Tag: Mycophenolate Mofetil

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 Scleroderma Chronicles: World Scleroderma Day, 2021

Here we are again… World Scleroderma Day.

I’ve written about scleroderma on this date for several years now. I just went back and read what I wrote last year and decided that I did a pretty good job. I talked about getting diagnosed, the complications that are being caused by my disease, and what that means in my life. Here’s that post if you would like to check out my take on things last year.

This is one crazy-ass disease and it certainly has complicated my life. In the year since I wrote that last post I have hung in there (hey, staying home for a year on oxygen slowly improving was actually good for me) and then emerged from strict lockdown to get lots of testing to try to sort out what is the cause of my blue-lipped status and the source of other little issues that I have going on. While thinking about what to write today I thought of a few things that I haven’t written about before and some things that are new since the last post.

The correct name for the type of scleroderma that I have is limited systemic sclerosis. Systemic means that every part of my body is being impacted by this disease, and the word sclerosis means that scarring is happening in tissues all over my body. What’s happening to me is not obvious to the outside viewer, but it is insidious and ongoing all the same. Somehow, by some mechanism that isn’t clear, my systemic sclerosis is being driven by antibodies that I’m producing that react with the centromeres of my cells.

What’s a centromere? I’m shocked, shocked I tell you, that you just don’t know that! Seriously, the centromere is that little place in the middle of a chromosome that can be seen when cells are getting ready to divide. This is a little tricky because the only time we can see chromosomes is when cells are getting ready to divide and they have already copied themselves: the little pinched waist in the middle of the chromosome where they are connected is where the centromere is located.

Got that?

This image belongs to the NIH; as a taxpaying citizen I hope that it is okay for me to use it here. 🙂

Somehow something happened to a protein located in the centromere area of the chromosomes in my body that made it look “different” and my immune system responded by making antibodies against that protein. The antibodies that are produced are called “anti-centromere antibodies” and their presence is highly suggestive of my form of systemic sclerosis. The alternative explanation is that my immune system just went berserk, decided to attack my own cells, and began making these antibodies on its own. I personally think that something changed and then the antibodies were made as a response. My money is on a virus.

It really doesn’t matter all that much since, once the immune system is triggered, the immune response can’t be turned off and one day you are sat down in some rheumatologist’s office and carefully told about what is happening to you and what to expect in the future. Your skin will get thick. Your blood vessels will be so damaged that they will thicken and spasm shutting off blood flow to parts of your body unexpectedly. The scarring tissue will build up in your digestive tract and damage the smooth muscles that you need to move food along. Your kidneys will lose function. Your nerves will be damaged. Your lungs need to protected since they are especially vulnerable to damage from accidently inhaled stomach acid. If your disease flares badly enough you can develop autoimmune pneumonia. Your tendons, muscles, and joints are all in trouble. You are in trouble. The damage will progress and there is no cure.

“This is really serious,” one of those early doctors told me. “This is like a diagnosis of cancer, but of course, some cancers can be cured…”

Well, shoot. Good thing there are drugs to help control symptoms and to slow the progression of the disease by dialing down the immune system.

Yay for drugs!! I am on drugs to shut down my stomach acid production (my lungs are doing pretty well) and on drugs to crush my immune system into submission. I’m on anti-inflammatories to control other cellular pathways activated by those ill-behaved antibodies. I get steroid injections to help my damaged joints and inflamed tendons. I have strict dietary limitations. I do lots of physical therapy. I’m on oxygen overnight to keep my red blood cell count in a normal range. I dress in layers to help control the spasms of my circulatory system, a phenomenon called Raynaud’s. I knit almost every day to keep my fingers from stiffening up and contracting. I now have a shiny purple cane to help me walk.

Every day is a challenge, but I am fine.

So what is new this year?

Scleroderma has damaged my heart. They are still testing to clarify exactly what is going on, but so far they have established that there is scarring in the heart muscle that is making my heart “stiff” and that somehow I developed a hole in my heart. There are suggestions of pulmonary hypertension, but I need more testing for a definitive diagnosis. No wonder I turn blue in the face and pant when I walk.

Oh, yeah, there is also a pandemic going on.

One of the greatest ironies of the last year is that serious cases of Covid-19 share similarities with the clinical symptoms of scleroderma crisis. Immune system-mediated pneumonia caused by an overreacting immune system is a hallmark of both conditions. Then there is this… Remember those drugs that I take to crush my immune system into submission? I take two drugs for that purpose. One of them, hydroxychloroquine, was (irresponsibly) politicized by influential individuals early in the pandemic and therefore became short in supply; my muscles and joints immediately rebelled when my supply lapsed early in the lockdown. The other drug that I take, mycophenolate mofetil, is linked to poor response to the Covid-19 vaccine. I am vaccinated and I am making anti-Covid antibodies, but since my total antibody count is very low my doctors aren’t sure I can fight off a Covid-19 infection fast enough to stay out of the hospital. I’m advised to continue to mask and isolate because… blue face, hole in heart, stuff like that…

For me, lockdown goes on.

So, here are the takeaway messages from this post. Be kind. There are illnesses that are really debilitating that you can’t see when you look at that person walking into a store from a handicapped parking spot. Don’t be dismissive of conditions with funny names that you’ve never heard of before. I know that it is hard to understand conditions that are beyond your experience and that you can’t really see, but take a moment to let someone tell you about their illness and the daily challenges that they embrace. If you meet a person with an autoimmune disease, they deserve a hug. If they have scleroderma you should give them two hugs! Be understanding of people who are still wearing a mask in public; perhaps they are braver than you can imagine.

Today is World Scleroderma Day.

Go Team Teal!!

Note: If you would like to know about different types of scleroderma you can learn about them here.