Spondylitis Association of America
As the coronavirus (COVID-19) virus continues its global spread, many of you in the spondylitis community have reached out with concerns about how it may affect you. The Spondylitis Association of America has spoken with rheumatologists and researchers, and compiled data from trusted medical and news sources in order to create this report, with one goal in mind: to address the specific questions and needs of those with spondyloarthritis (SpA), including ankylosing spondylitis, and related diseases. Scientific understanding of the virus is still evolving, so we will update this report as new information comes to light.

https://www.spondylitis.org/About-S...pondyloarthritis-your-questions-answered

Best Regards,

Kristine Callender, MPH, CHES
Programs Manager
Spondylitis Association of America
To be a leader in the quest to cure ankylosing spondylitis and related diseases, and to empower those affected to live life to the fullest.
Direct: 818-465-4298
Office: 818-892-1616 ext. 236
16360 Roscoe Blvd. Ste 100 Van Nuys, CA 91406
Spondylitis.org
That's excellent. Thanks.
Thank you!
Thanks!
Good information. Thank you!
Thank you very much!
Much needed information from a trusted source. Thank you.
Here in south Eastern Europe they give covid 19 patients monoclonal antibodies used for Rheumatoid arthritis. They say the inflammatory reaction is to strong
Here's a link to an article in the journal Nature about all the drugs being evaluated for use against coronavirus: https://www.nature.com/articles/d41587-020-00003-1

TNF-a inhibitors are not on the list, but other drugs used to treat autoimmune disorders like rheumatoid arthritis and lupus are on the list, the anti-malarials in particular.

Note, Nature is making all its coronavirus research available to the public for free right now.

I'm editing this post to include this link to a Washington Post interview: https://www.washingtonpost.com/podc...no-one-knows-why/?p9w22b2p=b2p22p9w00098

The interview is interesting because it explores the question why children aren't being severely impacted by coronavirus. Some researchers think this is key to identifying a treatment. The fact that children aren't as severely impacted suggests two things: (1) it's the immune response to the virus, rather than the virus itself, that is killing people and (2) a lifetime of damage to the lungs makes adults more vulnerable the older they get. As for (1), that explains why immunosuppressant drugs are being investigated as treatments. And that would seem to make our decisions whether to stop taking our meds more complicated. Just my two cents because I'm the kind of nerd intensely interested in these sorts of puzzles.
Hello everyone,

Thank you, Winston, for these information.

If I understand correctly, in the case of the hypothesis 1 (immune response to the virus), the AS people who don't take biologics are more at risk of complications if catching the virus? Our crazy reactive immune system would go absolutely nuts, making us really sick... I have AS but I'm not on biologics (only NSAI). I'm being very careful to avoid all unnecessary contact with people but I can't help being a bit anxious. (I live in France, not far from a cluster...)

Stay safe everyone,

Alice
Just to be clear, it's all hypothetical (as you correctly note). Various drugs are still in trials, and they aren't all biologics. But, yes, in the case of hypothesis 1, the AS people who don't take *immunosuppressant* drugs *might be* more at risk of complications. Could be, though, that the timing of immunosuppressant drug administration is important. We'll just have to wait and see what the trials reveal. I'm on a biologic, and, right now, I'm staying the course because I don't know what else to do.
I think there are many things that are not known yet.
Because on the other hand the first Polish victim of Coronavirus is a woman 57 yo that they stated was requiring immunosuppressants.
Originally Posted by Winston
Here's a link to an article in the journal Nature about all the drugs being evaluated for use against coronavirus: https://www.nature.com/articles/d41587-020-00003-1

TNF-a inhibitors are not on the list, but other drugs used to treat autoimmune disorders like rheumatoid arthritis and lupus are on the list, the anti-malarials in particular.

Note, Nature is making all its coronavirus research available to the public for free right now.

I'm editing this post to include this link to a Washington Post interview: https://www.washingtonpost.com/podc...no-one-knows-why/?p9w22b2p=b2p22p9w00098

The interview is interesting because it explores the question why children aren't being severely impacted by coronavirus. Some researchers think this is key to identifying a treatment. The fact that children aren't as severely impacted suggests two things: (1) it's the immune response to the virus, rather than the virus itself, that is killing people and (2) a lifetime of damage to the lungs makes adults more vulnerable the older they get. As for (1), that explains why immunosuppressant drugs are being investigated as treatments. And that would seem to make our decisions whether to stop taking our meds more complicated. Just my two cents because I'm the kind of nerd intensely interested in these sorts of puzzles.


I was just heading here to post something similar when I saw this. There are indeed some indications that a cytokine storm (immune overreaction) is what is causing severe pneumonia and organ shutdown in the most critically ill patients, and if that is true then it is possible that our biologics might improve our chances, if we get sick.

https://www.oregonlive.com/coronavi...-is-key-to-patients-survival-report.html

Bear in mind research is in early stages and there will be varying ways of interpreting the same data.
Below is information from the UK Crohn's and Colitis' webpage:

"Who is at extra risk from novel coronavirus?

Generally, novel coronavirus can cause more severe symptoms in people with weakened immune systems, older people, and those with long term conditions like diabetes, cancer and chronic lung disease.

Continue with your current treatment for Crohn’s or Colitis if your condition is stable, but call your IBD team if your Crohn’s or Colitis flares (active disease) or you develop any new symptoms. Speak to your IBD team before making any changes to your treatment.

Am I at extra risk because I am taking immunosuppression treatment?

Immunosuppressive medicine for Crohn’s and Colitis includes azathioprine, mercaptopurine, methotrexate, cyclosporin, infliximab, adalimumab, golimumab, ustekinumab, prednisolone, budesonide, vedolizumab and tofacitinib. Visit our treatments pages for information about these medicines and how they may affect you.
People taking immunosuppressants for their Crohn’s Disease or Ulcerative Colitis are not at increased risk of catching novel coronavirus, however they may be at extra risk of complications from the virus if they are infected.
People on immunosuppressants should seek advice by telephone if they develop symptoms of either seasonal Influenza or novel coronavirus.

Should I stop taking my immunosuppression treatment?

For the majority of people, you will be advised to continue with your immunosuppressive treatment.
This treatment does not increase the risk of being infected with coronavirus. You should take precautions to avoid infection through good personal hygiene and avoiding unnecessary close contact with people who are unwell, as discussed above ‘What can I do to lower my risk?’
If you stop taking your immunosuppressive medicine, you may have a flare which will increase your risk of complications if infected with coronavirus.
If you still have concerns about continuing your medication, you should speak to the medical team caring for you.
If you are at an increased risk of infection, for example, if you’ve been in direct contact with an infected individual, have travelled to a high infectivity area, or have another serious comorbidity that increases your risk further, you should seek advice from your medical team by telephone before making any changes to your medication."


Reference: https://www.crohnsandcolitis.org.uk/news/updated-wuhan-novel-coronavirus-advice#g

My personal opinions (not medical advice):

- We are at risk all the time for viruses or bacteria that can potentially kill us. This includes tuberculosis which all of us on immunosuppressants are screened for. There are 10 million cases of tuberculosis worldwide each year, with 1-2 million fatalities. Other viral infections or bacteria infections can develop into sepsis which can also become very serious for us. We need to be aware and alert all the time and lead lifestyles that minimizes our risks on a daily basis.

- I have personally travelled to Vietnam, Thailand, Greece, and Northern Europe while being on Humira. I have been camping, showering in campgrounds (breeding ground for bacteria), walking in charity walks and parades with hundreds and sometimes thousands of people, while being on Humira. I have been on 10-15 flights the last 8 months of my Humira treatment. I didn't get sick from any of that, except for a minor sore throat after my travel to Greece. I didn't even get sick during my travelling to Vietnam and Thailand when my travel companion who does not have pre-existing conditions got sick. I ate street food (hot!) in Vietnam but said no to cold desserts which my travel companion ate.

- The absolutely best things we can do is stay calm, carry on, lead healthy lifestyles with diets that improve our immunity, and hope for the best. I will not discontinue my treatment. If the corona virus outbreak becomes much worse where I live, or if new evidence surface for patients on biologics, I will reevaluate and ask my rheumatologist for advice.
Looks like there are some "new" cautions about potential increased risk for complications with anti-inflammatory meds:
https://www.theguardian.com/world/2...rugs-may-aggravate-coronavirus-infection

But they don't really appear to be that new:
https://www.raps.org/news-and-artic...atory-roundup-frances-ansm-warns-about-n
Aside from this, there is quite a bit of research suggesting that NSAID seems to increase the likelihood of bacterial infections and/or complications, severity rates for/from bacterial infections in some situations, for some people.

At the end of the day, we are still at:
- We have theories and some data on how the novel coronavirus works and what affects it.
- We do not have a lot of clear research/evidence.
- Healthy hygiene habits are absolutely a key protective factor.
- And social distancing works so if you are risk, do it. (Even if you aren't, it's probably a good idea at this point.)

There is clear research/evidence that your activity level, sleep, and mood have a significant impact on immune system functioning and overall health outcomes. In my humble opinion, if a medication helps you to be more active, sleep better, and/or have better mood, then it probably is worth it.

That said, I did my monthly cosentyx dose yesterday and was pretty darn nervous about it. Well, fingers crossed and let's all be smart and take good care of ourselves! @PsSpa_M_1989, MaryBeth, and everyone else, thanks for sharing the info that you're finding. Everything helps and it's good to not feel so alone!


Two university hospitals here in the Netherlands have started an experiment where they give hospital employees a tuberculosis vaccine to boost their immune system. They hope this way the symptoms of the corona infection will be kept mild.

I wonder if any university is right now actively researching HLA-B27 in relation to this new corona virus as well. It would be a good opportunity to do so now.
Originally Posted by Lacan
Two university hospitals here in the Netherlands have started an experiment where they give hospital employees a tuberculosis vaccine to boost their immune system. They hope this way the symptoms of the corona infection will be kept mild.

I wonder if any university is right now actively researching HLA-B27 in relation to this new corona virus as well. It would be a good opportunity to do so now.


My parents who live in the Netherlands and have underlying conditions asked me to post on the internet actually that they feel threatened by the response of the Dutch government to this crisis that plan to develop herd immunity by letting 60 - 70% of the NL population to be infected. We see British already retracted from this crazy idea this week after simulation which showed that approx 250 000 people would die by August this year in UK and their NHS would collapse.

I am in no way follower of the whole EU idea, but it is very strange to me that several countries like: France, Poland, Italy etc introduced strict measures to contain this outbreak, whereas other like Netherlands & Sweden thinking to do the opposite. Logically, if in NL & Sweden virus will spin out of control other countries will have to keep their borders closed for a very long time. It a joke!!
Hi achala,

I completely agree with you, the government's response has been very weak. They only closed the schools out of fear of civil unrest, not because of the virus, because they still have the opinion that the virus hardly spreads among children and young adults!
here is a bit how it works:
https://www.iaslc.org/Portals/0/Editorial%20(Carbone).pdf?ver=2020-03-02-221054-687

https://www.forbes.com/sites/saibal...tial-coronavirus-treatment/#62f525e37994
Maybe we should do our own case study. If I catch the virus, I promise to check in often (if I'm able) and let you know what I'm experiencing. Maybe you'll do the same?
This is all so overwhelming. I've had a cough/sore throat and cold symptoms for 3 weeks now so I postponed my last infliximab infusion, which I would have done before this pandemic anyway. Now I'm worried for obvious reasons about getting it done, and my throat is not getting any better frown. I've been taking my methotrexate and NSAID though. I'm very thankful we are able to pull together and support each other with this information.
Has an MD looked at your throat? That is where I would begin.
I would also check humidity levels where you stay, every 10 min have a sip of water and gargle throat with salt couple of times daily. If you can have a shot of vodka the old school Caucasian way;) or from what I understand bourbon in your parts...
The doctor's here are banned from seeing patients for routine or elective things, and it's really not a big deal, but I have been thinking it's lasted long enough that I should at least call the rheumatologist and ask. I think humidity is a good thing to check on actually also, it gets really dry here! That's a great idea. Thanks guys!
Interesting read: https://www.medpagetoday.com/infectiousdisease/covid19/85545
Originally Posted by Winston


I read the article. It is very interesting. The sentence that is questionable to me is:

"Biologics and JAK inhibitors have a somewhat greater risk of infection, and many physicians would recommend stopping these if someone develops COVID-19, although we don't have much data to guide us," he said.

It seems to me that stopping the biologics after developing covid-19 would be too late. Wouldn't the biologic still be in a person's system long after the covid-19 has run its course? This appears to me that it is all speculation right now without any proof either way regarding the vulnerability of the population on biologics, but I am compelled to read as much about it as I am able.
Winston, I agree, I think we should encourage people with SpA to check in. with or without COVID19. to see how people are doing.
Just fyi: One thing I've done after reading this article, https://www.nytimes.com/2020/03/24/magazine/coronavirus-family.html (which is the most informative article I've read regarding the actual symptoms of coronavirus infection, by the way), is purchase a pulse oximeter for use at home.
Originally Posted by Winston


Thank you, Winston, for sharing that article. There is some evidence that Vitamin D can modulate cytokine regulation and prevent critical manifestations of various infections. Before the advent of COVID-19, one research study [1] found that Vitamin D deficiency is an independent risk factor for mortality among critically ill patiens; another research study [2] found that more than 60% of sepsis patients (a possible complication of COVID-19) had Vitamin D deficiency. Vitamin D deficiency correlated with mortality, as did older age.

However, in a research study from last year [3] where very high concentration Vitamin D supplementation was given to critically ill patients with Vitamin D deficiency at presentation, found no clinical effect of increased Vitamin D serum levels. Actually the trial ended early as the Vitamin D group had a slightly higher mortality than the placebo group.

This may suggest different things:

- Vitamin D acts pre-preemptively and long-term, in the acute phase it is too late?
- People with sufficient Vitamin D in general lead healthy lives and less frequently end up at the ICU?
... for example, spend time outdoors and receive Vitamin D from the sun?
... or, eat Vitamin D rich foods, such as eggs, salmon, and fortified milk, which have other health benefits?

Anecdotally, the seasonality of infections in the northern hemisphere - as opposed to the relatively stable annual rate of infections in countries closer to the equator, may suggest that it is better to take Vitamin D supplementation than not to take it, especially during the winter.

[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4449478/
[2] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6377223/
[3] https://acphospitalist.org/weekly/archives/2019/12/18/2.htm
Good thread. So....the last week my DW was in the hospital. The Medical Center and all of Seattle are in lock down. The hospital does not allow visitors except for people who are dying, need their caretaker to control out of control behavior or at discharge. Screenings increased each day I came to the hospital. The hotel where I stayed had 10 guests in a 400 person hotel. No food service, no fresh brewed coffee. The highlight was I got my pizza in 10 minutes from Dominos'. Now home I wanted to add my 2 cents.

For decades Chinese have been accustomed to cuisine experiments. The most recent has been called the period of "wild taste". SARS arrived from a civet who had been infected by a bat. A diner consumed the civet became ill and in the elevator the Metropole Hotel vomited. And SARS was borne. This follows MERS H1N1 and no Covid 19. All RNA virus which means they replicate very rapidly like building a house of cards on a sandpile at the beach and the top card jump to another species. In the current Pandemic, the virus is highly contagious and unfortunately, as we all know, lethal.

The seminal book on the subject is Spillover by David Quamen.

Our response to CoVid 19 will be in a word individual. Personally without additional data, AS and the biologic mitigators of TNF do not in and of themselves portend larger or higher risk of infection however, and it's important to say, not everyone agrees. Personal hygiene and avoiding sick contacts is the primary method to avoid contagion.

Large cohort studies failed to discover a link between serious infections and the use of anti TNF blockers. In fact alleviating immobility, decreasing pain and suffering led to many and significant gains in the lives of people who suffer from AS. That said, and again, if you suffer from cardiac, pulmonary, endocrine your risk is higher. The reason for this is central to how an RNA virus works. It is imperfectly created, has many coding errors and unlike DNA (think Herpes) cannot sustain it's own growth...so this cunning little demon attacks new people and creates more chaos. This is why the minute we think only elderly people are susceptible the virus changes and jumps to younger people other wise healthy (like SARS) and starts affecting - and killing- them. More lives more age groups means more time alive for the virus. It does not hate us, it's simple math....and the opportunity the virus finds. So all of this long winded mean...the card dealer has jokers in the deck.

It's not predictable as much as we would like. So the advice remains. Avoid sick contacts, Don't travel. Eat a healthy diet and sanitize your home, car and personal items every day. Before something gets into your home (yes mail) it gets wiped down or sprayed with lysol. If you are ill have groceries necessary items brought to your door by friends, when they leave you sanitize the items in front of your house and discard the bag outside. Wash your hands and arms.

It is very difficult to watch my colleagues risk their lives doing what we do. They are daring courageous people.

Stay Safe.
Originally Posted by PsSpa_M_1989
Originally Posted by Winston


Thank you, Winston, for sharing that article. There is some evidence that Vitamin D can modulate cytokine regulation and prevent critical manifestations of various infections. Before the advent of COVID-19, one research study [1] found that Vitamin D deficiency is an independent risk factor for mortality among critically ill patiens; another research study [2] found that more than 60% of sepsis patients (a possible complication of COVID-19) had Vitamin D deficiency. Vitamin D deficiency correlated with mortality, as did older age.

However, in a research study from last year [3] where very high concentration Vitamin D supplementation was given to critically ill patients with Vitamin D deficiency at presentation, found no clinical effect of increased Vitamin D serum levels. Actually the trial ended early as the Vitamin D group had a slightly higher mortality than the placebo group.

This may suggest different things:

- Vitamin D acts pre-preemptively and long-term, in the acute phase it is too late?
- People with sufficient Vitamin D in general lead healthy lives and less frequently end up at the ICU?
... for example, spend time outdoors and receive Vitamin D from the sun?
... or, eat Vitamin D rich foods, such as eggs, salmon, and fortified milk, which have other health benefits?

Anecdotally, the seasonality of infections in the northern hemisphere - as opposed to the relatively stable annual rate of infections in countries closer to the equator, may suggest that it is better to take Vitamin D supplementation than not to take it, especially during the winter.

[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4449478/
[2] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6377223/
[3] https://acphospitalist.org/weekly/archives/2019/12/18/2.htm



I know anecdotes are just that, anecdotal. That said, we live in a latitude that means good doctors test their patients' Vitamin D levels in blood work. Many here (northern half of US) are deficient.

My husband used to average about 4 or 5 colds a winter When the original round of Vitamin D research came out, his blood tests showed his D level was very low. He was supplemented, his levels came up, and after that he averages perhaps 1 to 2 colds per winter.

Nothing else in our lifestyles changed. So I am not at all convinced that there is a correlation between D levels and healthy lifestyles (after all, those of us who work have trouble getting enough sunlight to keep our D levels high enough most of the year even if we are otherwise active). I do think that D plays an independent role in modulating the immune system so it works better. And I've made sure we both take our supplements every day.

Considering how it likely works, I would not expect it to make much difference if given after acute illness of any kind is already underway.
Originally Posted by Mary Beth
I know anecdotes are just that, anecdotal. That said, we live in a latitude that means good doctors test their patients' Vitamin D levels in blood work. Many here (northern half of US) are deficient.

My husband used to average about 4 or 5 colds a winter When the original round of Vitamin D research came out, his blood tests showed his D level was very low. He was supplemented, his levels came up, and after that he averages perhaps 1 to 2 colds per winter.

Nothing else in our lifestyles changed. So I am not at all convinced that there is a correlation between D levels and healthy lifestyles (after all, those of us who work have trouble getting enough sunlight to keep our D levels high enough most of the year even if we are otherwise active). I do think that D plays an independent role in modulating the immune system so it works better. And I've made sure we both take our supplements every day.

Considering how it likely works, I would not expect it to make much difference if given after acute illness of any kind is already underway.


Good choice Mary Beth! Happy to learn that your husband has fewer colds. My mother has supplemented with Vitamin D for many years and she has told me the same thing. Fewer respiratory infections with Vitamin D.

I started Vitamin D supplementation last year, after I understood its potential benefits. By the way - I am in San Francisco, white, and at worst I had 18 ng/ml of Vitamin D in my blood (slightly deficient). It was after a cloudy winter here. I spend most of my time indoors, except when I am riding my bike to work. :-)

Below is good video, a Doctor discusses the results of an extensive British study regarding the effects of Vitamin D supplementation on upper respiratory infections:
https://www.youtube.com/watch?v=W5y...aCrsNSLqxstpm_6u_hQTOFCOFKWk9ytTG23CRo2c
This is the best, most informative article I've read to date on how asymptomatic people transmit the virus (it IS airborne, contrary to what some health authorities keep saying) and on the benefits of wearing masks in public: https://www.theatlantic.com/health/...ndemic-airborne-go-outside-masks/609235/
For weeks we have known that the virus is partially airborne in droplets. The explosive contagion convinced us that in spite of our uninformed and chatty Surgeon General's opinion, we would begin wearing masks. Incredulously we took flak from administrative managers. We protested, they backed down. At one point I was wearing an N95 on my unit which works with Co-Vid positive patients and was told that I was not authorized to use one since none of my patients were having droplet producing procedures. It was the first time in 30 years as a nurse that anything like this has occurred.

We live in times where opinions rumors and allegations are taken as fact and worse as truth. We have a Surgeon General who is not bright. WHO does not feel that this virus shows local transmission aka airborne. However, there is enough evidence that within close contact it is.

Several days later I took an FMLA for my wife's surgery and we remain at home. I am not ill nor symptomatic.

Thank you Winston for your insight.
I really appreciate the SAA’s great info on COVID-19:

https://spondylitis.org/coronavirus/

I had no idea that HLA-B27 offers some advantage in immune response to some viruses. Maybe the gene has persisted because, say, our ancestors were more likely to survive flu etc

I am sure there will be regular updates as more information becomes available.
Hang on a second. That would be contradictory to what Dr. Oxiris Barbot, commissioner of the New York City Department of Health and Mental Hygiene said in the couple of interviews some weeks back, encouraging people to join the parade, no?
I have been following closely the spread of this virus since mid Jan in China every day, reading some papers and news, and it looked quite serious back then. Some of the more experienced WHO official like Mike Ryan for example (experience fighting Ebola for many years) were advocating for aggressive eradication of the virus, but some even yesterday reassured wearing a mask is not good for you. Couple of days back i ve seen a press conference of chief public health officer Dr. Theresa Tam in Canada saying not to wear masks in public as it increases your chances of catching corona-virus! At the same time wife of former president of Czech Republic advocating for her campaign of making masks in Prague (where masks became mandatory and Check exponential curve flattened).
5 days ago we have 250k cases globally, 3 days later 500k, today we have 870k globally. Half of the world is under some kind of mandatory or voluntary movement restriction.
The choice is yours. I wear a mask.
Finally, some data: https://ecancer.org/en/journal/arti...ystematic-review-of-current-evidence/pdf

Warning: When you click on the link, it's going to download a .pdf file to your machine -- a research paper from a reliable source entitled "Associations between immune-suppressive and stimulating drugs and novel COVID-19—a systematic review of current evidence."
Again, thanks Winston.
Originally Posted by Winston
Maybe we should do our own case study. If I catch the virus, I promise to check in often (if I'm able) and let you know what I'm experiencing. Maybe you'll do the same?

Checking in... No virus currently. My husband and I've been self isolating since mid-January, we're retired. Only leave home for medical appointments and twice for groceries ordered online and delivered to my car. We have ordered items delivered to our home also. I haven't been as strict as I probably should be about cleaning items before bringing them indoors, I just don't have the energy. I throw away bags-boxes right away. I wash my hands-arms before-after touching plus clean items while preparing them. Daily disinfecting is usually every few days. I hope that's going to be enough?!

I went for my Remicade infusion on Monday April 6th, they gave me a private room, yay. Our area is ordering everyone to wear masks in public. The only mask I had was a leftover from years ago, slightly dirty but unused N95, I apologized repeatly to my nurse but she was so kind, reassuring me that I did the right thing in wearing it. She even told me how to sanitize it and suggested I wear a scarf over it to protect it and ease feeling scorned by others because N95s are suppose to be worn only by medical workers.

I've taken D3 supplements for years because I don't like milk. You need D to absorb calcium hence it is added to milk. I like the theory that doing so may help me stay healthy if I get Covid 19.

I do stop by to read the forum regularly even if I don't post often. Hope others will check in healthy but if not please check in when you are able.
All the best,
Faye

Sharing an article I found helpful written by a nurse with RA that got covid19.

https://ghlf.us8.list-manage.com/tr...d6fbc&id=92f7d18e3f&e=d5373109e2

Stay safe.
Faye
Thanks for posting that, Faye. It's helpful, psychologically, to read about someone on a biologic and methotrexate going through it and coming out the other side.
Thanks for the story.

I’m hoping we soon get info about biologics and this disease. I get his new it all is but surely we should expect to hear some information about the combination of the two? As it moves through Western countries hopefully there is some data out there.
A new article in the Lancet calling for TNF-a inhibitor drug trials for the treatment of COVID-19: https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)30858-8/fulltext

The article contains this bit of information near the end:

"There has been interest as to whether the safety of anti-TNF therapy in patients with COVID-19 might be gleaned from analysis of the course of COVID-19 in patients with inflammatory bowel disease (IBD) or rheumatoid arthritis who are already on anti-TNF treatment. As of April 6, 2020, on SECURE-IBD, a coronavirus and IBD reporting database with a register of outcomes of IBD patients with COVID-19, there were 116 patients on anti-TNF therapy alone, 99 of whom recovered without hospitalisation and one patient died. By contrast, about half of 71 patients on sulfasalazine/mesalamine recovered without hospital admission and six patients died. Thus IBD patients with COVID-19 on anti-TNF therapy do not fare worse than those treated with other drugs, but there are insufficient data to make conclusions about a better outcome."
Originally Posted by Winston
There has been interest as to whether the safety of anti-TNF therapy in patients with COVID-19 might be gleaned from analysis of the course of COVID-19 in patients with inflammatory bowel disease (IBD) or rheumatoid arthritis who are already on anti-TNF treatment.


I haven't heard too much about anti-TNF therapy being any better or any worse. Personally, I like the following article that is more like a list of "honorable mention" drugs that may be helpful in preventing a severe case of covid-19.

https://www.livescience.com/coronavirus-covid-19-treatments.html

I feel good about the medications I take for multiple autoimmune problems including reactive arthritis and uveitis. I take Actemra (tocilizumab) an IL-6 blocker and losartin. Most of my hope is with Actemra. I still take low dose prednisone for uveitis. I have considered suggesting hydroxychloroquine to my opthalmologist because it is sometimes used for uveitis and maybe I could finally get off prednisone.

Overall, maybe I have a greater risk of being infected but it seems to be the "cytokine storm" that kills people. I have read that immunosuppressed people have a somewhat better outcome after being infected. I don't want to be infected just to see what might happen so I'm holding out for the vaccine.

At the University of Iowa Hospital, remdesivir seems to be the drug of choice. However, we don't have that many cases of covid-19 in Iowa yet.
Or lung or vein thrombosis caused by fibrin production. Inflammatory, targeting T cells, ACE 2 binding.

inflammatory cytokines such as interleukin (IL)-6, IL-8, and tumor necrosis factor (TNF)-α activate coagulation pathways and thus alter thrombotic tendency.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4414700/

Hard to admit it but so far being off drugs and having AS reading all up makes me thinking either I am brave or plain stupid. But what can I do if my blood markers shows inflammation free? Do I really take effort to prove I need biologic or just run the course of life...?
Originally Posted by achala
Or lung or vein thrombosis caused by fibrin production.


I have that covered too. I have already survived an extensive, bilateral and multiple pulmonary embolism. It was an event that came with the recommendation that I take coumadin for the rest of my life. It was decided that it was "unprovoked" however prednisone was being blamed. I think it had more to do with reactive arthritis combined with a norovirus infection. Both the pulmonologist and the hematologist didn't agree with me. It did happen when I was taking a high prednisone dose so who knows why it happened.

Originally Posted by achala
Do I really take effort to prove I need biologic or just run the course of life...?


The course of life may come to an abrupt end.
Well seems you have the best middle class healthcare available for you as a results of your lifetime commitment to your occupation. Textbook stuff. Only if they could get you off that prednisone.... but I guess this is your tongue in cheek...😉😌
Just got an email invite to participate in a survey regarding spondylitis and COVID 19. Answered all the questions but for some reason it made me cry.

Living through history turns out to not be very fun.
Me too, Mary Beth. I hope everyone participates.

For those who haven't gotten the email or who maybe overlooked it in their inboxes, SAA and its Medical and Scientific Advisory Board have started a registry of spondylitis patients for the purpose of "spearheading research into the possible impact spondyloarthritis, and medications used to treat spondyloarthritis, may have on COVID-19." Here's a link to the study: https://spondylitis.org/research-new/covid-19-and-spondyloarthritis-survey/

Note that you don't have to have (or have had) COVID-19 to join the study.
Good article, somewhat reassuring.

https://www.nature.com/articles/s41577-020-0312-7

Quote
Targeting TNF and IL-6 increases the risk of bacterial infections but has lesser effects on viral infections (except for hepatitis B activation)...

Targeting pro-inflammatory cytokines with antibodies such as adalimumab, dupilumab, infliximab, ustekinumab, secukinumab and tocilizumab is clinical routine in IMIDs. Potential risk and benefits of cytokine inhibition need to be carefully addressed in order to recommend whether to continue or stop such treatments. Although at first sight cytokine inhibition might be considered as ‘immune suppression’ and therefore harmful in the context of the COVID-19 pandemic, these compounds neutralize individual mediators of the inflammation cascade rather than leading to broad immune suppression. On the other hand, cytokine inhibitors may mitigate the hyperinflammatory state, which is part of the pathogenesis of severe COVID-19. Indeed, studies using IL-6R and IL-6 inhibitors in COVID-19 have just been launched. Hence, approaches that do not affect viral clearance but inhibit hyperinflammatory host responses may exert beneficial effects in COVID-19.
Originally Posted by Winston
Me too, Mary Beth. I hope everyone participates.

For those who haven't gotten the email or who maybe overlooked it in their inboxes, SAA and its Medical and Scientific Advisory Board have started a registry of spondylitis patients for the purpose of "spearheading research into the possible impact spondyloarthritis, and medications used to treat spondyloarthritis, may have on COVID-19." Here's a link to the study: https://spondylitis.org/research-new/covid-19-and-spondyloarthritis-survey/

Note that you don't have to have (or have had) COVID-19 to join the study.


I’ve participated in the initial study too. I hope our experience can be helpful in some small way.
https://www.google.ro/amp/s/www.ilt...idrossiclorochina-sars-cov2-1321227/amp/

Originally in Italian survey of 1200 Italian rheumatologists says amongst 65 000 chronic patients with RA or lupus taking plaquenil only 20 tested positive for covid 19, no one died no one in ICU according to data collected so far.
I have been reading up here
https://journals.physiology.org/doi/full/10.1152/physrev.00013.2020
and here
https://jvi.asm.org/content/82/12/6078/figures-only
on SARS-Cov-2 rNA uniquness comparing to closest in this family corona viruses ability to infect cell with S protein spike that is being cleaved by proteolytic enzymes Plasmin & Furin.
both seems to be usually elevated with people suffering from inflammatory conditions, as well as hypertension, diabetes, coronary heart disease, cerebrovascular illness, chronic obstructive pulmonary disease, and kidney dysfunction that makes the infection outcome resulting in more severe COVID disease.

then I tried to compare if both enzymes are elevated in AS and it returned me this for Plasmin, saying: Unlike in many other inflammatory conditions, plasma suPAR levels do not reflect inflammation in AS.
https://www.researchgate.net/public...r_suPAR_levels_in_ankylosing_spondylitis

and for Furin this 'The enzyme furin cleaves TGF-β, and deficiency of furin is associated with systemic autoimmunity' from Rheumatology ebook p 109 on cytokines:
it says that people with autoimmunity are deficient in furin that normally cleaves (activates) TGF-B cytokines promoting Treg cells via FoxP3. Surprisingly wihout the furin cleavege TGF-B (exhibiting both pro & anti inflammatory activity) along with IL-6 induces IL-17...
https://books.google.ro/books?id=WC...e%20ankylosing%20spondylitis&f=false
Just saw that there is increasing evidence that inflammation (cytokine storm) is what causes the most serious outcomes in COVID-19 and they are testing various monoclonal antibodies as treatment, including Humira.

No results yet and I can’t link to the article because it’s part of a daily coronavirus news scroll rather than a free standing article.

Hopefully we will hear results within a month or two. They have been talking about cytokine storm for months so there is consistency there.
COVID-19 recovery reported in etanercept-treated patient with spondyloarthritis: https://rheumatology.medicinematter...d-in-etanercept-treated-patient/17956996

Notably, the case reports says: "[T]he patient was treated with intravenous acetaminophen 'without the need of antiviral drugs, steroids, antibiotics or intravenous immunoglobulins,' and they note that no respiratory support was required over the 2-week hospitalization period. The researchers add that the 'outcome was favourable,' with symptoms regressing at day 10.

“In our observation, the use of a TNF-α inhibitor prior to the viral infection was not associated with a severe evolution of the COVID-19,” they conclude."





https://www.medscape.com/viewarticle/931745

“ Machado and his colleagues looked at 600 COVID patients from 40 countries, and found that those taking TNF inhibitors for their rheumatic disease were less likely to be hospitalized for COVID-19. However, treatment with more than 10 mg of prednisone daily — considered a moderate to high dose — was associated with a higher probability of hospitalization.”
Another (small) study confirming that patients on longterm biologic therapy and JAK inhibitors do not suffer worse COVID-19 outcomes than the general population: https://www.nejm.org/doi/full/10.1056/NEJMc2009567

In fact, if I'm reading it correctly, the study suggests that patients on longterm biologic therapy fare better than immune-mediated inflammatory disease patients on other sorts of therapy, particularly steroids, methotrexate, and hydroxychloroquine.
In case you have not already seen this study:

https://www.nejm.org/doi/full/10.1056/NEJMoa2020283

Patients with blood type A+ generally fare worse during COVID-19 infection while patients with O- generally fare better.

Here is another study on the same topic:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7276013/

The difference in outcome appears to have to do with antigens.
According to this SF Chronicle article, the same effect of blood types cannot be distinguished in certain risk groups.

https://www.google.com/amp/s/www.sf...his-blood-type-studies-show-15397362.php
The moment they found out Th1 are potentially our saviors, the already started to tests different HLA alleles. Shouldn’t be too long to test the HLA B27 one.

https://immunology.sciencemag.org/content/5/49/eabd6160

I did not find any papers confirming difference between responses of AS people and general population to covid, it knowing th2 overstimulation is our issue as well as in case of covid lead to cytokines storms I remain alert. What they now discovered is that kids are less susceptible to this Coronavirus as they often fall a victim to common cold betcoronaviruses, that show similarities on the 1st part of RNA ORF1A and their T-cells quite remember it.

Good health to everyone.

I hope everyone is doing well. I have been a little unlucky myself. I’m pretty certain that I got covid back in the beginning of May. I have no idea how I got it. Overall it has been a “mild” case, no hospital visit needed. However, the symptoms seem to persist. I’ve been able to get back to work, but I now have flare ups of chest pains and being out of breath.
Yesterday the symptoms got so bad again that it feels like I got reinfected. My sense of taste and smell are gone, and today I suddenly became nauseous, cold and out of breath. Bad sinusitis too. Right now I kind of feel desperate and anxious that I might never fully recover from this.
One positive aspect is that it doesn’t seem to have any effect on my AS. My back and joints don’t feel any worse than normal...
Please watch out for yourself, avoid public places or wear a mask if you have to. And wash your hands often.
Could be interesting for you to watch this video on the long term symptoms reality of covid

https://youtu.be/s_fSz3y022o

More promising information related to use of TNF-a inhibitors to treat COVID-19 from The Lancet: https://www.thelancet.com/journals/lanrhe/article/PIIS2665-9913(20)30309-X/fulltext
In February of this year, I took a flu shot with H1N1-2009 novel pathogen in it, and 2 days later I was at the ER ad was admitted on the spot due to sepsis and I nearly died. I think I had one of those cytoskine storms. I had lactic acidocious and my BNP (brain natriuretic peptide) level was so high (549) it indicated heart failure. My fever was 103.7, BP was 85/40, and heart rate was 150 at rest. Initially they didn't know what I had, but on the third night in the hospital, the test indicated I had H1N1-2009 novel flu. Supposedly we cannot get that from a flu shot, but I had been only out of the house once in 30 days around the time of that infection, and it was to go to the pharmacy to get a flu shot. This all happened in February 2020 as the COVID-19 virus (SARS-2-COVID19) was just arriving at the United States. Its now September and I'm still on oxygen at home due to all the damage the virus did to my lungs, but I'm slowly improving and may not need the oxygen forever. Given I nearly died from a simple H1N1 infection which I had some immunity to because previous year flu shots since 2009 had killed H1N1 novel 2009 as one of the annual strains on most years, so I assume if I get COVID-19 in my shape, I am probably going to die. Therefore, I have both N95 masks and P100 masks and face shields and I take all precautions when I leave the home, because I'm 56 years old with my son in his first year of medical school on the way to become an orthopedic surgeon (or so he plans).
Originally Posted by Jeffn
In February of this year, I took a flu shot with H1N1-2009 novel pathogen in it, and 2 days later I was at the ER ad was admitted on the spot due to sepsis and I nearly died. I think I had one of those cytoskine storms. I had lactic acidocious and my BNP (brain natriuretic peptide) level was so high (549) it indicated heart failure. My fever was 103.7, BP was 85/40, and heart rate was 150 at rest. Initially they didn't know what I had, but on the third night in the hospital, the test indicated I had H1N1-2009 novel flu. Supposedly we cannot get that from a flu shot, but I had been only out of the house once in 30 days around the time of that infection, and it was to go to the pharmacy to get a flu shot. This all happened in February 2020 as the COVID-19 virus (SARS-2-COVID19) was just arriving at the United States. Its now September and I'm still on oxygen at home due to all the damage the virus did to my lungs, but I'm slowly improving and may not need the oxygen forever. Given I nearly died from a simple H1N1 infection which I had some immunity to because previous year flu shots since 2009 had killed H1N1 novel 2009 as one of the annual strains on most years, so I assume if I get COVID-19 in my shape, I am probably going to die. Therefore, I have both N95 masks and P100 masks and face shields and I take all precautions when I leave the home, because I'm 56 years old with my son in his first year of medical school on the way to become an orthopedic surgeon (or so he plans).


That is terrible to hear. Good that you made it and are almost out of the woods. Nurses and doctors are never supposed to give live viruses to patients with immunosuppressive medication.
Oxford University is going to test Humira as a treatment to COVID-19:

https://news.yahoo.com/oxford-study...ge6mivdVl8QD09YQ04Bko7sAxOY58gVws2h-vipQ
Seems my wife got it.test coming back tomorrow. The symptoms are vomiting, fever, muscles aches, dizziness. Either she is first or I already had it last week, what I attributed to be muscle fever after first time jogging in 3 years. But what a muscle fever that was! The first night the pain in my legs was so severe that I had to give in with the whole of myself to it if I wanted to get at least couple of hours sleep. The eyeballs were also hurting me like crazy so I thought uveitis was back but it wasn’t just dry eyes. The pain in legs muscles lasted for 5 days and became stronger at night almost unbearable. I don’t know if this was it and now my wife battles with it in her way or i just had muscles fever and that bastard coming for me next. The weird part of it now I am stuck with my 13 old niece in quarantine since we had her over the weekend before my wife developed symptoms. If test happen to be positive it will be a very long 2 weeks for me working from the room with hyper active niece beside me. Jolly times!
little update (please let me know if not appreciated),
my wife`s test came back positive on Sunday and she really had hard times for the past 3 days with today finally temperature dropping but developed slight chest pain while coughing.
As for me, the AS people, I lost a sense of taste & smell (along with stuffed nose but not running, it is like a little burning there very dry) and literally I cannot smell Coffee nor taste dried cloves. Apart from that and the pervious weeks muscles aches + occasional cough (1 time per hour) thats pretty much all for the moment.
I don`t take any meds for AS since 1 year.
Hey Achala, Please take good care of yourself. Am upset to hear what you guys are going through. Please keep us posted as to how you guys pull through. Are ya'll taking anything for symptoms or to treat it?
Danielle
Hello Danielle, thank you for the kind words. It seems we pulled it trough. My wife still on antibiotics but already working from home. For me I was taking tons of D3, zinc & others and seems i was mostly asymptomatic, of course beside the loss of smell and muscles aches. Of course I don’t know what’s going on beneath that inside my body but it is relieving to see AS did not restart. Another 8 days of quarantine and we will take the tests. After that 1 in the bag wink
Originally Posted by PsSpa_M_1989
Oxford University is going to test Humira as a treatment to COVID-19:

https://news.yahoo.com/oxford-study...ge6mivdVl8QD09YQ04Bko7sAxOY58gVws2h-vipQ
[quote=PsSpa_M_1989]Oxford University is going to test Humira as a treatment to COVID-19:

I almost choked when I read this. I think it’s great and I need more because I’m getting worse. However, when I saw my pcp in September, I also found I need more cancer screenings due to my use. It’s sobering in that my health is tanking a bit and getting older is kind of stinking.

Oh well...onward and upward
Elaine
Tocilizumab (Actemra) effective in treating sickest COVID-19 patients:

https://www.umcutrecht.nl/en/over-o...ve-in-treating-sickest-covid-19-patients
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