Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Mind

Adventures with Antibiotics

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Now that my blood pressure seems to be, thankfully, calming down, the next frontier is healing the infection in my left ring finger. As I’ve written recently, this has been going on for a couple of months, now. Two multi-week courses of Minocyline perhaps helped, but not enough to really clear the infection.

So, last Monday, I met with an infectious disease specialist to get some help. Finding a broad spectrum antibiotic for me is complicated, because I am allergic to a variety of treatments. This physician is a colleague of the ID doc I had switched to a couple of years ago, after my longtime specialist retired. The new doc was away, so I was scheduled to meet her. A good thing, as it turned out, because she is very empathetic and understood immediately what the problem was. She put me on a ten-day course of levoquin, which I had successfully used a couple of years ago for a severe digital ulcer infection.

Levoquin has a number of potential side effects. The most serious involve tendon inflammation and risk of tearing or rupture, especially the Achilles tendon. So far, thank goodness, that hasn’t happened. But, the evening I took the first dose, I discovered another side effect—insomnia. I simply could not fall asleep until after 4:30 a.m. While tossing and turning and looking up the drug’s impact on sleep (sure enough, I was not losing my mind), I also learned that you should not take ibuprofen with levoquin, because it can increase risk of seizures. I take ibuprofen daily to manage join pain.

So, the next morning, I wrote to my new ID specialist, told her what had happened, and asked about ibuprofen. While she was surprised about my sleep disruption (I always have rare side effects), she double checked and concurred that I should stop the ibuprofen while on this antibiotic and switch to acetaminophen to manage pain. Now, acetaminophen is fine for pain relief, but it does not treat inflammations.

This became readily apparent that night. I began to experience nerve pain in my infected ring finger and the middle finger next to it, which apparently had picked up some of the infection. Again, I struggled to sleep, and I could barely concentrate the next day. Finally, I gave up, contacted my geriatrics team which serves as my PCP, and my NP gave me a scrip for gabapentin to control the nerve pain.

I have not had to take this drug since 2017, when my hands fell apart and I needed hand surgery. It is strong. It makes me loopy and groggy. It exacerbates my blurred vision from Sjogrens. The side effects ease as my body adjusts, but it packs a punch. It also, thank goodness, brought my nerve pain under control. Would this have been unnecessary had I taken an antibiotic that wasn’t contraindicated with ibuprofen? I have no idea.

At least the gabapentin is helping me sleep. And keeping the nerve pain at bay. The levoquin appears to be helping, but I’ll be glad to complete this course and get back on ibuprofen. I have an appointment next week at the Wound Clinic at our hospital to find out how to heal the skin and grow back the nail on my finger—and, I hope, some new ways to prevent this from happening again.

Managing scleroderma is complicated. I’ve learned enough over the years that when I meet a new medical professional, I’m often asked if I am one myself. I’m grateful that I have access to excellent care and that, at least for now, my Medicare still covers it all (another topic for another time). I also am grateful that I can adv0cate for myself effectively. But it is exhausting. Doctors are overworked and miss stuff. You have to pay attention and do your research and speak up. There is no other option.

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: Stefano Pollio

And Then This Happened

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I have spent far too much time with medical professionals of late. Last Thursday, my blood pressure suddenly spiked. I don’t typically measure it. When it goes too high, I just know. My heart, normally gently beating in the background, pounds in my ears and makes my chest vibrate. Usually this subsides. But on Thursday, I was on a wild roller coaster ride with my circulatory system.

By mid-afternoon, I tried to reach my cardiologist at Boston Medical Center, but couldn’t get through. So I called my local geriatrics team and asked for help. They tried to reach him, too, without success. Given my BP readings (I had finally taken some measurements, which were inching much higher than I had even expected and not helping my angst level), they sent me to the local hospital ED.

I absolutely hate going to the ED. Fortunately, it was not too crowded in the waiting room, and I got a bed pretty quickly. While I was lying there, waiting for someone to come and talk to me, I messaged my BMC cardiologist through MyChart. Within a minute, I got a call from the covering cardiologist, which was a godsend, because the ED doc was then able to consult with her. Scleroderma is so complicated, it really is important to have a team of specialist who know the disease when faced with an emergency.

Long story short—they did a chest X-ray, EKG, and blood work, and the final assessment was that my BP spiked because I had taken an OTC decongestant that morning. I was skeptical, because I’ve used that same decongestant many times without this reaction. But my BP was coming down, so they let me go home after a remarkably short three hours, with instructions to start metoprolol, a beta-blocker go-to med for hypertension.

Fortunately, just as we got home, I got another call from the BMC covering cardiologist, who had finally been able to speak to my guy, who had been covering the ICU that day (hence, hard to reach). He nixed the metoprolol, because it causes vasoconstriction and would aggravate my Raynaud’s. Instead, he recommended losartan. This, he prescribed after we were able to talk on the phone Friday. Like I said, it’s really important to have a specialist who knows this disease.

I wish I could say that’s the happy ending. But my BP is still giving me trouble. It takes time for the losartan to build up in your system. On Monday, after a rough night, I ended up speaking at length with my Boston Medical rheumatologist about where things stood and got more blood work done that afternoon. He was quite reassuring, and we have a plan. But he took me seriously, because hypertension in scleroderma is nothing to fool with.

I definitely felt more at ease after sorting that all out with trusted medical professionals, including the nurses and patient care folks who helped me get through the maze of voicemails, messages, MyChart missives, and phone calls to get the answers and action I needed. This will take more time and patience and care, but if there’s one thing I’ve learned from this disease, it’s that you must be your own best advocate.

Looking forward to a few days by the ocean, with my dear Al, to write and just be.

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: Олег Мороз

Delayed Reaction

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A week ago Friday, I checked an item off my health care to-do list when I got my pneumonia vaccination. For older adults, mine was Pfizer’s Prevnar 20, which stands for Pneumococcal 20-valent conjugate vaccine, in case you’re wondering. Basically, it covers a slew of bacterial strains, and as of current practice standards, I won’t need another pneumonia vax, ever.

It barely hurt, and I only had minor aches in my left shoulder for maybe 48 hours. No big deal.

Meanwhile, I’m still nursing nasty multiple ulcers in my left ring finger that have cost me a nail and considerable discomfort for at least six weeks, now, even as it slowly heals.

Thursday evening, after my shower, I noticed an odd, blotchy rash on my upper left arm. At first, I thought it could be hives, which I occasionally get from taking a shower. But the rash did not clear. In fact, it seemed to be spreading a bit.

Now, I have a history of cellulitis when I get infections in digital ulcers. Haven’t had an episode in quite a while, but this was my immediate concern. If you’ve ever dealt with this kind of superficial skin infection, then you know that it can get very dangerous if left unattended, with the potential, if it gets into the bloodstream, of causing sepsis.

Typically, when I’ve developed cellulitis, it spreads in a thick, red line from the ulcer up my forearm. I once had the experience of watching it spread at a rate of about an inch an hour. That landed me at the infusion clinic of my hospital, getting IV antibiotics.

So, even as this rash was in no way connected to my ulcer, I was still worried—indeed, worried enough to have trouble falling asleep, and rising to check if it was spreading several times. That is, until about 2:30 in the morning. I had traced the outline with an eyeliner pencil about an hour earlier and the rash hadn’t really moved. So I took a minocycline pill, which I always have on hand, and convinced myself to get some sleep. No way I was going to the ER to deal with it unless it seemed aggressive.

When I woke up Friday morning, there was no change in size, though the rash had filled in and was definitely warm. It suddenly occurred to me that this might be a reaction to the pneumonia vaccine. During Covid, I had twice developed a rash in my injected arm from the Moderna vax, though never from Pfizer. But this was a totally different shot. Sure enough, I found a few research articles online about delayed reactions to the Prevnar shots, though it’s quite rare (of course—I always get rare complications).

At 8:00 I called our geriatric practice and explained my concern, that I needed someone to determine if it was cellulitis or the vax reaction. I was prepared to spend half a day at Urgent Care, if necessary. So, here’s why I love our geriatric providers: they make house calls. And, it turns out, that even as our NP was not available, they could send a mobile urgent care team to our home. Which they did.

The team was great, and they confirmed my second hypothesis, that I was reacting to the shot, even as the rash was several inches below the injection site. The solution? Zyrtec. Which I started that day, and the rash is subsiding.

To say I’m grateful is an understatement. Fortunately, after four-plus decades of living with scleroderma, I know enough to know what to watch out for and how to get help. And I’m lucky to live where excellent help is available, right in my own home.

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: Louis Reed

A Break from the News

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This weekend, my dear husband persuaded me to get out of the house on a bitter cold Sunday afternoon for a visit to our art museum’s wonderful annual Flora in Winter exhibit. It’s always fun to see how area florists interpret artworks, and given the flood of horrid headlines here in the U.S. of late, the exhibit was all the more refreshing. Seeking out beauty is essential these days, to remind myself what matters.

Here are some of my favorites. Enjoy!

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.

No Easy Fix

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So, here’s what I learned at my optometrist last week, with a thanks to all who expressed concern and good wishes:

My blurry vision is due to the fact that my eyes simply don’t make enough tears, the result of Sjögren’s Syndrome that I’ve had for decades. The relief I’ve gotten from using EvoTears, which form a moisture-trapping film over my eyes, is real, but not enough to keep my corneas truly healthy. So, especially in my right eye, which is more blurred, my vision is effectively analogous to looking through a dirty car windshield. This isn’t cataracts. It’s Sjögren’s. And there’s no point in updating my eyeglasses prescription until my corneas heal, because I can’t get an accurate assessment of any vision changes right now.

The other important fact I learned: The Restasis drops (standard treatment for dry eyes) that I use before the EvoTears are in a castor oil suspension. I need to wait a half-hour between the two eye drops, or I’m effectively trapping the castor oil in my eyes. This explains some of the irritation I’ve been experiencing. So, that’s an easy fix.

My optometrist gave me samples of a varenicline solution nasal spray, which I’ve used before, that stimulates tears, to see if this in combination with both eye drops will help. There are two issues with this approach: First, the spray helps, not not markedly, so far. Second, the nasal spray is outrageously expensive, available only by prescription, and not covered by my insurance.

So, I’m back to finding a way to tolerate the scleral lenses. He checked both lenses for me, and there are no scratches, so however I injured my eye a few months ago was some kind of fluke in the way I inserted the left one. I will need to keep the lenses in at least four hours a day, four to five days a week, to really heal my corneas and maintain them.

With six fingers in bandages right now, including that left ring finger still healing from a lost nail and an infection, that’s a challenge. So, I’ll just need to tough it out with the medications I have until I have better dexterity again. (As a side note, I’m typing with just my left pinky on the left hand right now, and somehow I’ve learned to type by touch and don’t have to look at the keyboard. So, that’s some progress!)

If there is any advantage from dealing with scleroderma and its sidekick diseases for more than 40 years, it’s this: I know my body does eventually heal from assaults like this. It just takes time and a lot of patience and vigilance. As the weather warms and my hands improve in their seasonal cycle, I should be able to master the lenses again and find the right balance. I’m grateful that I have access to excellent care and medications and the scleral lenses, even if they are difficult to deal with. The alternative is much, much worse.

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: Unsplash+