Tag: Mycophenolic Acid

The BioGeek does Covid

It’s been a while since I’ve posted. I know, I know… lazy, lazy, lazy. This time I have a really good excuse.

I caught Covid!

I think that almost everyone who follows my blog knows that I have a type of scleroderma called systemic sclerosis; this is a progressive autoimmune disease that involves damage to blood vessels, lots of inflammation, and then scarring (fibrosis) of organs. In my case, the worst damage is occurring in my GI tract, my heart and my lungs. Because of the lung complications that I have developed I’m pretty high risk for a severe case of Covid-19, so my doctors have encouraged me (strongly) to get updated Covid-19 vaccines as soon as they are available. Because of my interstitial lung disease, I don’t halt my immunosuppressive drug for these boosters anymore.

So, as soon as the new Covid boosters were available I made an appointment, and on October 12th I got my shot. Yay! I was so excited to get it as I usually feel great for a few weeks after the vaccine. Like… my systemic sclerosis symptoms improve, I get more energy, things stop hurting, I can breathe better… you know, better! I know, I know, this doesn’t make any sense, but it is a well observed phenomenon in the systemic sclerosis community. It’s like there is some crazy connection between that vaccine and our autoimmune condition. It does not happen with any other vaccines.

Vaccines always knock me on my butt at first, though, so I wasn’t surprised that I developed muscle/joint pain, chills, fever and fatigue. I headed to bed expecting to feel better in the morning. Nope. I began coughing, got a sore throat, developed a lot of congestion, and GI symptoms arrived. Three days later I began to suspect that maybe this was actually Covid, and that I had unluckily gotten ill on the same day as the booster. I took an at-home Covid test, which was negative.

I wasn’t too sick to order more yarn on the internet. Look at this amazing sock kit that I bought from Moonglow!

A little aside: I’m pretty sure you don’t already know that Covid-19 and systemic sclerosis share a lot of similarities. Like, a lot. Damage to the vascular system, the production of a lot of inflammatory cytokines (messenger molecules that travel between cells), and then all those symptoms that can include heart and lung complications that result in fibrosis to both organs. (Covid is a fast-moving firestorm, and systemic sclerosis is more like the relentless slow burn version.) The pneumonia that develops in Covid-19 patients looks so much like the inflammatory lung disease in systemic sclerosis (SSc-ILD), it can be hard to sort out which disease is in play when systemic sclerosis patients like me first arrive in the ER. Okay, things never go well in the ER anyway, so I tend to avoid them. Zebra, right? I decided that I was just in a bad flare and suffered on instead of going to the ER.

Two days later, I retested for Covid. Still negative. Still too sick to consider driving anywhere, too sick to sit up and knit, but not sick enough to call 911. I was kind of stuck in limbo. Maybe some level of hell. Covid hell. Anyway, that booster shot had definitely failed me this time!! I spent my days coughing, sleeping and sadly gazing at my new sock yarn propped up on my bookshelf. I kept taking my immunosuppressive drugs and suffered on.

The cats began to live on the bed with me. Good kitties!

After a week of this nonsense, I had improved enough to consider going to a Kaiser Urgent Care to see if they could sort me out. Oh. The doctor there was of the opinion that I had Covid after all, but now it was too late for anti-virals or an infusion of antibodies. I got a chest x-ray, some nice antibiotics, a new drug for my cough, and headed back home to the cats and my unknitted yarn.

Tonight, 16 days later, I’m better. I can sit up and knit at last. Through all of this my oxygen levels never dropped, and while I was sick, I didn’t develop any really serious complications.

So, what have I learned about systemic sclerosis, the drug that I take to control it, and Covid-19? I mean, this is a total BioGeek moment! My mind full of dancing antibodies, failed Covid tests, and mycophenolate pills, I took to the internet for answers. There are some take home lessons that I’ve decided are so interesting that I’m passing them on.

  1. The similarities between systemic sclerosis and Covid-19 are so significant that the two diseases provide understandings that can help in the treatment of both.
  2. The immunosuppressive drug that I take (mycophenolate) to control my immune system’s attack on my lungs can prevent me from producing an antibody response to the vaccine. Okay, I knew that, but I was too sick to think through the implications… because that means…
  3. Immunosuppressive drugs can lead to false negative at-home Covid tests. Those tests are for Covid-19 antibodies; if you can’t make antibodies, then you may have Covid but test negative. Oops. (Correction! My cousin has set me straight… the home tests are detecting viral proteins (antigens), so that theory is blown out of the water! Double oops! The doctor told me the mycophenolate was the cause of the false positive tests, and he was pretty emphatic that I should stay on it. Now I’m wondering if the false positive tests were because mycophenolate has anti-viral properties, as some sources cited in the Lancet paper below have reported.) (Don’t you just love science?!!! )
  4. The same immunosuppressive drug (mycophenolate) can be an effective treatment for Covid patients reducing their risk of severe outcomes.
  5. Staying on the drug was a good decision on my part. I got lucky! Because I am on this drug, however, it can take longer for Covid to clear my system. It has been 16 days, and it looks like I need to isolate for a few more days.
  6. I never, ever thought that the treatment for my SSc-ILD would help protect me from the severe Covid complications that the same condition places me at high risk for. I’m so grateful that we didn’t go the chemotherapy route last year.

Isn’t all that interesting?

Here’s the links to articles if anyone is interested.

The Saturday Update: Weeks 19 and 20

The last two weeks have been busy, but not all that productive in the crafting/gardening/reading departments. I’m still busy going to appointments, doing my physical therapy (hey, I have graduated from the walker!!), and putting my yard and gardens back into order. Somewhere during the last two weeks the CDC here in the US changed their recommendations on mask wearing and then my state also lifted the mask mandate in most situations. Evidently we are now going to rely on the honor system to protect people at risk from other people who are unvaccinated and unmasked. Oh, dear. I have been pulling weeds and considering my options…

Late one afternoon I hurried and pruned my roses in the rain so I could get frost cloths over them to protect the new shoots from an overnight hard freeze. The resident bunny, all alone since the Great Horned owl caught his mate, joined me in the rain as I worked. It’s been that kind of week.

So here is my dilemma: what is a seriously compromised individual on immunosuppressant therapy to do? I hit the internet, of course.

As luck would have it, Science Magazine (the journal of the American Association for the Advancement of Science) recently published an article reporting out on the current data from several studies on this very issue. As it turns out, there are some immunosuppressant drugs that are seriously impacting the efficacy of the Covid-19 vaccines, and one of those drugs, mycophenolate, is of particular concern. Rats!! I’m taking that drug to control my scleroderma. I stopped reading the article when I got to the part about only 9% of patients on mycophenolate produced antibodies to the Pfizer or Moderna vaccines. Gosh darn it, I was vaccinated with the Pfizer vaccine. I wrote an email to my doctor and requested an antibody test to see if I was producing anti-Covid-19 antibodies. Late that afternoon I got a note from her nurse letting me know that I could just make the appointment online and go get the test on my own. I immediately did that and scored an appointment across town at a clinic that I could just make that evening if I jumped into the car and drove really, really fast…

So I drove across the Denver Metro area like a bat out of hell with the prevailing traffic flow and arrived at the clinic with 10 minutes to spare. Yay! Um… why is the parking lot so empty?

The clinic closed 20 minutes before the appointment; there was a goof in the scheduling system. I called my health provider from the parking lot and made sure my test request would transfer to another clinic and/or time and then sadly drove off. I bought myself chocolate on the way home. Why is everything so hard?

Thank heavens there is Hannah to balance out the little bumps in life. 🙂

The next day I got the test done after another drive across town and also heard back from my doctor. She recommended that I return to strict isolation because 1) the mask mandates had been lifted and 2) there was a strong chance that I wasn’t protected from Covid-19 no matter what the antibody test result was. Later in the day an email arrived carrying a letter from the Scleroderma Foundation that advised that I and other patients in my situation continue to wear masks and practice common sense safety measures including limiting contacts. Darn. When will this ever end? I’m starting to feel a little picked on here…

The next morning the antibody test result arrived: I have antibodies!!! Yay! About time I was cut a break, don’t you think? I’ll still be wearing a mask and will be really careful, but I think that I am safe to continue to go to appointments and the occasional book store or yarn shop.

Do you see why I’m not getting a lot of stuff done? All of this driving and decision making is just exhausting.

Knitting

The great thing about physical therapy is that you get better. You get to take afternoon breaks with hot packs on your sore muscles. The bad part about physical therapy is that, for some reason, the inflammation associated with building up muscles and loosening my bad boy tendons (I’m finally rehabilitating from a ruptured tendon in my hip) makes my joints misbehave. My hands especially have decided that they want to be babied and they definitely don’t want to knit. Still, I have made a little progress over the last two weeks:

My Noncho (Casapinka) is finally starting to take shape. The simple stockinette knitting in the round is easy on my hands and I can’t wait to get it done so I can wear it in cool offices during appointments. My socks, which are a take on assigned pooling knitting, are more adventurous with the texture stitches and the purl sections not to mention turning that heel and picking up stitches. Still, I am getting somehere with them. I’m inventing the socks as I go and will take time to explain what I did then they are done, but right now I’m just enjoying the fun of an adventurous bit of knitting fun. Don’t those socks make you happy just looking at them?!

Garden

The weather has totally been messing with us the last two weeks. It has rained… at lot. We have had snow followed by really warm sunny days. The the windy days arrived late this week to knock the new plants around under cloudy skies that threatened severe thunderstorms and tornadoes.

Ugh! I am getting lots of weeds pulled, new bedding plants planted, and sections of the lawn reseeded. Really, I have been working, but all I really have to show for my time is…

Hannah and her hydrangea plant that I pulled inside for a couple of days (hard freeze warning). Hannah thought that the plant was for her and was really involved with it for the couple days that she had it. Sorry Hannah. Hydrangeas need to live outside.

Books

I just started this book. Anyone have any feedback on whether I should keep going?

I was really excited about rejoining my book club next week for their meeting about Wanderers. Nope. Guess that isn’t happening as they are meeting at an indoors restaurant and the Covid-19 restrictions are now lifted so dining capacity is back up to 100%. This is a big, heavy book. It hurts my hands to hold it. If it doesn’t get really compelling really quickly it is going back to the library.

Anyone have a book recommendation?

Have a great week everyone.

Read a little, knit a little, and garden like your heart can’t live without it.