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

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

<p>Greetings~</p><p>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.<br />So no besides the other numerous AUTOIMMUNE diseases I have now I have the concern over the COVID19 vaccine<br />*I am taking 200 mg of Hydroxicloriquine 2 x a day.<br />*I stopped taking prednisone a few days ago -<br />Had only taken for 45 days.<br />I was on a small dose of 2.5 mg a day.<br />*I am taking Synthroid 100 mg 2 x a week and 50 mg the other 5 days.<br />*I am taking Lyrica 50 mg 3 x a day.<br />*I am taking Folic Acid 1mg a day<br />*Recently stopped taking Atrovastatin for cholesterol<br />*I have CKD. And only 1 kidney<br />*I have Peripheral Neuropathy<br />*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.<br />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.<br />I am scheduled to get the vaccine (#1) on Thursday.<br />It's the Moderna one BTW.<br />So any medical advice I can get that's real, true and non biased will be appreciated<br />Thank you<br />Darlia</p>

Hi all,
On Dr. Poland's podcast next week (March 16), Mayo Clinic infectious diseases specialist will be answering questions related to the vaccine and autoimmune diseases. Please follow the Podcast page to be alerted when new podcasts are uploaded here: https://connect.mayoclinic.org/page/podcasts/

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Thank you for posting this. Very important!

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@darlia

@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

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Darlia, I was just told by my nephrologist on Wednesday that even though there is no data that even with all my allergic reaction I should still consider taking the vaccine but to do so only in a medical setting. When I told him I did not feel there is enough data as of yet for those of us with multiple autoimmune diseases for the safety and efficacy of the vaccine he told me to monitor the drug companies closely that one is working on a pill form for those extremely sensitive to vaccines. Just the stress of dealing with the daily fear of contracting covid-19 and the fact that even with all the medications my markers are still increasing and not decreasing I cannot chance an adverse reaction. My CKD is now midrange stage 4, thyroid hormones almost totally depleted so more medication changes. As you, just being able to do the minor things around the house are good days. It is a lonely disease and tired of explaining to others because it is a silent disease so unless someone understands it they are blind to it. Being frustrated with the decrease in eyesight but knowing that vision is a trade off to the medications to at lease maintain a minimal daily function. At this point I am staying quarantined as our area people not only will not mask but will bully those that do. It's not worth the headache. I am not as active on Mayo Connect as I should be but do read it everyday. I will continue to monitor the different vaccine companies for more relevant data but after years of being a guinea pig as a military dependent I am going to wait and see. If this changes I will share info. I have 2 adult children that has received the vaccine. I know the daughter that has Hashimoto had more side affects than the daughter that has no autoimmune disorders.
Devonsnana

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@emmaar

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!

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Hi @emmaar and @devonsnana I, too, was worried about taking the Covid vaccine, but I went ahead. My AD is not systemic like yours, it’s in my brain. I was on monthly chemo and 20mgs of prednisone but my doctor encouraged me to get the vaccine. I’m 2 months out now and doing well. Haven’t even had a cold! Can you think of anything that might make you willing to get the shot?

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@devonsnana

Darlia, I was just told by my nephrologist on Wednesday that even though there is no data that even with all my allergic reaction I should still consider taking the vaccine but to do so only in a medical setting. When I told him I did not feel there is enough data as of yet for those of us with multiple autoimmune diseases for the safety and efficacy of the vaccine he told me to monitor the drug companies closely that one is working on a pill form for those extremely sensitive to vaccines. Just the stress of dealing with the daily fear of contracting covid-19 and the fact that even with all the medications my markers are still increasing and not decreasing I cannot chance an adverse reaction. My CKD is now midrange stage 4, thyroid hormones almost totally depleted so more medication changes. As you, just being able to do the minor things around the house are good days. It is a lonely disease and tired of explaining to others because it is a silent disease so unless someone understands it they are blind to it. Being frustrated with the decrease in eyesight but knowing that vision is a trade off to the medications to at lease maintain a minimal daily function. At this point I am staying quarantined as our area people not only will not mask but will bully those that do. It's not worth the headache. I am not as active on Mayo Connect as I should be but do read it everyday. I will continue to monitor the different vaccine companies for more relevant data but after years of being a guinea pig as a military dependent I am going to wait and see. If this changes I will share info. I have 2 adult children that has received the vaccine. I know the daughter that has Hashimoto had more side affects than the daughter that has no autoimmune disorders.
Devonsnana

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@devonsnana You said how AD are very lonely because no one sees you as sick. I feel that way too. Then, I found this article and it has helped
https://connect.mayoclinic.org/discussion/how-do-you-plan-your-day-and-conserve-energy-are-you-a-spoonie/
I put in the wrong article! Sorry. This one is much better. It’s about the loneliness we feel because “we don’t look sick.”
https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

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@becsbuddy

Hi @emmaar and @devonsnana I, too, was worried about taking the Covid vaccine, but I went ahead. My AD is not systemic like yours, it’s in my brain. I was on monthly chemo and 20mgs of prednisone but my doctor encouraged me to get the vaccine. I’m 2 months out now and doing well. Haven’t even had a cold! Can you think of anything that might make you willing to get the shot?

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Thank you Becky!
I think that I would like to know the experience of people with nephrotic syndrome.
In my opinion we could wait until healthy people get the vaccine but we have to follow the indications of our doctors.
Thanks

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@devonsnana

Darlia, I was just told by my nephrologist on Wednesday that even though there is no data that even with all my allergic reaction I should still consider taking the vaccine but to do so only in a medical setting. When I told him I did not feel there is enough data as of yet for those of us with multiple autoimmune diseases for the safety and efficacy of the vaccine he told me to monitor the drug companies closely that one is working on a pill form for those extremely sensitive to vaccines. Just the stress of dealing with the daily fear of contracting covid-19 and the fact that even with all the medications my markers are still increasing and not decreasing I cannot chance an adverse reaction. My CKD is now midrange stage 4, thyroid hormones almost totally depleted so more medication changes. As you, just being able to do the minor things around the house are good days. It is a lonely disease and tired of explaining to others because it is a silent disease so unless someone understands it they are blind to it. Being frustrated with the decrease in eyesight but knowing that vision is a trade off to the medications to at lease maintain a minimal daily function. At this point I am staying quarantined as our area people not only will not mask but will bully those that do. It's not worth the headache. I am not as active on Mayo Connect as I should be but do read it everyday. I will continue to monitor the different vaccine companies for more relevant data but after years of being a guinea pig as a military dependent I am going to wait and see. If this changes I will share info. I have 2 adult children that has received the vaccine. I know the daughter that has Hashimoto had more side affects than the daughter that has no autoimmune disorders.
Devonsnana

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Not really understanding your whole situation I have only this to offer: I have had chronic Lyme for almost 30 years. 2.I have had Hashimoto's Thyroiditis for at least 32 years. 3. I have CKD stage 3. I was in bed at home with Covid in April for approximately 5 days. To be certain that I had Covid and not a Lyme relapse (my symptoms being similar) I had my antibodies checked. I don't know if I I suffered virus after effects. It may have made the CKD worse but I am unsure. I am glad I did not take a chance on the vaccine which as you can learn from the daily newscasts is not protecting people very well and is surely doing harm to many. The suggestion that each variant may require booster shots further convinces me that the preventive value of the vaccine has been way over estimated.

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The Morderna has the worse side effects. I was the the hospital with Covid and was healing. I took Morderna shots 3 moths after and with both got deathly sick. Now I have small fiber neuropathy from head to toe. My Dr. feels it was from the shots. I’m not against the vaccines I’m just telling you my experience. I pray no side effects for you.

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