Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sjogren's syndrome

The Eyes Have It

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Scleroderma is complex enough on its own, but Sjogren’s Syndrome, which can accompany scleroderma, adds yet another layer of complexity. Sjogren’s is also an autoimmune disease, which typically presents with dry eyes and dry mouth but can cause other internal organ issues. I’ve lived with this for decades alongside scleroderma, and I take medication that manages the dry mouth component. But the dry eyes piece is a whole other challenge.

So I was really thrilled to discover a new (here in the U.S., at least) eye-drop that my dry eye specialist recommended. EvoTears® (Augentropfen) is unlike any eye-drop I’ve used previously. You can barely feel the drops when you use them (which makes it a bit tricky to know if you’ve actually succeeded in getting them in your eyes). As my optometrist explained, they strengthen the oil layer of natural tear film to keep the watery part of tears from evaporating. Given that my eyes barely make tears anymore, I was hopeful.

And the drops work. Brilliantly. The first day I tried them, I actually forgot about my eyes for the whole day, a first in a very long time as my eyes have gotten drier. (As in, even if I need to cry, I rarely can—especially uncomfortable when slicing onions.) I was able to read for several hours without discomfort, to work at my computer without discomfort, even take a walk on a windy day without discomfort.

Over the weekend, I experimented with using them before inserting my scleral lenses, and they seem to keep the area of my eyes beyond the lenses moisturized and more comfortable, a big plus.

However, there is a catch.

EvoTears are only available by prescription in the U.S. A one month supply with my Medicare insurance costs about $180. Meanwhile, in Europe (they are made in Germany), they are sold over the counter and cost about one-tenth of that co-pay.

My optometrist advised me to look on EBay, and sure enough, I found a supplier in Greece. The cost, including shipping, was about $60. My drops arrived within a month of my order (much sooner than the 2-3 month estimate), wrapped in white plastic tape printed with large red Greek letters (no idea what they meant) and a form that stated the shipment had passed U.S. Customs (thank goodness). I had to sign for them.

And so, on our next trip abroad, I will be on the lookout for EvoTears. Meanwhile, I’ll be ordering more from Greece. And maybe at some point in the not-too-distant future, the U.S. healthcare complex will find a way to make these as affordable here as they are abroad.

Not holding my breath.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: Ed Leszczynski

Spring at Last

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On Sunday, I walked outside without a coat for the first time this year. What a blessing, especially after feeling so cooped up 10 days ago with Covid. It’s been spring on the calendar for more than a month, but this was the first day that really felt springy.

As far as I can tell, I’m done with the virus. Whatever lingering sinus congestion (mild) is now attributable to allergies (the downside of spring). When I went for a routine pulmonary function test on Friday, at first the respiratory tech was not sure if she could administer it to me, given my recent Covid experience. But fortunately she was able to check with the hospital’s chief of infectious diseases, who agreed with my expectation that, given revised CDC protocols, I was free and clear.

(In case you’re not aware, the new guidance basically says that after 24 hours free of fever without OTC meds and no symptoms, you can go out masked. After five days of masking, you no longer need the mask, which is where I was on Friday, eight days from no symptoms, thanks to Paxlovid.)

I completed the test, which is never easy at this point, but the good news was that my diffusion rate (not stellar) had not really changed—which has been the case for several years now. So that was encouraging.

And a relief after my other health debacle last week—skillfully scratching my cornea in my right eye on Thursday when I was putting in my scleral lenses. I wasn’t sure, at first, why my eye was bothering me with the lens in place, because it bathes my eye in saline. But once I removed it, my eye continued to smart, and going outside in bright sunshine was truly uncomfortable.

Don’t try driving with a scratched cornea. I did okay, but my eye was tearing and I could barely keep it open. Bad idea. Very bad idea. Back home, after flushing my eye with drops, I used some eye gel and covered my eye with gauze and paper tape for several hours, which made it tolerable.

Fortunately, on Friday, before the PFT, I saw a specialist at the local college eye clinic, who assessed it and thought I was on the mend, though he was prepared to do an emergency debridement if need be. Thank goodness that wasn’t necessary. And I was fine by the weekend.

So, all the more reason to be glad to walk outside without a coat or a jacket or even a sweater on Sunday. No more Covid. No more eye pain. Just sun and flowers and blooming buds on our new cherry tree. A good way to begin a new week.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Routine Exam

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Monday afternoon found me in my hometown rheumatologist’s office. I see her twice a year, so that I always have a specialist nearby who knows my history, in case I need help pronto without driving into Boston. She is chair of the rheumatology department for our local health care organization, very thoughtful, compassionate. She also respects my long experience with scleroderma. Mostly, she listens.

We went over the usual check-list: Blood pressure looks good. How are your hands doing? Any prescriptions need refilling? Has anything changed? I reminded her that I needed her to schedule pulmonary function tests at the hospital, because my Boston Medical pulmonologist needs them when I see him in May. She sent in the order.

When she asked about my breathing, I told her I’d had an echocardiogram at Boston Medical a couple of weeks ago. She looked in MyChart. Although my exams from both local and Boston docs are visible in the online medical record, she could not access the Boston test results, something to do with HIPPA regulations.

Fortunately, I was able to get into my BMC account on my phone and pull up the information for her to review (one of those times when an internet search came in very handy). All normal, pulmonary pressures stable. I asked her about medical terms in the report: What is mild tricuspid regurgitation? Nothing to worry about, everyone has some, the echo is very sensitive. Nice to get that explanation in real time.

I filled her in on the mammogram kerfuffle. I asked her if the fact that I have some calcification in small vessels in my left breast is any indicator that more calcinosis in breast tissue could occur. She shook her head. Never seen that in 30 years of practice. I’ll take it.

I shared the good news that after several months of calcium pits emerging from my right thumb, the fifth shard finally emerged on Sunday, and it seems to be done, for now. (When I pulled the last pit out that evening, I showed Al: Look, it’s just a hole! And the hole, per usual, is finally closing on its own.) That must feel a lot better, she said. Yes, definitely.

I told her about my struggle with dry eyes from Sjogren’s and the great help I’m getting from my optometrist at the local college dry eye clinic. When I saw him last week to report back on new eye drops he’d given me (successful) and have him replace the dots on my scleral lenses that indicate how to orient them in each eye, he reminded me that I need to start allergy drops again, that it’s going to be a bad allergy season this year—the likely reason my eyes keep getting goopy.

We discussed the trade-offs of an infusion for osteoporosis (which I have had for years, like my mom and her mother). Despite not having infusions for over a decade, my bone density remains stable. My original rheumatologist, the one who saw me when all my symptoms erupted, had felt the infusions weren’t really necessary if bone density hadn’t changed.

At issue is whether those infusions can exacerbate bone resorption in my teeth. The unanswered/unaswerable question is whether the risk of losing more teeth and getting very expensive implants in a difficult procedure is worse than the risk of bone fracture if I fall. She said she would defer to my dentist. So I need to follow up with him. (And check the latest research about the effectiveness of bisphosphonates in reducing bone fractures. The answer is—it depends. Here’s info from NIH.)

And that was how we left it. It’s a lot to keep track of, but after all these years, it really does feel routine. Thank goodness, I’m holding steady.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: Mathew Schwartz

Dry Spell

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Dealing with dry eyes in a Northeast winter is always a challenge. Even as ours has been milder, so far (knock on wood—or not, given that the planet is warming) there’s just no escape from dry heat indoors, regardless of source. Some solve this with a humidifier, but I’ve found them difficult to keep mold-free.

My solution for my Sjogren’s for the past year-and-half, in additions to Restasis® eye drops, has been scleral contact lenses. I’m very fortunate to live a ten-minute drive from a college that specializes in health sciences, including optometry, with an excellent dry eye clinic. Dr. S, who teaches the optometry students, is a fountain of creative solutions for my eye problems and has been my guide and cheerleader as I’ve learned how to wear the lenses.

So, when I showed up for my annual check-up last week, he and the third-year student who attended me were concerned that I’m once again struggling with my dry eyes, despite the scleral contacts. The issue this time is not allergies, as it was last spring, easily solved with antihistamine eye drops. Even with the lenses inserted, the part of my eye not covered by the lenses dries out too quickly, due to the dry air at home. I need to use saline drops frequently to keep them moistened, so I’ve taken to only wearing them a couple of times a week, when I am sure I can use the drops often. But when I go for a couple of days without wearing them, my eyes get gunked up and my vision, bleary. Not fun.

Dr. S listened carefully, and then came up with another brainstorm. He had samples of a new nasal spray that is designed to treat dry eyes, called Tyrvaya®. You read that right. A nasal spray for dry eyes. There’s a trick to spraying it—you have to aim it inside your nostril toward your ear. And definitely don’t inhale, because it really stings. But miraculously, after trying this for several days, I find that my eyes are producing more tears—enough, in fact, that I can go much longer wearing my contacts without the saline drops.

Fun fact, as part of this education: Even for those without dry eyes, we all blink less when staring at a computer screen. For me, this lack of blinking becomes a big issue, exacerbating my dryness. Dr. S had another ingenious solution: an app that reminds you to blink. So I’ve added the Blinks app to my iMac. Basically, it’s an image of an eye that pops up according to the schedule you set, and blinks, then disappears. I’ve just started experimenting with it, so I cannot yet assess, but I pass that along as an option.

I don’t yet know what Tyrvaya costs once the samples run out, and I’m betting it will involved more mishegas with insurance coverage. But so far, it seems well worth trying. Will keep you posted at a later date about my progress, Dear Reader. In the meantime, remember to blink!

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image:  Petri Heiskanen

Gotcha

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So, we were supposed to go on a 10-day vacation over the past week, at long last flying across borders to savor another culture. But Covid had other plans.

Three nights before we planned to leave, Al started coughing. Not your normal clear-the-throat cough, but a deeper, barking cough that woke me up a few times. Just to be on the safe side, the next morning I gave him a rapid test. The T line turned purple even before the C line emerged. Not good.

After I got over being upset (I was quite upset) I realized that we should just try to reschedule the trip. Which, by the end of the day, I had successfully done. I had purchased Covid travel insurance, and I am sending off a claim for the additional cost of the switched airline tickets this week. I don’t know if it will be honored, given that I didn’t actually cancel the flights, but it’s worth a shot.

Meanwhile, Al and I both had PCR tests. His came back positive the next day, and mine, negative. But by Friday, the day we were supposed to leave, I was starting to feel crummy. Two negative rapid tests were not much consolation. Sure enough, Saturday morning my rapid test was definitively positive.

This all happened despite our both being fully vaccinated and double boosted. As has been widely reported, the current dominant strain of Omicron, BA.5, is highly contagious and can evade some of the vaccines. We have no idea how Al picked it up. And even as we did our best to mask around each other and for Al to isolate, it didn’t matter. I still got it.

Fortunately, Paxlovid, the anti-viral medication for Covid that is provided at no charge by the federal government, is a game changer. It made a huge difference for both of us. There are reports of side-effects and also significant contraindications for certain medications. I had to stop two of my meds in order to take the five-day course. The only side effect that I was aware of was the bitter aftertaste it leaves in your mouth. But that is a very small price to pay for stopping Covid from replicating itself in my body.

Before Paxlovid, I was experiencing aches, chills, overactive Raynaud’s, a lot of congestion plus very runny nose, and a really sore throat (like severe strep, hard to swallow because it hurt so much). The day before I tested positive, I also experienced a sudden bout of vertigo, and until the Paxlovid took hold, migrating pins and needles, not unlike shingles. Oh, and my heart rate sped up and my arrhythmia kicked in. No fun.

Within 36 hours of starting the Paxlovid, all of this began to ease up. It felt miraculous. There is no doubt in my mind that if I hadn’t taken all the precautions of vaccines and boosters ahead of this, I would have been in much worse shape. And the Paxlovid really helped to turn things around. Risks of long Covid are real, especially when my immune system is already compromised from both scleroderma and Sjögren’s Syndrome. Even if I experience a Covid rebound (which can happen after stopping Paxlovid), I’m confident that another five days on Paxlovid is worth it, and quite manageable. So far, so good.

Happily, we are both on the mend. Fatigue is still a factor, but not as bad as previously. I tested negative with a rapid test eight days after my positive test. PCR results may remain positive for a while because they pick up fragments of the virus, even when you’re no longer really contagious.

In any case, I intend to wear my mask in public long after I need to (five days past the five-day isolation period) according to post-Covid protocol. Just to be careful. I do not want to get re-infected, especially in the weeks leading up to our rescheduled trip.

I hope you are well and free of all this. I am grateful for all the medical advances that enabled me and Al to get better relatively quickly and never get severely ill. Covid is not to be messed with. Stay safe.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: Gratisography