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.

Science and the Scleroderma Girl: Hard Choices (Part 2)

Last week I wrote a post about trying to make a good decision about what drug I should be treated with for my systemic sclerosis. My rheumatologist had offered me methotrexate and CellCept; after trying to gather info about the drugs and their symptoms I unhappily picked methotrexate.

Cat
the Mother of Cats chose badly…

The first weeks of the drug seemed okay. I had a couple of hard days after taking my dose on Monday, but then I would feel much better for the rest of the week as the pain and brain fog receded for several days. The crazy thing was, my knees hurt REALLY badly during those two bad days. I checked online and other people had experience a similar phenomenon, so I soldiered on. Then one week the pain was pretty bad in my lower chest and right side and I was having trouble walking and breathing…

IV in arm.
Off to the ER I went where they hunted for lung damage and blood clots… 

It was an inflammation of the cartilage of my ribs, a condition called costochondritis. I called the rheumatologist’s office to see what I should do next, but didn’t hear back for a couple of days. I then emailed, and called again.

Finally the call came back; I was having a rare bone reaction and needed to stop the methotrexate. He was starting me on CellCept immediately.

Oh, that was an adventure. So much stomach pain… scratch that… stomach fire! Not just my stomach… my intestines were on fire too!! I gulped down spoonfuls of coconut oil trying to baby my stomach lining. I added food with the pills. I started vomiting in the middle of the night. It didn’t matter what I did, my stomach was going to be very upset. I stopped the drug and shot off an email to the rheumatologist again.

Hence began the two month battle to get me onto another form of drug in CellCept, which is mycophenolate mofetil. A stomach gentle version called Myfortic did exist, but it was not approved for systemic sclerosis, so the pharmacy refused to fill it. My rheumatologist filed an appeal. It was denied. My rheumatologist doubled down. Another rejection. Eventually I drove down to the Kaiser pharmacy and talked to the pharmacist as calmly as I could. I reminded him that Myfortic as just another salt of the approved drug, I had failed the approved form, my rheumatologist had appealed for this drug, and that I had a letter on file from another doctor in the Kaiser system stating that my gastritis prevented me from taking NSAIDS or anything else that would damage my stomach lining. I must have looked pathetic, because he gave me the pills.

Three years later I have greatly improved because of this drug that we had to fight for. In the meantime I have discovered (by hunting for info on PubMed Health) that while methotrexate helps with symptoms like inflammation and fatigue, the better choice in the long run is the drug that I am now receiving as it is associated with skin, lung, and heart improvements and better survival rates. I do have a higher lymphoma risk with this drug, and infections are a constant concern, but I think that I’m with the best drug available for me right now.

There is a take home lesson here. If you aren’t happy with your treatment, speak up! I should have contacted that doctor about those hurting knees long before I ended up in the ER. It’s easy to take a passive course when you are dealing with busy doctors and unhelpful pharmacists, especially when you aren’t sure if your symptoms are significant, but it is worth the time to shoot off a fast email anyway.

And let’s be honest. There are no easy choices, only hard ones. But even a bad choice can be corrected down the road with some luck,  persistence, and a dash of science.

Rose
I bet you wondered where the rose was, didn’t you. Here it is, a little beat up by the hot weather, but still looking great!

The Scleroderma Chronicles: The lung results are in.

Spoiler Alert: More good news!!

Last week I drove across town to a hospital that is connected to my pulmonologist’s Kaiser office building for my pulmonary function test. If you’ve never had one of these, there is a machine that you breathe into, a computer that is calling the shots and a sealed glass booth that isolates you from the outer world. Into the booth I went. Time to get some answers!

As part of the test I used an inhaler to get a big slug of the drug albuterol. Wow. That really helped. I’ve been avoiding my inhaler for months as I would feel just HORRIBLE after using it due to dropping blood pressure.

But I just quit using my blood pressure medications two weeks ago and now it was really obvious that my breathing was much better after using the drug. “Here, you’d better take this diffuser”, said the technician giving me the tests. “You’re going to be using this!”

Wednesday my pulmonologist called me with the results. My lungs are better than they were two years ago! More to the point, my pulmonary arterial pressure is down into normal ranges and there is less leakage (okay, they call it regurgitation… what an ugly thing to say about my heart!) at that heart valve. Woohoo!! The fatal complication that we all thought I was going to have to face down is suddenly off the table. I’m not going onto oxygen. My doctor and I virtually hugged over the phone.

Here’s the deal. I have a second autoimmune disease called Sjogren’s Syndrome that can cause small airway disease in the lungs. My Sjogren’s has been pretty bad this year, and since I responded to the inhaler drug really well it looks like that is what is going on. My doctors focus on my bad boy systemic sclerosis so much that they tend to forget about this other life-altering, but not fatal, condition. This year Sjogren’s has been stabbing me in the back.

“Time to start giving your inhaler a workout!”, my pulmonologist told me. “Then try to get more exercise. Your lungs need to continue their recovery, and we are keeping you on the high dose of your immunosuppressant drug.”

Inhaler and fitbit.
I bought a fitbit yesterday and I plan to use the inhaler daily while I steadily increase my exercise. Next week I’m going gym shopping…

It’s the drug. It absolutely is the new drug that I’ve been taking for the last 2.5 years. It is a new drug for the systemic sclerosis community, one originally developed for organ transplant patients, that is now collecting a body of evidence that shows that it not only slows down the rate of disease, but also allows some reversal and healing to occur by impairing the immune system attack on the lungs.  My heart is better because my lungs are better. In a time when I have been experiencing chest pain and shortness of breath, it was because I was getting better and needed to come off some of my drugs, not because I was getting worse. I am completely blindsided and gob smacked by the unexpected turn of events.

Next week is the Estes Park Wool Market in Estes Park, Colorado. I’m off to the mountains and boy will I be running wild with my BKB Deb. I’m going to pet the alpacas, eat lamb kabobs, and then I am going to buy a boat load of yarn. My new fitbit will be getting a workout!

After that I’m going to see my internist so she can look at the big picture with me to see what else we’re missing. There’s another drug that I want to drop…

That will be another post.