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MaryO/COVID Vaccine 1

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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/

Brenda B (BeBop), PCOS Bio

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I recently read an article in the NY Times magazine about Cushings, and a light bulb went off. I have an appt with an endocrinologist in March, but I’ve been to a renowned large clinic near my home in the early 1990s and was diagnosed with PCOS yet had no cysts on ovaries. I had abdominal striae, rapid wt gain in belly only, facial hair. They also found I had hypertriglyceridema – 1000+ when fasting. They could not put me on estrogen for the PCOS because of the lipid disorder, which they figured was genetic tho I never had any tests to find out why. So I went on Lopid, went on to grad school, shaved and plucked, wondered when the period would come.

I’m 53 now, got married in the mid 90s and we tried for years to have children, finally got pregnant in late 1998 and had a son in 99. Then I got hit with a terrible insomnia, sweating and anxiety and was treated for post partum depression. I did not feel depressed, just could not sleep despite my 9.9 baby sleeping through the night almost immediately. Didn’t sleep the two nights I was in the hospital after delivery. I stopped breastfeeding at 3 weeks and began a tragi-comedy of errors of regular health/mental health treatment, finally Zoloft did the trick as well as Valerian root instead of Ambien (which never worked for me) for sleep. The toughest point was when I hadn’t slept at all for 3 days. But that is another story. Anyway to make this already bad story worse, at 4 months postpartum, my mom died of stage 4 leiomyosarcoma, which she’d had in 1995 in her leg and it had metasticized to her lungs. She was a tough old bird and I think maybe had Cushings come to think back. (And thinking of my family history there may be something there with genetics, ie., MEN, with a sister with uterine fibroids, and two brothers with neurofibroma on their foreheads that were removed). Anyway, she refused all medical treatment after the leg surgery and elected to only have radiation in the leg area and never went to get checked out after that.

My son is now 14 and I’m apparently in menopause. I’ve had the return of the awful insomnia and the rapid heart rate at night. So I’m  back on Zoloft and valerian root immediately and made this endo appt today after reading about cushings here for two weeks.  My other conditions are hypertriglyceridemia (never determined if primary or secondary) for which I take Lovaza and Niacin and it’s down to about 300-400, which is not good. I tried Pravastatin but makes my muscle aches and constantnback aches worse.

In 2005 I had a terrible loose cough that the renowned clinic diagnosed as GERD after being misdiagnosed as asthma for 2 years by the community clinic. I can’t tolerate steroids as they make me an angry insomniac but took them as prescribed when they thought it was asthma. The big clinic diagnosed that as GERD (aciphex immediately worked on the cough) and I was also found to have NAFL (fatty liver), an enlarged spleen, and stil the high triglycerides.

In 2011 I had an uterine polyp (removed) and endometrial hyperplasia for which I get checked every year because I don’t want to/can’t take the progesterone. I would really prefer a hysterectomy to end that but obgyn is reluctant.

This year I’ve had a number of new symptoms: lactose intolerance, all over tendinitis (phy ther prescribed), incontinence and needing to go alot, leg and feet cramps, horrible back aches (member at the massage place), super fatique and muscle weakness (couldn’t even snap down the buckle on my ski boots last weekend and only lasted a couple of hours on the hill, and I love to ski) and blurred vision, eipscleris and early cataracts. I also have suffered from what is diagnosed as vasomotor rhinitis for YEARS, I keep lotion tissue companies in business. It’s been so bad this winter that I went to the doctor this week and was prescribed a steroid. Then I didn’t sleep last night. Oh and if I drink alcohol I get the same rapid heart beat and insomnia too, to add insult to injury. I still have the facial hair despite oh maybe a dozen laser treatments.

Oh, and since my 20s when this all started I’ve always considered myself “round shouldered” which looks to be a buffalo hump. :0

In reading all these stories I am worried that I’ve had Cushings my *entire* life not unlike some other folks here. I don’t trust doctors all that much becuase I had so a horrible time with “postpartum depression” treatrment. I was so angry after that that I spent several years on the board of a women’s reproductive mental health organization fighting to get the Melanie Stokes Act passed. I am too old and tired to do advocacy again but thanks for doing it and being here. I am reading about all you folk fighting for a diagnosis and I fear that I’ll be in the same boat. God bless you and hugs for all. Hang in there. I have. Sometimes barely.

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