Autoimmune Disorders/Immunosuppresion and COVID Vaccines

[Earth Mother 2 Angels]

((((((Hugs to All)))))) ~

After I read funnylegs4’s post about the COVID vaccine risk for people on blood thinners in the Stroke Forum, I decided to research whether there is a risk for people, who are immunocompromised or have autoimmune disorders.

So far, I’ve found and read two articles:


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As I expected, the COVID vaccines haven’t been tested on people with autoimmune disorders or who are immunocompromised from chemotherapy.

I think that would apply to a majority of BrainTalk members, but especially the MS/SPS forum members.

I have RA and Psoriasis, and while not diagnosed, probably osteoporosis. At this point, I believe I’d be considered at risk for the COVID vaccine.

The articles advise us to consult our physicians on the safety of the vaccine, if we have an autoimmune disorder and/or are immunocompromised from chemo or similar drug therapy, including steroids. That seems to put tremendous pressure on our physicians. How do they know whether it is safe, if it has not been tested on people with autoimmune diseases? They are just throwing darts in the dark.

The year before his cancer diagnosis, Jim had a horrible RA flare. Our family doctor referred him to a rheumatologist, and then he insisted that Jim have a pneumonia vaccine while he was in the office. An hour after Jim came home, he was in bed, where he stayed for 10 days. His arm hurt for at least 6 months from the injection.

For those, who have an autoimmune disorder, the articles try to give us hope that we will benefit from herd immunity. How large is our herd of people with autoimmune disorders, rare conditions, who are taking some kind of immuno-supressing drug? I’m guessing it is in the multi millions.

I’m certain that the number of people in America, who have a disabling condition is much larger than statistics might indicate. One reason is because the Census never asks about disabilities. Another reason is that many residents in the U.S. do not have access to appropriate health care. They could have an assortment of medical conditions, which are undiagnosed.

So, there is probably a large swath of people, who might not fare well on these vaccines. I’ve been avoiding the news a little, so I don’t know whether this potential
problem is being discussed in major media outlets. It should be, because we can’t just expect our physicians to know and warn us it could be unsafe. They should, of course, but we can’t expect it.

A few weeks ago, John asked me if I intended to take the vaccine, when it became available, and I responded, “I don’t know. Right now, I’m thinking that I won’t. I know that it hasn’t been tested on people like me, because that’s how it works and always has with Big Pharma.”

I know this, because I devoted 50 years to researching drugs to help my children, parents, family, friends, and of course, Jim. The first thing I look for is drug interactions, and the second thing is side effects, especially “rare” side effects.

Of course, I am certainly not advocating that anyone, who wants a vaccine, not get one, or actually two as required for efficacy. I’m just providing you with information.

I’m not a scientist or a qualified medical professional by any means. I am a proponent of research and informed decision-making.

And, I love you.

Be well, be safe, be strong.

Here is the link to funnylegs4’s post in the Stroke Forum:

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Love & Light,



Rose

*Virtual Hugs Are Germ-Free!

[agate]

Rose, thank you for digging up this very useful information.

There are people here who are taking some MS drugs that would cause them to be immunocompromised--and apparently the COVID-19 vaccine might not be a good idea for them--just yet, anyway.

Others are taking no MS drugs or are taking drugs that modulate the immune system but don't suppress it. It's probably OK for this group to get the vaccine, except that MS is often classified as an autoimmune disorder now, and so maybe not.

The one autoimmune disorder mentioned in your second link that would be a problem so far as the COVID-19 vaccine is concerned is lupus. But I've heard some doctors say on TV news programs that anyone with an autoimmune disorder might not be a candidate for this COVID-19 vaccine.

As I said somewhere else on this board, I have doubts about a vaccine that has been rushed through in this way. And as so often happens, the drug was tested only on healthy people. They just don't know what it might do to older people or people who have a chronic disorder.

That generic Copaxone is sitting in my fridge waiting for some more materials to come my way and maybe a nurse appointment for the first shot. Since it just might offer some protection against COVID-19, I'm going ahead with it and am still thinking about the COVID-19 vaccine.

It may be a while before I'll need to decide. The first people to be vaccinated will be health-care workers and people in nursing homes. They won't get around to seniors in apartment buildings for a while. For one thing, I doubt that they're going to bring the vaccine to us. It would be too big a problem in social distancing. So all of us would need to travel somewhere twice to get vaccinated. This won't be so easy for some of us here.

However, I will do it if it seems like a good idea.

Just to put this into perspective, the 1918 flu pandemic lasted about a year and killed 675,000 Americans. This 2019-2020 pandemic has lasted nearly a year now and has killed 300,000. So the 1918 flu seems to have been a much more brutal killer.

Many of us here already lead fairly isolated lives. We might just be better off without the COVID-19 vaccine though, like Rose, I wouldn't want to try to influence anyone one way or the other.

[Howie]

Well, unless I'm somehow FORCED to take this vaccine, I don't plan to get it. Like Agate noted, it has been rushed through the approval process. As little as I even go out of the house, I will wear a mask until my life ends if need be.

[agate]

I don't much mind having to wear a mask. I'm gradually learning how to keep my glasses from fogging up and my hearing aids from dropping out. It's a bit tricky but worth it. I keep my masks right by the front door so that if anyone comes to the door, I can yell out "Wait a minute please" while I tie the mask on. Sometimes during the day I wear it hanging around my neck so I need to tie only the top tie if someone is at the door.

Because of the hearing aids, I don't have the masks that hook behind the ear. Those are probably easier to whip on and off.

[funnylegs4]

Thanks so much for sharing my post and for taking the time to research this Rose. We need as much scientifically valid info on these vaccines that we can get. We are purposed to go to our doctors anytime we take a new drug to ensure it is safe, so it's just a matter of the doctors having the right info. I think doctors like and need to be asked these questions. I'm open minded but cautious with the new vaccines. It will be a long while before healthy folks with Cerebral Palsy are on the "Get vaccinated now" list anyway I'm guessing, so I have time to see what the research by doctors turns up. I don't want it to be like the drugs on TV where 6 months later you see lawyers suing for liver and bladder damage etc. I'm hoping it turns out like a safe flu shot type thing. Disability doesn't know in statistics because people are nervous to disclose due to ableism or fear of experiencing ableism, at least partly.

True agate, this virus is less deadly.

[funnylegs4]

2 doctors in NY got the vaccine. It's here...now we see if it works...

[agate]

This CDC Website seems to be giving out up-to-date information on COVID-19 and the vaccine:

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[Earth Mother 2 Angels]

((((((Hugs to All)))))) ~

agate ~

Do your masks have a sturdy bit for the bridge of your nose? I've found that having that part snug against my nose bridge stops the fogging glasses. John has been experiencing with a variety of masks, because the loops sometimes aggravate the back of his ears. The ones I use, which I can't find any longer, are made specifically to protect from viruses, and while it is comfortable on his ears, he finds it too "thick." I just laughed and told him that was the point!

I think the death toll for the Spanish Flu being larger than the current COVID toll pertains to the lack of treatments available in 1918. The medicines we have now didn't exist then, like Tylenol or Advil to control fever and pain all the way to the "Cadillac" drugs given to DT, Chris Christie, Rudy G, etc.

They didn't have the large medical facilities we have now, with state of the art ERs and ICUs, or ventilators, or even oxygen concentrators. They didn't have Haz Mat suits and other PPE for medical providers. They didn't have the vast array of antibiotics we have now to treat pneumonia and other COVID-related infections, like sepsis, UTIs. They didn't have CT scans, MRIs, biopsies, the ability to test blood for everything imaginable and get the results back within an hour.

Today, we reached 300,000 COVID deaths, and that number would be significantly less, if the person responsible for serving us as a leader had been upfront and on the ball about managing the impending pandemic. Instead, he called it a hoax and no worse than the common cold. He shunned wearing a mask as did his followers ... hence ... we lead the world in cases and deaths.

After he contracted (purportedly) COVID, he received the Cadillac treatment and was released in 3 days. My question is this: Why isn't this drug being manufactured as fast or faster than the vaccine, when it apparently works effectively to stave off the virus? One answer is that it costs $10k. Well, so does one chemo infusion, but Jim got a ton of them. It's a pandemic, so what is the deal with the cost of the drug?!! Make a big batch of it and dole it out to all of the hospitals, so we can save lives! That Pharma company will still make a fortune off of it at a much reduced price, because COVID is spreading like a wildfire.

And why hasn't anyone in our government recommended that this drug be widely available in hospitals? It requires close observation, but that's what ICU is all about anyway.

If this pandemic had been handled appropriately from the start, the numbers here would be much lower. And around the globe. All we need to do is look at New Zealand. Granted it is a small island, but everyone on that island joined together to beat COVID, and now they are enjoying live concerts together.

I've watched some news today, and videos of the first vaccines given to nurses and doctors have been shown repeatedly. That is where they should begin, because these are people, who are exposed to it constantly every day. No matter how much discomfort we feel with our masks, they have to wear them all day for 12 hour shifts or more, plus change in and out of protective gear. I can relate to that on a much smaller scale, having been in ICU with my boys dozens of times, 12 hours a day for weeks and months with each stay.

I think we will learn more about the vaccine, once it has been given to more people. I think about the automatic inoculation of people in long term facilities and worry that one size doesn't fit all. If you're on a blood thinner, have an autoimmune disorder, or are otherwise compromised physically, it might have the potential to cause adverse reactions. Specifically, I'm thinking about Jeannie.

Electoral college votes were cast today. I pray for a better, brighter future for us all.

To All ~ Be safe, be well, and find a moment of peace and happiness every day.

Love & Light,



Rose

*Virtual Hugs Are Germ-Free!

[Ikoiko]

I already got an email from my neurologist and he is recommending that all his MS patients get the COVID-19 vaccine. He told me that I will be in Phase II, which starts February 21 in Massachusetts.

[Lazarus]

I already got an email from my neurologist and he is recommending that all his MS patients get the COVID-19 vaccine. He told me that I will be in Phase II, which starts February 21 in Massachusetts.

Thanks for this information. It is just what I was seeking. Do you know anything else about how you get set up for the shot?

I am getting rituxan tomorrow and hope to feel stronger immediately and get home before the snow starts! (Big storm coming to us). I worry about the infusion center but really need the rituxan. I think the pandemic situation has made me less anxious about being housebound by the snowstorm. What do you think? I think we will both be hit had by this storm.

[Ikoiko]

Linda, as far as what phase to put people in, my doctor was going off the Massachusetts COVID-19 website. So if you have MS and are also a health care worker, you would be in Phase I with all the other health care workers. That starts December 21. My doctor's office will not be giving shots, and he did not recommend where to get them.

I think our snow storm will hit Wednesday night through Thursday, and we should get about a foot where I am on the coast. Best to you if you have to go out.

[SuzE-Q]

I like the recent BART's analysis of this, I've been following along with their posts about this over the past few months:

Anti-CD20 therapies

When I initially wrote about vaccine hesitancy I suggested that pwMS on an anti-CD20 therapy (rituximab, ocrelizumab, ofatumumab) may have to delay their next infusion or miss one or two infusions to allow B-cell reconstitution before they have a coronavirus vaccine. Since making this statement more immunological data has emerged and there really is no definitive evidence to support this position.

Yes, I agree that in general people on anti-CD20 therapies have blunted antibody responses to wild-type SARS-CoV-2 infection and to other vaccines including vaccines with containing new antigens that the immune system has not seen before. However, this doesn’t mean these people haven’t developed immunity to the infection or vaccine that is long-lasting. For one the vast majority of pwMS on an anti-CD20 therapy who get COVID-19 make an uneventful recovery. Why? Almost certainly this recovery is due to cellular and not humoral (antibody) immunity and this immunity won’t vanish and is likely to persist longterm.

The only evidence base we have at the moment is the recently published VELOCE study that delayed vaccination until 4 weeks after an initial course of ocrelizumab. This study showed blunted, but not absent, antibody responses to recall and new vaccines. Based on this study if you have just had a recent course of ocrelizumab you may want to delay getting the COVID-19 vaccine until for 4 weeks after the last infusion.

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[funnylegs4]

I found this on the CDC website and it kinda explains how this vaccine was made so quickly. It's a new process.

"New Approach to Vaccines
mRNA vaccines are a new type of vaccine to protect against infectious diseases. To trigger an immune response, many vaccines put a weakened or inactivated germ into our bodies. Not mRNA vaccines. Instead, they teach our cells how to make a protein—or even just a piece of a protein—that triggers an immune response inside our bodies. That immune response, which produces antibodies, is what protects us from getting infected if the real virus enters our bodies.
A Closer Look at How COVID-19 mRNA Vaccines Work
COVID-19 mRNA vaccines give instructions for our cells to make a harmless piece of what is called the “spike protein.” The spike protein is found on the surface of the virus that causes COVID-19.

COVID-19 mRNA vaccines are given in the upper arm muscle. Once the instructions (mRNA) are inside the immune cells, the cells use them to make the protein piece. After the protein piece is made, the cell breaks down the instructions and gets rid of them.

Next, the cell displays the protein piece on its surface. Our immune systems recognize that the protein doesn’t belong there and begin building an immune response and making antibodies, like what happens in natural infection against COVID-19.

At the end of the process, our bodies have learned how to protect against future infection. The benefit of mRNA vaccines, like all vaccines, is those vaccinated gain this protection without ever having to risk the serious consequences of getting sick with COVID-19.
Facts about COVID-19 mRNA Vaccines
They cannot give someone COVID-19.

mRNA vaccines do not use the live virus that causes COVID-19.
They do not affect or interact with our DNA in any way.

mRNA never enters the nucleus of the cell, which is where our DNA (genetic material) is kept.
The cell breaks down and gets rid of the mRNA soon after it is finished using the instructions.
COVID-19 mRNA Vaccines Will Be Rigorously Evaluated for Safety
mRNA vaccines have been held to the same rigorous safety and effectiveness standardsexternal icon as all other types of vaccines in the United States. The only COVID-19 vaccines the Food and Drug Administration (FDA) will make available for use in the United States (by approval or emergency use authorization) are those that meet these standards.

mRNA Vaccines Are New, But Not Unknown
Researchers have been studying and working with mRNA vaccines for decades. Interest has grown in these vaccines because they can be developed in a laboratory using readily available materials. This means the process can be standardized and scaled up, making vaccine development faster than traditional methods of making vaccines.

mRNA vaccines have been studied before for flu, Zika, rabies, and cytomegalovirus (CMV). As soon as the necessary information about the virus that causes COVID-19 was available, scientists began designing the mRNA instructions for cells to build the unique spike protein into an mRNA vaccine.

Future mRNA vaccine technology may allow for one vaccine to provide protection for multiple diseases, thus decreasing the number of shots needed for protection against common vaccine-preventable diseases.

Beyond vaccines, cancer research has used mRNA to trigger the immune system to target specific cancer cells.

Source:
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[Lazarus]

Linda, as far as what phase to put people in, my doctor was going off the Massachusetts COVID-19 website. So if you have MS and are also a health care worker, you would be in Phase I with all the other health care workers. That starts December 21. My doctor's office will not be giving shots, and he did not recommend where to get them.

I think our snow storm will hit Wednesday night through Thursday, and we should get about a foot where I am on the coast. Best to you if you have to go out.

Thanks! I was getting my rituxan the day before it snowed. What luck! We got about a foot of snow and it was very light. It is almost gone from the farm’s roadways now but there are huge piles all over the farm! I just heard Fauci talking and he said that people who received monoclonal antibodies should maybe weight for 3 months before getting the vaccine. Isn’t that what rituxan is? Monoclonal antibodies? (It is 12/21 about 6:30 pm as I write this).
Uc

[Earth Mother 2 Angels]

((((((Hugs to All)))))) ~

funnylegs4 ~

Thank you for sharing the CDC information on the vaccine.

I have seen interviews with people, who have received the vaccine, and so far no one is reporting any untoward effects from it. The wait is 3 weeks before the second dose. With luck, the absence of reactions will continue after the second dose.

Jim received Opdivo, immunotherapy, infusions, which is an mRNA drug. It triggered a severe RA flare, for which he took Prednisone. This is why I am concerned about getting the COVID vaccine, since I have RA and psoriasis.

Time will tell whether this should be a concern, and hopefully, we will learn more about the safety of it for MS patients.

Love & Light,



Rose

*Virtual Hugs Are Germ-Free!