autoimmune reaction after COVID

[Pistol]

 I was hospitalized with COVID pneumonia, and have been recovering at home, doing well. A week after coming home I developed a sudden very high fever that would not come down with xtra strength tylenol, as well as severe ankle and calf pain. Went to ER, only thing abnormal was wbc 15.5. Sent home on antibiotic. Next day my legs were like tree trunks: no shape, swollen, hard, ice cold, and of course severely painful. I could barely walk. Fever continued unless I took NSAID around the clock. Swelling slowly came down, pain continues, now also in wrists and forearms. I am also developing a rash on my face ( nose and right cheek ) that is raised and sore. 

My suspicion is an autoimmune reaction to the virus. I have a telehealth appointment with my PCP today, and I am sure he will order autoimmune labs etc, will know more after that. I am already on Plaquenil for my POTS. 

I know a lot of you here suffer from autoimmune causes for their dysautonomia. Despite the fact that I have longstanding problems with joint pains all my AI labs always were normal, except for elevated ESR. If the labs show AI - would this be something that could respond to IVIG? So far my vital signs have been surprisingly stable, although my HR goes up 120's every time I get up ( was completely stable before ). But I really have no POTS complaints so far. However - I was told that with many POTS patients the body takes care of the immediate crisis first and then flares afterwards, so we'll see. ( I am a dangerously positive person, so I keep my fingers crossed 🤫).

[MikeO]

So sorry @Pistolyou have to go thru this. Keep faith it will only get better.

[MomtoGiuliana]

So sorry.  I haven't heard of swelling as a typical aspect of COVID but I have heard of many people developing rashes weeks after the initial infection.  It can definitely cause some weird and long lasting symptoms.

[cmep37]

7 hours ago, Pistol said:

many POTS patients the body takes care of the immediate crisis first and then flares afterwards

This is always been my experience with a virus - I think I've got away with it and then bam! POTS strikes!

@PistolI am so sorry to hear your recovery from Covid hasn't been straightforward.  Your symptoms do sound like they could be autoimmune - hopefully your bloods will show something useful for your doctors to go on.

 

[MTRJ75]

I feel like everything we thought we knew in the past is out the window with COVID. I've heard of so many odd reactions and symptoms. I don't think bloodwork means anything in terms of AI either. A lot of people, like myself, don't show, but have every symptom and comorbidity association. 

Do you have access to a cardiologist? I know there can be temporary cardiac inflammation, which maybe has something to do with the swelling? 

If you have access to IVIG, go for it. I've read it's been a savior for autonomic issues on occasion as well. 

[Pistol]

@MTRJ75 - I do have a cardiologist but the swelling in my legs is definitely not edema but swelling from joints and muscles. My PCP might start steroids again for a while, and despite the fact that they make me crash I agreed. I can't go on like this and if I wean off extremely slowly I should do OK. 

[MTRJ75]

Ugh, steroids are the worst. Good luck. You may want to check in w/ your cardiologist anyway and make sure there's nothing unseen going on. I know some very young people who have had cardiac issues post-COVID, usually temporary though. 

[cmep37]

@Pistol - big hugs.  In my experience steroids work quickly if they are going to help so fingers crossed! 

[dancer65]

So sorry you are having a bad time after COVID I really do hope  you can find something that helps . 
Steroids always make me hyper and then exhausted once I come off them , hopefully weaning slowly will cause as little disruption as possible . 
Take care 💗

[Pistol]

Thanks @dancer65 🥰

[Nin]

I'm sorry pistol you have had such a hard time. This virus is brutal! 

[Rexie]

Pistol! Get well soon! Apparently COVID-19 is a systemic multiorgan viral invasion and symptoms like yours have cropped up after initial COVID infection and is referred to as Acral edema and may include numbness and fluid leakage from small blood vessels in the area due to increased vascular permeability. It usually last 6 days or so.  See: 

Acral edema during the COVID-19 pandemic, Jara Valtueña MD, PhD, Daniel Ruiz-Sánchez MD, PhD, Victor Volo MD, Pilar Manchado-López MD, María Garayar-Cantero MD, International Journal of Dermatology, Vol. 59, pp. 1155–1157; 2020: https://onlinelibrary.wiley.com/doi/epdf/10.1111/ijd.15025

Dermatological manifestations associated with COVID-19: A comprehensive review of the current knowledge, Mohseni Afshar, Z, Babazadeh, A, Hasanpour, A, et al, J Med Virol., Vol. 93, pp. 5756- 5767; 2021: https://onlinelibrary.wiley.com/doi/10.1002/jmv.27187

Be of good cheer...

[Pistol]

@Rexie - thanks for the article, that is interesting. I am slowly improving.

[POTSie78]

Sorry you are still suffering from this awful virus.  I'm not sure if this helps any but my husband's step-mother ended up with bad cellulitis in her legs after she came home from being hospitalized with covid-19. She was so weak and on o2 and needed to go to rehab but all the facilities were full. She ended up having home health care and eventually the cellulitis went away with more antibiotics. 

[Pistol]

Update: My PCP ordered an inflammatory panel and all of my labs indicating inflammation ( CRP, ESR ) were sky high. The D-Dimer was also high, which is normally an indicator of a blood clot but as per my research typically is also elevated with post-COVID inflammatory disease. The Ferritin level is also very high. According to what I have read these labs all are elevated with cytokine storm, which has been happening after COVID. Anyway - today I will start steroids and am hopeful that they will take care of the problem. Ankles are still very swollen, red and hot, although improved. Still running fevers. Steroids should stop all of that. I hope the steroids will not flare the HPOTS too bad, as they did on the past. Thanks for all the well wishes!

[MikeO]

Hang in there @Pistolit will only get better. I have a relative that is a nurse and she had caught covid and it got into her lung pretty good. She had to take supplemental O2 for a while but has recovered fully since.   

[KiminOrlando]

Hang in there. It sounds like the post viral stuff. I guess your ANA was negative? You can have a positive ANA but test negative for all autoimmune diseases and end up in medical purgatory. I hope you feel better soon. Keep us posted.

[Pistol]

@KiminOrlando - huh, my PCP said he would draw an entire inflammatory panel, and they drew 35 ml of blood. And guess what - no ANA, no RF! NOTHING autoimmune, just CBC,ESR, D-Dimer and CRP. I was so mad! I have had joint problems since onset of POTS and was worked up twice by Rheumo, and each time all labs were normal. This time, with everything going on, I would have really NEEDED to know if the ANA was positive - and he didn't order it! --- Started Prednisone today and already am seeing improvements. Thank God! And the best thing - first day without a high fever! 

[Rexie]

Pistol - glad you're feeling better! Maybe your PCP is on the right track with you. I'd rejoice not to have a positive ANA - one less complication. However, did you know that the reported prevalence of ANA in healthy individuals is 4-20% or more and it's higher among people over 65 (up to 30%)? So even if you had had the test, a positive ping for ANA might not mean much. None of my docs have been much interested in my slight ANA positive test (I don't have joint pain) or my middle-of-the-road positive for striational antibodies. 

[Pistol]

Thanks @Rexie for the info! The problem seems to be with the rheumatologists - they do not consider anything wrong with you UNLESS you have a positive ANA, despite the fact that there are a lot of sero-negative AI cases. In my case my autonomic specialist is the one who suspects an auto-inflammatory cause for my HPOTS, and he says that unless the rheumatologists check for that they will not find anything by running autoimmune labs. He put me on Hydroxychloroquine 10 months ago and said that he suspects it will help my POTS also. And he was right! My generalized joint pains improved AS WELL as the POTS! Since starting the Plaquenil I have been able to decrease several of my cardiac meds and SSRI, and my BP has been stable. So his theory was right! But this post-COVID thing seems different b/c of how severe the pain and swelling were. But I am getting better, that is all that matters! 

[KiminOrlando]

@Pistol I'm dumbfounded that your doctor didn't run an ANA and full Rheumatology panel. Viruses are often the trigger for autoimmune diseases, or so they suspect.