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Re: Coronavirus and Spondyloarthritis: Your Questions, PsSpa_M_1989 03/29/20 02:16 AM
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
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Coronavirus and Spondyloarthritis: Your Questions, Mary Beth 03/28/20 07:11 PM
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.
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Coronavirus and Spondyloarthritis: Your Questions, WhiteCell 03/28/20 12:36 AM
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.
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Coronavirus and Spondyloarthritis: Your Questions, PsSpa_M_1989 03/27/20 03:31 PM
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
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Coronavirus and Spondyloarthritis: Your Questions, Winston 03/26/20 01:38 PM
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.
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Coronavirus and Spondyloarthritis: Your Questions, RAHMBA 03/25/20 12:40 AM
Winston, I agree, I think we should encourage people with SpA to check in. with or without COVID19. to see how people are doing.
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Coronavirus and Spondyloarthritis: Your Questions, 2789 03/24/20 11:38 PM
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.
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Has anyone ever tried Beta-glucan? Imnotsure 03/24/20 11:23 PM
I think I'm getting a flare-up from just reading about it.
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Has anyone ever tried Beta-glucan? TexasRider67 03/24/20 09:04 PM
Yea there is a lot of great benefits for whom ones immune system may be one way or the other, but for us this should cause a flair up. So I’m very interested in hearing from people on the affects this had!

And thank you for the welcome, I had another account years ago but forgot login and email attached
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Coronavirus and Spondyloarthritis: Your Questions, Winston 03/24/20 02:24 PM
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Complications and Long Term Medical Issues Jump to new posts
Re: Valley fever with meningitis theyoungestmuse 03/24/20 02:12 PM
I have followed Eric's story and really feel for you guys While you and your family sound strong, I hope your family will get a break soon to help you feel safer and more secure. And that Eric's infection will go into remission. Is fluconazole the only antifungal he has been on? Professional curiosity.
Danielle
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Complications and Long Term Medical Issues Jump to new posts
Re: Valley fever with meningitis momchrisgr 03/24/20 06:20 AM
We are living great changes since we are obliged to do everything online and in distance. From one point of view, this is good for immuno compromised or for those who are in pain and cannot walk...
Hope you find strength
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Has anyone ever tried Beta-glucan? Ken Delano 03/23/20 09:14 PM
Neither my Rhuem or Pharm recommend trying this.....
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Complications and Long Term Medical Issues Jump to new posts
Re: Valley fever with meningitis Ericsmom 03/23/20 08:08 PM
Eric was released on Wed. only because there were suspected cases of COVID-19 in the hospital and they did not want him there anymore. He has moved in with us and is stable for now. He sleeps 15+ hours a day and we have to monitor his temperature and keep it down with tylenol/ibuprofen. He is on the maximum dosage of the anti-fungal med diflucan. His latest MRI showed inflammation in the meninges at the back of his head, which confirms his diagnosis of cocci meningitis- Valley Fever induced meningitis. His first appointment with his long-term Infectious Disease doctor was a phone appointment and she will monitor his progress remotely for now. He will continue with a high dose anti-fungal until they get the infection under control and will then drop to a maintenance level for the rest of his life. His thinking is really fuzzy right now and he is very lethargic. He is supposed to graduate from his grad program in May and hopefully can still do so since his school has gone to on-line. Right now he has a hard time reading or focusing so not sure if he will be able to do the work or not. I worry about being near him as my job is considered "essential" so I am still working in an office- we are taking extreme measures to separate ourselves so I am just being very careful. My husband retired in February and is 65 so is trying to stay home to minimize contact, but ...get this....he was recently impaneled on a Federal Grand Jury that meets once a week for the next year in downtown LA and IS NOT CANCELED. He just received direction that the Grand Juries will continue to meet in downtown LA- where he has to walk through homeless encampments to get to the courts. He is asking for a waiver because we are so worried he will bring COVID-19 home with him.

With all that is going on right now, there are so many of you who are immuno compromised and who must be constantly worrying. I hope everyone is able to stay isolated and safe!!!
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Re: Has anyone ever tried Beta-glucan? Ken Delano 03/23/20 11:48 AM
Talk about perfect timing.
Not yet......but I do find the info very interesting. I'm also a Diabetic and there is some evidence that it may be beneficial for that too. I'm waiting to hear back from my Pharmacist about it.

First time post. Welcome to the SAA Forum.
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Has anyone ever tried Beta-glucan? TexasRider67 03/23/20 04:10 AM
I’m wondering if anyone here has tried beta glucan for other conditions, theoretically it should cause a flair up according to this study. Did you feel better or worse on it?!

https://pubmed.ncbi.nlm.nih.gov/22328069/
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