💙 Post-Op Pituitary COVID Injection 1

 

Quick takeaway: I have adrenal insufficiency (one adrenal was removed with my kidney due to cancer, steroid-dependent (post-Cushing’s Disease), growth hormone insufficiency, panhypopituitary.  I had some issues after my first COVID-19 injection (Moderna) but not too bad.  My second injection will be March 15.


January 12, 2021 my Mom’s doctor called and offered her the vaccine but she didn’t want it. She said she didn’t go anywhere.  True but my DH and I do – and she has a friend visit once a month.  I joked to a friend that I could put on a wig and go as her since we have the same first name.

I have been doing the COVID-19 Patient Monitoring System through my doctor’s office since it was first offered.  Just a few boxes of how I’m feeling, if I wore a mask and so on.  I am a strong believer in helping to participate in medical trials, as I mention below.  This one is very easy and takes about a minute out of my day.  Easy-peasy.

I’ve been on the Fairfax Waiting List since January 19, 2021.  As of right now, they are still scheduling people from January 18 – I read somewhere that 41,000-some people registered on the 18th, so it may be a while to get to my date.  They have set up an interesting dashboard to track how things are going  https://www.fairfaxcounty.gov/health/novel-coronavirus/vaccine/data

I got a link from a friend when CVS opened up clinics in my state – https://www.cvs.com/vaccine/intake/store/covid-screener/covid-qns

I kept the CVS link open and checked it every morning.  Everything was full until Saturday, February 13.  I was able to register at about 5 am.  When I went back about 20 minutes later, everything was gone.

 

CVS sent out an informative email with directions, dates, ics file to easily add to calendar,

On the day of your appointment:

•Please arrive early enough to check in before your scheduled appointment. Arriving late for your appointment may result in an extended wait time.

•Bring your ID and insurance card, voucher or other coverage

•Don’t forget a face covering—wearing it throughout your visit is required

•When you arrive, please check in at the pharmacy area inside the store or follow the signs for the COVID-19 vaccine

CVS tips for vaccine shots:

•Wearing short sleeves makes getting a shot easier and faster

•If you must wear long sleeves, dress in layers with the short sleeves underneath

Review the patient fact sheet about the specific vaccine you are receiving

What to do if you feel sick or have COVID-19 symptoms:

•Contact your health care provider immediately

•If your provider recommends it, get tested for COVID-19

Cancel your appointment

•Don’t come to the pharmacy

•Schedule a new appointment when you’re well

After your vaccine:

•Be prepared to stay for 15 to 30 minutes after the COVID-19 vaccination so you can be observed for side effects.

•If you experience side effects from your COVID-19 vaccine dose, you may find some guidance at Coronavirus: Vaccine, Prevention Tips & FAQs

•The CDC has created a way for you to report how you feel after the COVID-19 vaccination through a smartphone-based tool that uses text messaging and web surveys to check in with you. Learn about v-safe and sign up today.

And a short survey, which I took – just add up to 5 stars and write a short paragraph.

Monday, February 15, 2021: When I got to CVS, I found that everything was very well run.

I got a text from CVS asking me to click a link when I arrived at 3:30 and it gave me directions on where to go.

I was met by someone at door who checked my name – I showed him my phone screen – he showed me where to walk following arrows on floor.  Then I was met by so someone who checked my name and he asked if I had done the texting thing (yes!).

There were 4 people ahead of me that I could see.  It went very fast.  I was in the little room within less than 10 minutes.

The nurse asked if left arm was ok to use.

She told me to treat the little quarantine form like gold.  Take a picture on my phone, just in case.  Maybe laminate after second shot.  Keep it with passport.

She said that old folks (like me!) didn’t have as many issues after second shot.

The shot was very fast – I never felt it.

The nurse said if I get a headache, take Tylenol only.  I said that was all I could take anyway because I have only one kidney.

I sat in the waiting area for 15 minutes to be sure there were no problems  There were about 10 or so people sitting around the store that I could see at various stages of their 15 minutes.

I was glad to see that it was Moderna (MRNA) although I would have taken either.  I have a long-standing issue with the other drug company, unrelated to COVID vaccines.

I posted on FB that I had done my first injection and a friend told me about registering at vsafe.cdc.gov for them to keep track of me after the vaccination.  I signed up for that right away – and I noticed that CVS had also given me that link.

About 12 hours later (3:30 am) I got up to go to the bathroom and noticed that my arm was a little sore. No biggie.

Tuesday, February 16, 2021:  I just got my first dose of Moderna yesterday – sore arm, so far.

The nurse told me yesterday that older people like myself (I’m 72) had fewer side effects since we had been exposed to more things over the years.  I’m not sure how accurate that is but I’ll hold on to that hope until I get my second dose on March 15!

Wednesday, February 17, 2021:  I had weird dreams overnight but I got up about 4:00 am.  I did some work and fell back asleep until 10:15.

We didn’t go to water exercise. I decided at the very last minute, walking out the door. Reaction to Monday shot?  I had a little headache, dizzy, congested, very tired.  I should have taken more cortisone at this time but didn’t remember until 8:30 pm.

I slept more until about 2 pm and had very weird dreams – I don’t know if the dreams are part of it or not but I reported them to the safe.cdc.gov questionnaire.

I cancelled piano lessons for the day.  I wrote to my students:

I am so sorry but I need to cancel today’s lesson.  I had the first COVID vaccination on Monday afternoon.  I was feeling fine yesterday so I assumed that I wasn’t going to have any side effects but they caught up with me today.  It’s just a headache , a bit of congestion and fatigue (I’ve been sleeping all day so far) but I don’t think I would be at my best during XXX’s lesson.

See you next week…

After cancelling lessons, I went back to sleep until time for Pender’s 7 pm Ash Wednesday service.  I was felling cold but I don’t know if it was chills or really a cold.  I started coughing a little.

At night, I remembered I should have up-dosed. I told my DH that night if he ever noticed me like this again, it was the perfect time to tell me to stress dose.  It never occurred to me during the day.

At that point, I realized I hadn’t eaten all day.  I had dinner (I was surprised that I could eat it) at 9:25 and did my growth hormone injection.

I went to bed at 11 p.

Thursday, February 18, 2021: I’m a little more tired than usual but ok.  I spent time napping and working alternated through the day.

Friday, February 19, 2021: Just the normal tiredness.  Hooray!


Info below from https://medshadow.org/covid19-vaccine-side-effects/  I’ve had the bold ones so far after the first injection.

Moderna

Moderna started Phase III clinical trials for its vaccine candidate in July. In earlier trials, nearly half of patients experienced common adverse effects like injection site pain, rash, headaches, muscle soreness, nausea and fevers after the second injection. These effects generally subsided within two days. CNBC spoke to a few individuals, some participating in Moderna’s trial and some in Pfizer’s trial who said much the same thing: the side effects were intense and included a high fever, body aches, bad headaches and exhaustion, but were worth it for protection from Covid-19.

In the FDA report published in December, the most common side effects were pain at injection site (91.6% of patients), fatigue (68.5%), headache (63.0%), muscle pain (59.6%), joint pain (44.8%), and chills (43.4%). Three patients experienced Bell’s Palsy, a sudden, and usually temporary, weakening or paralysis of the facial muscles.

A few patients with facial fillers experienced swelling after receiving the vaccine. They were treated with antihistamines and steroids. In California, officials halted the use of one particular batch of Moderna vaccines (lot 41L20A) after a small cluster (fewer than 10) of patients at one particular site experienced allergic reactions that required medical attention.

Out of the first 7.5 million doses administered from Dec 14- Jan 18, 19 cases of anaphylaxis were reported to VAERS after the Moderna vaccine. No patients have died from anaphylaxis. Patients are now being monitored for 15-30 minutes after receiving the vaccine to watch for signs of anaphylaxis.

Many patients are reporting injection site reactions that show up shortly after the injection or up to a week later. These reactions — which are characterized by swelling, redness, itching, rashes, heat and pain — are expected to last a day to a week. Physicians emphasize that while these effects can be scary, they are not dangerous and should not prevent someone from getting the second shot. So far, doctors do not report seeing these reactions after the second shot, however so few have been given so far that scientists are not sure how common it will be on round two.

The CDC reports that 11% of patients experienced swollen lymph nodes after the first shot. That raised to 16% after the second shot.

A study posted on Feb 1 showed that patients who received the vaccine after having been previously infected with COVID-19 showed greater immune response to the first shot and more intense side effects that are associated with strong immune responses like fever and muscle aches. The study included patients who received either the Moderna or Pfizer vaccine. Some scientists believe these patients may only need a single shot to provide sufficient immunity, but more research is needed.

Moderna has announced that it will begin testing its vaccine in children and adolescents, who they believe may have stronger immune responses, leading to more intense side effects.

This page has information about the other brands of vaccine: https://fairfaxcountyemergency.wpcomstaging.com/2021/02/16/what-you-need-to-know-when-you-get-vaccinated-and-after-you-get-vaccinated/

⁉️ Cushing’s Myths and Facts:: “Each Person Requires the Same Dose of Steroid in Order to Survive…”

Myth: “Each person requires the same dose of steroid in order to survive with Secondary or Primary Adrenal Insufficiency”

myth-busted

Fact: In simple terms, Adrenal Insufficiency occurs when the body does not have enough cortisol in it. You see, cortisol is life sustaining and we actually do need cortisol to survive. You have probably seen the commercials about “getting rid of extra belly fat” by lowering your cortisol. These advertisements make it hard for people to actually understand the importance of the function of cortisol.

After a Cushing’s patient has surgery, he/she goes from having very high levels of cortisol to no cortisol at all. For pituitary patients, the pituitary, in theory, should start working eventually again and cause the adrenal glands to produce enough cortisol. However, in many cases; the pituitary gland does not resume normal functioning and leaves a person adrenally insufficient. The first year after pit surgery is spent trying to get that hormone to regulate on its own normally again. For a patient who has had a Bilateral Adrenalectomy (BLA), where both adrenal glands are removed as a last resort to “cure” Cushing’s; his/her body will not produce cortisol at all for his/her life. This causes Primary Adrenal Insufficiency.

All Cushing’s patients spend time after surgery adjusting medications and weaning slowly from steroid (cortisol) to get the body to a maintenance dose, which is the dose that a “normal” body produces. This process can be a very long one. Once on maintenance, a patient’s job is not over. He/She has to learn what situations require even more cortisol. You see, cortisol is the stress hormone and also known as the Fight or Flight hormone. Its function is to help a person respond effectively to stress and cortisol helps the body compensate for both physical and emotional stress. So, when faced with a stressor, the body will produce 10X the baseline levels in order to compensate. When a person can not produce adequate amounts of cortisol to compensate, we call that Adrenal Insufficiency. If it gets to the point of an “Adrenal Crisis”, this means that the body can no longer deal and will go into shock unless introduced to extremely high levels of cortisol, usually administered through an emergency shot of steroid.

There are ways to help prevent a crisis, by taking more steroid than the maintenance dose during times of stress. This can be anything from going to a family function (good stress counts too) to fighting an infection or illness. Acute stressors such as getting into a car accident or sometimes even having a really bad fight require more cortisol as well.

It was once believed that everyone responded to every stressor in the exact same way. So, there are general guidelines about how much more cortisol to introduce to the body during certain stressors. For instance, during infection, a patient should take 2-3X the maintenance dose of steroid (cortisol). Also, even the maintenance dose was considered the same for everyone. Now a days, most doctors will say that 20 mg of Hydrocortisone (Steroid/Cortisol) is the appropriate maintenance dose for EVERYONE. Now, we know that neither is necessarily true. Although the required maintenance dose is about the same for everyone; some patients require less and some require more. I have friends who will go into an adrenal crisis if they take LESS than 30 mg of daily steroid. On the other hand, 30 mg may be way too much for some and those folks may even require LESS daily steroid, like 15 mg. Also, I want to stress (no pun intended) that different stressors affect different people differently. For some, for instance, an acute scare may not affect them. However, for others, receiving bad news or being in shock WILL put their bodies into crisis. That person must then figure out how much additional steroid is needed.

Each situation is different and each time may be different. Depending on the stressor, a person may need just a little more cortisol or a lot. Every person must, therefore, learn their own bodies when dealing with Adrenal Insufficiency. This is VERY important! I learned this the hard way. As a Clinical Psychologist; I assumed that my “coping skills” would be enough to prevent a stressor from putting me into crisis. That was FAR from the truth! I have learned that I can not necessarily prevent my body’s physiological response to stress. People often ask me, “BUT you are a psychologist! Shouldn’t you be able to deal with stress?!!!!” What they don’t realize is that my BODY is the one that has to do the job of compensating. Since my body can not produce cortisol at all, my job is to pay close attention to it so that I can take enough steroid to respond to any given situation. We all have to do that. We all have to learn our own bodies. This is vitally important and will save our lives!

To those we have lost in our community to Adrenal Insufficiency after treatment of Cushing’s, Rest in Peace my friends! Your legacies live on forever!

~ By Karen Ternier Thames

🎤Archived Interview: Jenn, Steroid Induced (Iatrogenic) Cushing’s patient

 

Jenn (StaceyJenn) was diagnosed with adrenal insufficiency, hypothyroidism, and a host of other ailments in 2001 (candidiasis, intestinal permeability, 22 latent food allergies). Once diagnosed, she was on specially formulated hydrocortisone for 7 years as she was allergic to the fillers in the meds. Her doctor stopped practicing and she was transferred to his associate. She switched StaceyJenn to medrol. After Cushing’s symptoms, a new endo started weaning her off the medrol…

Listen at http://www.blogtalkradio.com/cushingshelp/2008/04/03/interview-with-staceyjenn-steroid-induced-iatrogenic-cushings-patient

 

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⁉️ Myths and Facts about Cushing’s: “Each Person Requires the Same Dose of Steroid in Order to Survive…”

Myth: “Each person requires the same dose of steroid in order to survive with Secondary or Primary Adrenal Insufficiency”

myth-busted

Fact: In simple terms, Adrenal Insufficiency occurs when the body does not have enough cortisol in it. You see, cortisol is life sustaining and we actually do need cortisol to survive. You have probably seen the commercials about “getting rid of extra belly fat” by lowering your cortisol. These advertisements make it hard for people to actually understand the importance of the function of cortisol.

After a Cushing’s patient has surgery, he/she goes from having very high levels of cortisol to no cortisol at all. For pituitary patients, the pituitary, in theory, should start working eventually again and cause the adrenal glands to produce enough cortisol. However, in many cases; the pituitary gland does not resume normal functioning and leaves a person adrenally insufficient. The first year after pit surgery is spent trying to get that hormone to regulate on its own normally again. For a patient who has had a Bilateral Adrenalectomy (BLA), where both adrenal glands are removed as a last resort to “cure” Cushing’s; his/her body will not produce cortisol at all for his/her life. This causes Primary Adrenal Insufficiency.

All Cushing’s patients spend time after surgery adjusting medications and weaning slowly from steroid (cortisol) to get the body to a maintenance dose, which is the dose that a “normal” body produces. This process can be a very long one. Once on maintenance, a patient’s job is not over. He/She has to learn what situations require even more cortisol. You see, cortisol is the stress hormone and also known as the Fight or Flight hormone. Its function is to help a person respond effectively to stress and cortisol helps the body compensate for both physical and emotional stress. So, when faced with a stressor, the body will produce 10X the baseline levels in order to compensate. When a person can not produce adequate amounts of cortisol to compensate, we call that Adrenal Insufficiency. If it gets to the point of an “Adrenal Crisis”, this means that the body can no longer deal and will go into shock unless introduced to extremely high levels of cortisol, usually administered through an emergency shot of steroid.

There are ways to help prevent a crisis, by taking more steroid than the maintenance dose during times of stress. This can be anything from going to a family function (good stress counts too) to fighting an infection or illness. Acute stressors such as getting into a car accident or sometimes even having a really bad fight require more cortisol as well.

It was once believed that everyone responded to every stressor in the exact same way. So, there are general guidelines about how much more cortisol to introduce to the body during certain stressors. For instance, during infection, a patient should take 2-3X the maintenance dose of steroid (cortisol). Also, even the maintenance dose was considered the same for everyone. Now a days, most doctors will say that 20 mg of Hydrocortisone (Steroid/Cortisol) is the appropriate maintenance dose for EVERYONE. Now, we know that neither is necessarily true. Although the required maintenance dose is about the same for everyone; some patients require less and some require more. I have friends who will go into an adrenal crisis if they take LESS than 30 mg of daily steroid. On the other hand, 30 mg may be way too much for some and those folks may even require LESS daily steroid, like 15 mg. Also, I want to stress (no pun intended) that different stressors affect different people differently. For some, for instance, an acute scare may not affect them. However, for others, receiving bad news or being in shock WILL put their bodies into crisis. That person must then figure out how much additional steroid is needed.

Each situation is different and each time may be different. Depending on the stressor, a person may need just a little more cortisol or a lot. Every person must, therefore, learn their own bodies when dealing with Adrenal Insufficiency. This is VERY important! I learned this the hard way. As a Clinical Psychologist; I assumed that my “coping skills” would be enough to prevent a stressor from putting me into crisis. That was FAR from the truth! I have learned that I can not necessarily prevent my body’s physiological response to stress. People often ask me, “BUT you are a psychologist! Shouldn’t you be able to deal with stress?!!!!” What they don’t realize is that my BODY is the one that has to do the job of compensating. Since my body can not produce cortisol at all, my job is to pay close attention to it so that I can take enough steroid to respond to any given situation. We all have to do that. We all have to learn our own bodies. This is vitally important and will save our lives!

To those we have lost in our community to Adrenal Insufficiency after treatment of Cushing’s, Rest in Peace my friends! Your legacies live on forever!

~ By Karen Ternier Thames

🎤 Interview Archive: Jenn, Steroid Induced (Iatrogenic) Cushing’s patient

 

Jenn (StaceyJenn) was diagnosed with adrenal insufficiency, hypothyroidism, and a host of other ailments in 2001 (candidiasis, intestinal permeability, 22 latent food allergies). Once diagnosed, she was on specially formulated hydrocortisone for 7 years as she was allergic to the fillers in the meds. Her doctor stopped practicing and she was transferred to his associate. She switched StaceyJenn to medrol. After Cushing’s symptoms, a new endo started weaning her off the medrol…

Listen at http://www.blogtalkradio.com/cushingshelp/2008/04/03/interview-with-staceyjenn-steroid-induced-iatrogenic-cushings-patient

 

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Myth: “Each Person Requires the Same Dose of Steroid in Order to Survive…

Myth: “Each person requires the same dose of steroid in order to survive with Secondary or Primary Adrenal Insufficiency”

myth-busted

Fact: In simple terms, Adrenal Insufficiency occurs when the body does not have enough cortisol in it. You see, cortisol is life sustaining and we actually do need cortisol to survive. You have probably seen the commercials about “getting rid of extra belly fat” by lowering your cortisol. These advertisements make it hard for people to actually understand the importance of the function of cortisol.

After a Cushing’s patient has surgery, he/she goes from having very high levels of cortisol to no cortisol at all. For pituitary patients, the pituitary, in theory, should start working eventually again and cause the adrenal glands to produce enough cortisol. However, in many cases; the pituitary gland does not resume normal functioning and leaves a person adrenally insufficient. The first year after pit surgery is spent trying to get that hormone to regulate on its own normally again. For a patient who has had a Bilateral Adrenalectomy (BLA), where both adrenal glands are removed as a last resort to “cure” Cushing’s; his/her body will not produce cortisol at all for his/her life. This causes Primary Adrenal Insufficiency.

All Cushing’s patients spend time after surgery adjusting medications and weaning slowly from steroid (cortisol) to get the body to a maintenance dose, which is the dose that a “normal” body produces. This process can be a very long one. Once on maintenance, a patient’s job is not over. He/She has to learn what situations require even more cortisol. You see, cortisol is the stress hormone and also known as the Fight or Flight hormone. Its function is to help a person respond effectively to stress and cortisol helps the body compensate for both physical and emotional stress. So, when faced with a stressor, the body will produce 10X the baseline levels in order to compensate. When a person can not produce adequate amounts of cortisol to compensate, we call that Adrenal Insufficiency. If it gets to the point of an “Adrenal Crisis”, this means that the body can no longer deal and will go into shock unless introduced to extremely high levels of cortisol, usually administered through an emergency shot of steroid.

There are ways to help prevent a crisis, by taking more steroid than the maintenance dose during times of stress. This can be anything from going to a family function (good stress counts too) to fighting an infection or illness. Acute stressors such as getting into a car accident or sometimes even having a really bad fight require more cortisol as well.

It was once believed that everyone responded to every stressor in the exact same way. So, there are general guidelines about how much more cortisol to introduce to the body during certain stressors. For instance, during infection, a patient should take 2-3X the maintenance dose of steroid (cortisol). Also, even the maintenance dose was considered the same for everyone. Now a days, most doctors will say that 20 mg of Hydrocortisone (Steroid/Cortisol) is the appropriate maintenance dose for EVERYONE. Now, we know that neither is necessarily true. Although the required maintenance dose is about the same for everyone; some patients require less and some require more. I have friends who will go into an adrenal crisis if they take LESS than 30 mg of daily steroid. On the other hand, 30 mg may be way too much for some and those folks may even require LESS daily steroid, like 15 mg. Also, I want to stress (no pun intended) that different stressors affect different people differently. For some, for instance, an acute scare may not affect them. However, for others, receiving bad news or being in shock WILL put their bodies into crisis. That person must then figure out how much additional steroid is needed.

Each situation is different and each time may be different. Depending on the stressor, a person may need just a little more cortisol or a lot. Every person must, therefore, learn their own bodies when dealing with Adrenal Insufficiency. This is VERY important! I learned this the hard way. As a Clinical Psychologist; I assumed that my “coping skills” would be enough to prevent a stressor from putting me into crisis. That was FAR from the truth! I have learned that I can not necessarily prevent my body’s physiological response to stress. People often ask me, “BUT you are a psychologist! Shouldn’t you be able to deal with stress?!!!!” What they don’t realize is that my BODY is the one that has to do the job of compensating. Since my body can not produce cortisol at all, my job is to pay close attention to it so that I can take enough steroid to respond to any given situation. We all have to do that. We all have to learn our own bodies. This is vitally important and will save our lives!

To those we have lost in our community to Adrenal Insufficiency after treatment of Cushing’s, Rest in Peace my friends! Your legacies live on forever!

~ By Karen Ternier Thames

Interview with Jenn, Steroid Induced (Iatrogenic) Cushing’s patient

 

Jenn (StaceyJenn) was diagnosed with adrenal insufficiency, hypothyroidism, and a host of other ailments in 2001 (candidiasis, intestinal permeability, 22 latent food allergies). Once diagnosed, she was on specially formulated hydrocortisone for 7 years as she was allergic to the fillers in the meds. Her doctor stopped practicing and she was transferred to his associate. She switched StaceyJenn to medrol. After Cushing’s symptoms, a new endo started weaning her off the medrol…

Listen at http://www.blogtalkradio.com/cushingshelp/2008/04/03/interview-with-staceyjenn-steroid-induced-iatrogenic-cushings-patient

 

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

It is more than amount

Taking hydrocortisone – seems like a lifelong thing for so many of us! I’ve been taking it for over 20 years, every day.

Zebraontheside

I have been taking hydrocortisone for almost a year now and I have to do a 24 hour urine free cortisol. This is old hat *boom boom chick* for me. I went to the lab yesterday to pick up the jugs. Yes, you heard right – JUGS. Plural. I did these all of the time when I was testing for Cushing’s and after. I usually try to restrict how much I drink but I am really uncomfortable on tests that I get it all in 1 jug. I really need 2 and could easily have done 3 before. The technician was shocked when I asked for multiple jugs and told me that I could just bring it in something else because she really only needs to know the volume and can take the aliquot out of the one jug with acid in it.

*thoughts about the other times that I…

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