Hydroxicloriquine-Lupus(Autoimmune)-Prednisone & COVID19 Vaccine?

Posted by Darlia @darlia, Feb 20 3:39am

Greetings~

My name is Darlia.. Recently diagnosed (Sept) with Lupus. Had symptoms most of my life. You know how hard it is to get this diagnosis.
So no besides the other numerous AUTOIMMUNE diseases I have now I have the concern over the COVID19 vaccine
*I am taking 200 mg of Hydroxicloriquine 2 x a day.
*I stopped taking prednisone a few days ago –
Had only taken for 45 days.
I was on a small dose of 2.5 mg a day.
*I am taking Synthroid 100 mg 2 x a week and 50 mg the other 5 days.
*I am taking Lyrica 50 mg 3 x a day.
*I am taking Folic Acid 1mg a day
*Recently stopped taking Atrovastatin for cholesterol
*I have CKD. And only 1 kidney
*I have Peripheral Neuropathy
*I have been told I have Gout by my rheumatologist but haven’t had the extensive tests yet, just one blood lab and a suspicion about a callus on my foot as having the tophi.
I am mostly concerned about the interaction of the vaccine with the Hydroxicloriquine because this medication lowers the bodies ability to fight infection as well as the prednisone, which I’ve only stopped a few days ago.
I am scheduled to get the vaccine (#1) on Thursday.
It’s the Moderna one BTW.
So any medical advice I can get that’s real, true and non biased will be appreciated
Thank you
Darlia

Darlia, I have system sclerosis, RH, CK stage 3 moderate, Hashimoto Disease, autoimmune allergies, COPD severe, and ILD. I am on Hydroxicloriquine 600mg, predisone 5mg daily, leflunomide 20 mg, as well as thyroid, blood pressure, lasix, multiple different inhalers and nebulizers. My RH says that even with me having extreme allergic reactions that as long as I am monitored it is okay and highly recommended that our groups get the vaccine. It will take us longer to build the antibodies and both shots should be taken. I for myself fear getting it as the flu and pneumonia shots have both caused anaphylaxis in the past.
Here is a site I refer to for answers about covid
https://www.cdc.gov/coronavirus/2019-ncov/vaccines/recommendations/underlying-conditions.html
https://www.who.int/news-room/q-a-detail/coronavirus-disease-(covid-19)-vaccines?adgroupsurvey={adgroupsurvey}&gclid=CjwKCAiAg8OBBhA8EiwAlKw3khDyEqHejbJwJBivurG_XEMhefCw7ex04XBoIIuP1iUPuaMC7TSJ6hoCcwMQAvD_BwE

REPLY

@darlia Considering your medications it's understandable you would want to educate yourself before getting the COVID-19 vaccine.

@devonsnana Thank you for the reliable resources that you linked and your testimonial.

@darlia You will notice that I added your question to the COVID-19 group. I did this so you could not only connect with members like @pinchas @joybringer1 @nana75165 @artist01 @boomerexpert @gailiebird @susandenise @ske22 @dinoman @olduncledave @migizii @fiesty76 @silverwoman @contentandwell in both groups.

Below I have linked discussions that you may wish to scroll through for information regarding the COVID-19 vaccine and other health issue.
– Are there medicines that should be paused before COVID vaccine? https://connect.mayoclinic.org/discussion/covid-vaccine-reaction-with-medicine/
– To vaccinate or not to vaccinate? That is the question. https://connect.mayoclinic.org/discussion/to-vaccinate-or-not-to-vaccinate-that-is-the-question/

Did you have a chance to ask a provider or your pharmacist about intercations between your medications and the vaccine?

REPLY
@devonsnana

Darlia, I have system sclerosis, RH, CK stage 3 moderate, Hashimoto Disease, autoimmune allergies, COPD severe, and ILD. I am on Hydroxicloriquine 600mg, predisone 5mg daily, leflunomide 20 mg, as well as thyroid, blood pressure, lasix, multiple different inhalers and nebulizers. My RH says that even with me having extreme allergic reactions that as long as I am monitored it is okay and highly recommended that our groups get the vaccine. It will take us longer to build the antibodies and both shots should be taken. I for myself fear getting it as the flu and pneumonia shots have both caused anaphylaxis in the past.
Here is a site I refer to for answers about covid
https://www.cdc.gov/coronavirus/2019-ncov/vaccines/recommendations/underlying-conditions.html
https://www.who.int/news-room/q-a-detail/coronavirus-disease-(covid-19)-vaccines?adgroupsurvey={adgroupsurvey}&gclid=CjwKCAiAg8OBBhA8EiwAlKw3khDyEqHejbJwJBivurG_XEMhefCw7ex04XBoIIuP1iUPuaMC7TSJ6hoCcwMQAvD_BwE

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@devonsnana ..thank you for your response.
We have some of the same autoimmune diseases and then some different.. I am concerned about the reaction to the vaccine too because I have that sensitivity to epinephrine that happens where you receive a numbing shot at the dentist (it contains epinephrine) and I get instant palpitations and my heart speeds up as in the pulse. My chests feels this fast heart rate and it continues for about 10 min- 1/2 hour. I was told by my endocrinologist to tell the dentist's to use the other kind of numbing shot without the epinephrine. To avoid the problem of the palpitations and being shakey for 1/2 an hour which is a danger to your heart. I usually have them put it in my file. Not always do the dentist's CHECK though! So I have to verbally bring it up.

I've forgotten to tell a dentist and then boom! Too late. There it goes again.
My experience without it was much different. No problems then.
There is one drawback. The numbing shot without the epinephrine doesn't stop the bleeding as well, so on an extraction you will need more. I therefore, recently had an extraction and took the regular numbing shot and the epinephrine to avoid excessive bleeding. (Against my endo dr's advice,)

So because I am so sensitive to outside agents, which affect my~ ENDOCRINE SYSTEM~ I am asking for guidance on this issue as well as to if there has been scientific data put out on the RISK to taking this Moderna vaccine.
Our county is going to give our group the Moderna this next Thursday, so I don't have much time to decide!

Also, I was sensitive to getting ALLERGY tested this last year. When the medical assistant put the square with all of the types of possible substances you can be allergic to on my arm (it pricks your skin with like 20 or 30 at a time) then said we had to wait ..after less than 5 minutes I started to have racing heart feeling and tightness in my throat..
So I pressed the button for help that he left me with.
He quickly removed the testing and wiped my arm off. He took my BP and said it wasn't abnormal but that his head dr said to not proceed with the test but instead they would do a blood test to find out what I was allergic to.
The symptoms went away ..subsided ..after he removed the allergens from my arm FYI.
He said it was highly irregular and that this isn't a "normal" reaction that they usually see.. I said I am never "normal" and if something is rare, I will get it or it will happen to me when.it comes to medicine.
I'm that person who it will happen too in the part of the drug warnings of "this is a rare side effect"!!
🤔🙄..
And then the time, I had a flu shot or my pneumonia 2nd shot given to me at Walgreens. I can't recall which one it was. So about 15 min – 1/2 hour later I start getting a rashy type thing in and around the area. It felt warm to touch too. I told them I thought it was a reaction. They retorted that it was just a normal reaction to a shot..
Guess what. I was right!
It got red, inflamed and rashy all the way down to my elbow.
I went to URGENT CARE. They said it looked like staph under the skin or what is it, phlebitis? Infection like staph but under the skin. Antibiotics to the rescue!
I said well the only way I could have that would be that the person giving the vaccine wasn't careful about cleaning everything involved then.(I am assuming)
So I don't know if this would be relevant, but figured I'd add it, in case.
Another point… I was tested by lab in CA called AVISE. THEY do the deep detail testing for autoimmune markers and antibodies and the markers. I was tested for Lupus, RA and thyroid is.
The results came back for very high autoimmune is reference to the thyroid. Already being treated for Hashimoto's thyroiditis, no surprise on that.
And.. the ANA markers for a few things were positive. Finally after years of clinical symptoms got diagnosed for Lupus (in Sept '20)
Taking Hydroxychloroquine 200 2x a day. Just stopped prednisone this last week and I read that it stays in your system.
With hydroxychloroquine, I was told by the pharmacist and another person who takes it, it lowers your immune system.
So looking for answers here on Mayo Connect to should I get the vaccine or no it? I used to be very active on Mayo Connect years ago, but haven't now been using it as a source on a regular basis for about 4 yrs.
Darlia

REPLY
@erikas

@darlia Considering your medications it's understandable you would want to educate yourself before getting the COVID-19 vaccine.

@devonsnana Thank you for the reliable resources that you linked and your testimonial.

@darlia You will notice that I added your question to the COVID-19 group. I did this so you could not only connect with members like @pinchas @joybringer1 @nana75165 @artist01 @boomerexpert @gailiebird @susandenise @ske22 @dinoman @olduncledave @migizii @fiesty76 @silverwoman @contentandwell in both groups.

Below I have linked discussions that you may wish to scroll through for information regarding the COVID-19 vaccine and other health issue.
– Are there medicines that should be paused before COVID vaccine? https://connect.mayoclinic.org/discussion/covid-vaccine-reaction-with-medicine/
– To vaccinate or not to vaccinate? That is the question. https://connect.mayoclinic.org/discussion/to-vaccinate-or-not-to-vaccinate-that-is-the-question/

Did you have a chance to ask a provider or your pharmacist about intercations between your medications and the vaccine?

Jump to this post

Hi John,

Yes, I've discovered that Hydroxicloriquine and prednisone BOTH lower your immune system for infection, so I am concerned too because I heard that taking the vaccine will lower your ability to resist infection too. Plus having as thyroid condition, Hashimoto's thyroiditis is only one of my many autoimmune disorders. The endocrine system .. and my autoimmune markers specifically for the thyroid are really high which shows up in my labs and tells me that even while on medication, the autoimmune markers are high so then how does that equate to if it's ok or not to take the vaccine? That's what I'm trying to find out. Don't feel bad if no one at Mayo knows the answers. The CDC post on their own website under Autoimmune disorders doesn't even know. Here it is,:

★People who have autoimmune conditions
People with autoimmune conditions may receive an mRNA COVID-19 vaccine. However, they should be aware that no data are currently available on the safety of mRNA COVID-19 vaccines for them. Individuals from this group were eligible for enrollment in clinical trials.

But you can see. There are NO, ZERO clinical trial info listed. They have nothing!
Darlene

REPLY
@darlia

Hi John,

Yes, I've discovered that Hydroxicloriquine and prednisone BOTH lower your immune system for infection, so I am concerned too because I heard that taking the vaccine will lower your ability to resist infection too. Plus having as thyroid condition, Hashimoto's thyroiditis is only one of my many autoimmune disorders. The endocrine system .. and my autoimmune markers specifically for the thyroid are really high which shows up in my labs and tells me that even while on medication, the autoimmune markers are high so then how does that equate to if it's ok or not to take the vaccine? That's what I'm trying to find out. Don't feel bad if no one at Mayo knows the answers. The CDC post on their own website under Autoimmune disorders doesn't even know. Here it is,:

★People who have autoimmune conditions
People with autoimmune conditions may receive an mRNA COVID-19 vaccine. However, they should be aware that no data are currently available on the safety of mRNA COVID-19 vaccines for them. Individuals from this group were eligible for enrollment in clinical trials.

But you can see. There are NO, ZERO clinical trial info listed. They have nothing!
Darlene

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@darlia– Good morning. It is true that certain medications and their interaction with the Covid-19 vaccine will change how your immune might react. What may be concerning is if you are in a flare-up or if your Rheumatologist precautions you against having a particular vaccine. There are studies going on now for many different illnesses and diseases. It's only been a year since we've had this virus so not every group has been tested. I'm sure that there will be many changes that we will see in the future.

This site might have some answers for you:
https://www.lupus.org/resources/covid19-vaccine-and-lupus#
I have Discoid Lupus that has been in remission for years. I'm very, very lucky. When it was active I did take Plaquenil. My twin had Systemic Lupus, as you do and I can concur that it's one very lousy illness. I give you a lot of credit for being on here for support and offering it.

How are you doing?

REPLY
@merpreb

@darlia– Good morning. It is true that certain medications and their interaction with the Covid-19 vaccine will change how your immune might react. What may be concerning is if you are in a flare-up or if your Rheumatologist precautions you against having a particular vaccine. There are studies going on now for many different illnesses and diseases. It's only been a year since we've had this virus so not every group has been tested. I'm sure that there will be many changes that we will see in the future.

This site might have some answers for you:
https://www.lupus.org/resources/covid19-vaccine-and-lupus#
I have Discoid Lupus that has been in remission for years. I'm very, very lucky. When it was active I did take Plaquenil. My twin had Systemic Lupus, as you do and I can concur that it's one very lousy illness. I give you a lot of credit for being on here for support and offering it.

How are you doing?

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Hi Merry,
Thank you. I just take it day by day. Hour by hour. It's just another day. Like that movie groundhog day.
I have the Lupus that's Autoimmune my rheumatologist says. Is that systemic?
They are telling me I have gout too. But I'm not convinced until they run more tests first. Wanted me to take methotrexate. I said no to that for now. . Because they want me to take it to get me ready for infusion for gout. Without all of the gout testing other than one regular lab, it's not for sure so I said no.
The insurance company won't even approve it without more tests.
So my days are filled with medical research or medical this or medical that in between trying to do normal everyday functions like taking a shower, dressing, doing laundry, taking care of bills, making meals. I'm doing good to get one or two at most.
So the Dr.'s I have all tell me to get the vaccine because I'm in the high risk group. I have many reasons to not get it though.
I think I will probably make the decision to wait. See how it goes. My husband is high risk group too. So he will get it this Thursday.
Oh ya, I have CKD, only one kidney as I lost the right one to cancer in 2008..
Peripheral neuropathy caused by a rare antibody Gene, fibromyalgia, osteoarthritis.. suspect Seorjuines Phenomenon disorder too. Spelled wrong.
There's more but that's okay.
Thank you for any info you have on this issue.
Darlene

REPLY

COVID-19 vaccine

I would like to know if a young person with Autoimmune disease should take the COVID 19 vaccine. Thank you!</p>

REPLY

Welcome to Mayo Clinic Connect, a place to give and get support.

COVID-19 is a new virus and everyone should understand the vaccine. This is especially true for people with underlying conditions.

Below I have linked the CDC's guidance related to people with autoimmune disorders and the COVID-19 vaccine.
– Vaccine Considerations for People with Underlying Medical Conditions https://www.cdc.gov/coronavirus/2019-ncov/vaccines/recommendations/underlying-conditions.html

You will notice that I combined your two identical posts and I added your question to a previous discussion related to the COVID-19 vaccine and people with autoimmune disorders. I did this so you could connect with members like @merpreb @devonsnana @pinchas @joybringer1 @nana75165 @artist01 @boomerexpert @gailiebird @susandenise @ske22 @dinoman @olduncledave @migizii @fiesty76 @silverwoman @darlia who may be able to help answer your question. You will also notice that this discussion is in both the autoimmune page and the COVID-19 page.

May I ask if you have consulted with your provider that manages your autoimmune disease care?

REPLY
@erikas

Welcome to Mayo Clinic Connect, a place to give and get support.

COVID-19 is a new virus and everyone should understand the vaccine. This is especially true for people with underlying conditions.

Below I have linked the CDC's guidance related to people with autoimmune disorders and the COVID-19 vaccine.
– Vaccine Considerations for People with Underlying Medical Conditions https://www.cdc.gov/coronavirus/2019-ncov/vaccines/recommendations/underlying-conditions.html

You will notice that I combined your two identical posts and I added your question to a previous discussion related to the COVID-19 vaccine and people with autoimmune disorders. I did this so you could connect with members like @merpreb @devonsnana @pinchas @joybringer1 @nana75165 @artist01 @boomerexpert @gailiebird @susandenise @ske22 @dinoman @olduncledave @migizii @fiesty76 @silverwoman @darlia who may be able to help answer your question. You will also notice that this discussion is in both the autoimmune page and the COVID-19 page.

May I ask if you have consulted with your provider that manages your autoimmune disease care?

Jump to this post

Thank you, Mary
Yes, my doctor advice to take the vaccine but I would like to know the experience of other people with similar disease to know if they already took it and if they had side effects.

Thank you
Emma

REPLY
@emmaar

Thank you, Mary
Yes, my doctor advice to take the vaccine but I would like to know the experience of other people with similar disease to know if they already took it and if they had side effects.

Thank you
Emma

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@emmaar– Hi, again Emma. Would you mind answering a couple of questions so I can learn more about you? How old are you and what is your autoimmune disease and how long have you had it?
Merry

REPLY
@merpreb

@emmaar– Hi, again Emma. Would you mind answering a couple of questions so I can learn more about you? How old are you and what is your autoimmune disease and how long have you had it?
Merry

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Hi Merry,
Thank you for the information.
But it only indicates that “People with weakened immune systems due to other illnesses or medication might be at increased risk for severe COVID-19. They may receive a COVID-19 vaccine. However, they should be aware of the limited safety data:
Information about the safety of COVID-19 vaccines for people who have weakened immune systems in this group is not yet available”
As information about safety is not yet available, I was wondering if you have information about the side effects in people with systemic autoimmune diseases.
Or any of the members of this group.
If any has already received the vaccine with AD.
Thank you!

REPLY
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