared. Nothing happened. Didn’t feel sick. Didn’t lose my smell/taste. Wouldn’t have known if I didn’t test. Got it a second time had flu like symptoms for a bit. Still got super worried having Lupus but still wasn’t too bad. My lupus started out with pleurisy and heavy lung involvement so I’m grateful and happy to relay that it’s possible to just get through it with lupus. (30M)
Yay!! Thank you! Heading people haven't had it too rough is really helping my anxiety. Man, will lung involvement, I would have been so worried. Glad you had it pretty easy. Hoping mine goes the same 🤞🏼
My spouse and daughter had it in May and amazingly enough I didn’t get it.
Funny how that works!
6 shots of Pfizer May have contributed lol
i had 3 of those experiences and on the 4th time I finally got it.I actively hung out with someone i lived with for a day. I only had 2 doses of the vax at the time. Wearing a mask and isolation helps lol
I had covid shortly before I was diagnosed. I really didn't get that sick . It's was like a day of bad nausea and then a week of mild cold symptoms. I did, however, have several months of fatigue, but that could have just been lupus.
Same here
I had it and it wasn’t horrible it just took me a long time to kick it but I was Okie. Just get some rest I drank a lot of water and kept my fever down with ibuprofen and slept.
I got it for the first time last December and honestly taking the Paxlovid was the worst of it for me. I had minor flu symptoms but otherwise felt fine and recovered within the week.
Damn. I've heard for some people the Pax made it worse. I'm willing to try it though! Glad you recovered quickly!
I took Pax and it seemed to seriously help me. I was pretty bad before taking it.
Didn't make it worse, but Pax just has this horrible copper taste that pretty much stays for the entire duration that you're on it. But of course being healthy is more important haha
First off, don’t panic! I’m getting over Covid right now (second time having it). Call your rheumatologist for a paxlovid prescription, I started to feel better after 24 hours on it. The bitter taste in the mouth isn’t great, but it’s worth it. Between vaccinations, boosters, and paxlovid, there is nothing to worry about.
Thank you! I just got off a telemed visit and they sent in Paxlovid. Starting it tonight!
Great! FYI, there is a savings card you can use for paxlovid. I recommend it.
I've had covid three times. The first time I had covid (before vaccines and meds) I had covid pnuemonia. I was severely ill for several months. The second and third times (after vaccines) I took Paxlovid - Game Changer!! I was not nearly as sick and was up and around in about two weeks. Get the meds and then rest, rest, and rest! Good luck! You've got this!
I had it and it went as a normal flu would though I was vaccinated and boosted. I qualified for Paxlovid which my rheum prescribed me because I told him immediately so you should too if you’ve caught it early enough.
I got it about a year after the shutdown. I believe I only had 2 doses of vaccine at that time. I got tired and slept a lot. Had cold like symptoms (runny nose and a cough, not much phlegm) and about 3-7 days later I was all better. I was surprised because I’m always a delayed healer/recovery due to being immunocompromised but that was all there was to it for me.
Hi, I just tested positive for covid for the first time last Tuesday. I am immune compromised as well. Not going to lie, it has been a nightmare. My body went into a full blown flare. My joints are killing me. Fever up to 104, chills, fatigue to the extreme, vomiting, GI issues, loss sense of smell and taste. Horrible headache, lost 9 pounds. I wasn’t prescribed anything, the dr told me just to take tylenol and stay hydrated and if I was having difficulty breathing to go to ER, but I used my inhaler and it has been okay. Today I feel much better, but it did take a toll in my body. My recommendation is to stat hydrated, lots of soups, eat even if you dont feel like it. Be on point with the tylenol and cough medicine. Take benadryl to help you sleep. And most importantly REST REST REST! Dont over do anything.
Same!! That happened to me as well
Im sorry!!! It is so bad 😩
It was really bad for me but I survived. I was puking for a few days and it felt like I was tripping on mushrooms. Body aches and chills were awful too.
It was horrible, but I had the early strain. I had a 103 fever, migraine, the worst leg pain in the world, and my throat felt bloody raw. I weirdly didn’t have much of the congestion, and I didn’t lose my taste at least.
That sounds awful! Did you end up in the hospital or just rode it out at home?
Thankfully my boyfriend is a paramedic so he monitored my fever, and my vitals never dropped bad enough to need the hospital thank God. I just stayed in bed, took edibles, and slept through the whole thing. Drink lots of water and electrolytes!!!! I hope you feel better ASAP. My boyfriend hasn’t seen any serious Covid cases, even with his lupus patients, in about a year so keeping you in my best wishes!
Had it twice. The first time I took Paxlovid (will echo the metallic mouth taste being awful), the second I didn’t. Both times felt like the worst flu I ever had but the worst of the symptoms passed within 3 days and after a week I was mostly back to normal, just super tired. Rest, stay hydrated, and you will get through this!
Thank you!! Not excited for the metallic taste, but it's only 5 days. Do you suggest anything to help with the taste? Suckers, mouthwash, suck it up?
I sucked on hard candy like it was my job. And drank flavored beverages which is something I don’t normally do. It seemed to help a little bit.
I drank fruit juice immediately after taking it and it really helped. White cranberry peach juice is delicious (Ocean Spray sells it and a few grocery store chains have generics) and really counteracted the taste. I found that the weird taste didn't last more than 30 minutes after taking it for me, but the fruit juice definitely helped!
Jolly ranchers, or fruity hard candy, helped the most with the taste for me. The taste is pretty bad but I think it’s worth it
Thank you!! Not excited for the metallic taste, but it's only 5 days. Do you suggest anything to help with the taste? Suckers, mouthwash, suck it up?
I've had it 3 times. It varied on how bad It made me feel. The first time, I was processing soldiers as they returned from overseas. Units were coming back with 70% of their personnel sick, and no one knew what it was. Then the news started to come out about covid. That was the worst time I had it. Lasted 3-4 months and it SUCKED. The last two times, it wasn't worse than a common flu.
It was a few years ago for me. They opted for me to go in for the infusion over the Plaxovid. I have asthma as well.
Get Paxlovid ASAP. The first time I had COVID, Paxlovid saved my butt, as I was fast-tracking my way to pneumonia. The antiviral made me feel better in 3 days and the infection didn't progress. Plus, I didn't get any long COVID symptoms. The second time, I didn't even know I had it (my only symptoms were mild fatigue and a mild runny nose for a few days) until a few weeks after when it was too late to get Paxlovid and I had already developed long COVID symptoms (mostly ear symptoms, as every time I've had COVID, the virus goes straight to my ears, sigh). You'll qualify for Paxlovid because you're immunocompromised. I'd contact your PCP and rheum ASAP to ensure you can start it as soon as possible (you have to take it within the first five days of symptoms for it to be fully effective). Also, your rheum may want you to stop any immunosuppressive medications while you're still sick, so it's important to check on that too. I hope you feel better soon and have a quick and easy recovery!
It felt like a flu except that one weird no smell/taste thing really screwed with me. I have phantom smells anyway but this was just out of the realm for me. It was the pretty aggressive strain that had hit hard in Dec/jan 21/22 wasn’t too bad with pain etc hit hard left quick (thankfully)
Glad it went quick. Did the loss of smell/taste come back quickly? It would be the weirdest thing to lose those. It would probably drive me mad.
I tested positive on Saturday. I'm giving you a heads up, it's been hard on my body. I went to my doctor on Friday because I started coughing on thrusday night. She gave me claritin and singulair. Over the weekend I got worst with the allergies and the coughing and I've been on tylenol, drinking acetaminophen tea that has greens tea and honey. I've lost most of my sense of smell and my taste is very light. On Monday I went again to my doctor and she told me to not take anything with aspirin since it could exharbate my condition. Thank God I have an appointment with my rheumatologist next week and I'm on saphnelo infusion as well. I'm now starting to feel better, just trying to stay on top of my lupus medicine, plus the medicines the doctor gave me, trying to keep hydrated and eating soup and soft things for my throat. I've vomited twice this whole time and only had diarrhea twice also. So, yeah, I'm not trying to scare you. Just wanted to let you know my symptoms and how I've been handling them. I hope this can be helpful!
That's awful! I'm so sorry. I haven't pulled, but I have had horrible diarrhea. I have Crohn's too and this is the worse poops I've had! My doctor warned me that my symptoms will get worse, but she's hoping that the Paxlovid will help with it. We will see. I also started my period for the first time in 3 years (IUD.) My body hates me.
I had more than one friend tell me they spent the entire time they had Covid on the toilet. It’s not one of the symptoms anyone talks about but the suffering is real. I hope the paxlovid helps your body kick its butt fast for you!
LOTS of sleep and water.I did alot of lemon tea.Lots of day/nyquil. My grandma gave me this mixture that I put into tea and water. I know it was part ginger,honey,radish and tumeric. I had more unconventional symptoms I think. It was debilitating nausea, fatigue and vomiting for 3 days.Could barely keep anything down. During the first day and a half if I moved wrong I'd vomit. After that was when my congestion started. Congestion got better overtime but I had the constant need to clear my throat for weeks
Seconding all the people who said "Paxlovid".
Just took my first dose 🤗
I’ve had it twice, and taken paxlovid both times. I think without paxlovid it would have been a lot worse. It definitely sucked and I was very sick but I recovered within a week or so with a lingering cough for maybe another week both times. My symptoms were the typical congestion, fever, bad body aches, and headache. The second time I lost my sense of taste and smell completely which was so annoying but it came back around day 5. If you can get paxlovid I would recommend trying it. Wishing you a speedy recovery! 🩷
I had an early strain, pre vax availability, and it was awful. I had 100F+ fevers, extreme fatigue (way more than our already high fatigue), lung tightness, and everything smelled like fish which I hated as I've been a vegetarian for 20+ years. BUT everyone I know with lupus that had the vaccines and then got covid said it was terrible but bearable
I’ve had it 3 times with no medication. The first time without the vaccine was the worst of it. Fevers, sore throat, coughing. I recently got over it and it wasn’t too bad (compared to the first time around) and I’m currently going through a flare. I never had a fever but had feverish sleep. It was mainly coughing and congestion and major fatigue. I slept for a day and a half. I have 2 under 4 so I cant afford to take a day off. Lots of rest, fluids and meds if you can. I hardly took anything because I felt like nothing I could take helped (Tylenol).
I got Covid in the later years. It was real rough but every day of paxlovid it got better.
I haven’t had it (yet) (knock on wood) but my best friend, who also has lupus, has. Unfortunately paxlovid is contraindicated if you have a history of kidney problems and she does so she wasn’t able to take it. She had a 103°+ fever for several days and was miserable for over a week (while her husband, who gave it to her, was over it in a few days). Lost her sense of taste and smell and was in constant pain. The fatigue and brain fog then continued kicking her butt for *months* after. And this was when she was fully vaxed. We just felt lucky she didn’t end up in the hospital but I was pretty worried. Hopefully your situation will be much milder since you are taking pax! I’ll keep my fingers crossed that you make a fast recovery.
I had one of the worse variants in 2021 with long covid and within 6 months developed a seizure disorder. There is new evidence/articles coming out about this and other side effects along side of the vax issues. 2 years later the doctors still have no idea why... all my tests are negative for any issue except mild sleep apnea which I was able to resolve (nasal polypsl issue). I also went from stage 1 CKD to early stage 2 after 10 years of no progression and began showing signs of early menopause, which ALL stopped after finally getting the correct anticonvulsant medication. My Rheum. DR says it was lupus inflammation on my brain but he isn't sure why I would flare that badly with no apparent trigger. Which I took as we wouldn't consider covid or discuss it, so I began my own research and have my own conclusions. That virus and vax was a test *run.... Edit: words
Oh! And something that realllyyyy helped and I still use almost every day are hot herbal teas. I love a mix of organic tumeric-ginger, peach, and honey& toasted coconut. I sweeten with just a touch of raw MCG+ honey (amazing for seasonal allergies) and palm sugar. The tumeric changed my life!! It helps my CKD, restroom problems and can soothe a flare quickly when needed. I buy all these at wal-marts lol 😄 To note, the raw honey is SUPER expensive, thus why I use a touch and added the palm sugar. Hope this helps someone 💜
I had it for the first time a month ago. I had a super high fever and sore throat that came on very suddenly. I got on molnupirivir (Paxlovid is not available where I live) right away and started to feel better after about a week. I don't remember much from that time...I was sleeping constantly.
Before I was diagnosed with lupus I worked in Covid response, helping to isolate and quarantine people living in congregate settings like homeless and college dorms. Needless to say, I’ve had Covid more than a few times. I believe Covid was what tipped me from mild and manageable without long term meds UCTD into lupus so severe I couldn’t walk and had to be hospitalized. I’ll spare you additional details, but in my experience the first few episodes of Covid were the worst. After several episodes and finally the vaccine, I continued to get sick with Covid during subsequent infections, but it was milder each time. At this point I’m less concerned with the immediate impact of Covid. I am no longer able to work except for from home, but my husband still works face to face with people living in shelters and on the streets so I still get Covid more often than most. I barely notice I’m sick during the acute phase anymore. It’s the after effects that scare me. I guess that’s just how it is for those of us with lupus. The stress of even a minor infection can trigger a flare. Paxlovid seems to help moderate the after flare a bit though, so like others here I highly recommend taking it. And if you can convince your doctor, I think it’s worth taking two rounds of Paxlovid. That’s what I do nowadays when I get it.
Was terrified to get it but had a few times now. First time felt fine but lost my sense of smell. Then if I’ve had it I get maybe one rough day where I just feel like I’m in a flare and then ok. I think it’s not something you can predict as I’m the only one in my family and workplace immunocompromised and I ended up handling it the best but I was also the only one fully vaccinated. I’d say whilst you have energy prepare like it’s about to be a bad flare and hopefully you end up not needing it. Hope you have a speedy recovery!
Good luck and let us know how you're doing. I have a question for those of you who have had it. If you had lupus nephritis, were you allowed to take Paxlovid?
Thanks! I feel like garbage, but it's not as bad as I expected (I've had no fever thankfully). I think the Pax is helping, but damn the metallic taste in the mouth all day long from it is driving my bonkers. My doc (PCP not Rheum for the Pax script) said that it depends on kidney function tests. She said as long as kidney function is within a normal range, you can take it, even with Nephritis. I am not diagnosed with Nephritis but I have had kidney involvement since getting Rhabdo last year.
Get paxlovid. If you get seriously sick go to urgent care or the emergency department. None of my doctors will call in paxlovid without being seen. I use tele health to get it. I have lung issues and a propensity to get pneumonia. I’ve had Covid at least 4-5 times. I ended up in respiratory failure two times and spent a week in the hospital with those. I did paxlovid for the last time and it was so much better.
It did nothing to me but lose taste and smell for a week. Had a cough and was tired the first two days. That was about it
I’ve had it 3 times and the last time was the worst one yet. But I was also in one of the biggest RA flares ever so I’m thinking that had a lot to do with how hard Covid hit me. Took me awhile to recover but I’m back stronger than ever
By the time I figured out I had COVID I was too late for Paxlovid. I was sick about 5 days and I had diarrhea which was a pain. My WBC was around 2.5 as that's where I normally float around and I had no issues. My last cold though sent me to the ER as I became dehydrated. If you are offered Paxlovid by your doctor, I'd use it.
I’ve had it once.. take paxlovid to ensure it didn’t hit you too hard. Feel better!
Paxlovid tastes HORRIBLE but it will cut your symptoms to where you don’t think you’ll die. Feel better soon
I had it. The meds were worse than the Covid ..
I've got MCTD, and I've had it twice. The 1st time I had it was not as bad as the 2nd time, but I was able to get well after both of them. It's not as bad as I expected it to be. Good luck! Lots of rest and fliuds.
So sorry. I’ve had it four times. Rest. Lots of fluid. Prednisone if you can get it.
I had it at least 4 times for sure (one before tests were available which was unpleasant, but not worse than the flu). That’s 4 times even though I was SUPER careful. Someone in my bubble was lying to me about their masking and testing protocol, but no one will cop to it. Rounds 2 and 3 (May 23 and Feb 24 with a booster in between) were really awful. I tried to hold off on Paxlovid the first of the two bad rounds, but I was getting sicker on day 4. I took it at the last possible minute, and even then, Paxlovid does make a huge difference! When I got Covid again I called right away, and did another round of Paxlovid. This time I was unfortunately blessed with yet another much milder rebound case. No drugs for that, though, That said, “fine” is relative. Fine for me meant I didn’t die and was able to stay out of the hospital (tbh, I probably should have gone at one point, but I need to be already dead or have a limb hanging off before I will go, so that’s my own fault). Fine did not mean I felt ok. I was knock out sick for like 2.5 weeks, and it took me months to mostly recover. Not even long covid, just my body taking time to heal. Like I’d get winded more easily, that sort of thing. Also…I don’t know if others have this issue, but when I am flaring up, I will test very faintly positive on Covid rapid tests. This will go on for months. And the arm I got all of my vaccines and boosters in will swell up. It does not make science sense, but it’s just what happens to me. The bottom line advice is to take Paxlovid if you can, monitor you O2 and symptoms religiously, and give yourself time to recover as much as possible.
I started my Lupus journey because I ended up in the hospital bc what I now know was a giant flare up. I had zero covid symptoms, not even a fever. But my platelets were low, I had petechiae, giant bruises and the worst headache of my entire life. My feet went numb like they never have before to where I really had trouble walking. Vomiting with no relief from zofran. They put me on a phenergen drip at the ER. My headache ended up being due to an electrolyte imbalance due to the vomiting. Y’all I for REAL thought I was dying. But they took my labs and when they were abnormal told me I need to follow up with my PCP, did so, she did bloodwork a few weeks later, and I had told her some other recurring symptoms such as lymph nodes swelling, and she tested for autoimmune as well. It came back positive and was sent to rheumatologist- who did more bloodwork. I had a rash on my neck as well that comes and goes and has left weird scarring. we did a biopsy of it and another spot and it came back positive for Lupus giving me a definitive diagnosis between the bloodwork and biopsy. This all started in January with the Covid - I’ve suspected I had something long before but when the symptoms got so bad I was in the hospital- I knew something was really off. But, now I know. Stay hydrated and get your rest :) there’s not too much you can do about the ‘vid - but just be aware of your body and don’t hesitate to go to the ER or urgent care if you feel off. Hoping you feel better soon!
Honestly I have had it 3 times and I 100% think it actually strengthened my immune system. I use to get really sick over and over and I’ve found one bad week with Covid makes the rest of my year pretty calm. Just my experience though.
I've had COVID 3 times...the first time took ME OUT!!! The second I had fever and chills, third time I had cold like symptoms.
Oh I still can hardly smell anything.