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!
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Science and the Scleroderma Girl: Hard Choices

Everything happened really fast when I was first diagnosed with scleroderma  and Sjogren’s Syndrome. I had been referred to the rheumatologist after the results of bloodwork that my PCP ordered up. The rheumatologist did an exam and some tests, told me that I had the form of scleroderma called limited systemic sclerosis, and was evasive when I asked him what this would mean for me in the long term. What would my life be like in five years, I asked. He said he needed to run some more tests and would get back to me. He also told me to stay off the internet.

Well, that was kind of ominous, don’t you think? My first clue that this might be rather serious…

I was given a prescription for a disease modifying drug (DMARD) called Plaquenil, a handful of pamphlets, and referrals for additional testing. Lots of testing. Waiting for my prescriptions to be filled I went to the lab to get blood drawn and then sat down to call to make appointment for the additional testing I needed. It was hard to not feel like the sky was crashing down on me.

Cinco de Mayo rose.
Hey, time for a rose break. Look at what is blooming in my garden this morning! 

After 6 months of the drug Plaquenil I was feeling better, so I was a little shocked when the rheumatologist told me that it was time to add additional drugs and that he was going to give me the choice of methotrexate or CellCept. He handed me information on the drugs, ordered more blood tests to determine the state of my liver, and told me to call back in a week to let him know which drug I was comfortable with.

Of course I went straight to the internet. Hello. Science girl here. How should I make a decision without more information? Time to put all that chemistry and molecular biology to work!!

Ugh. After researching both of these drugs it didn’t look too good to me. Methotrexate is actually a chemo drug, given in a lower dose to rheumatology patients to suppress the immune response.  I would need folic acid to try to minimize hair loss and other side effects, and it would knock me on my butt for a day or two each week. CellCept also suppressed the immune system by another pathway, had fewer side effects, more risk of cancer, and was really hard on the stomach. Both drugs had definite downsides. I would need to stay out of the sun to prevent DNA damage. My risk of serious infections, including  PML, a fatal brain infection, would go up. The side effects of methotrexate seemed to be worse to me, but the CellCept would be awful on my gastritis…

If I chose to remain untreated with either of these drugs my chance of developing a fatal complication from scleroderma went up. I was already in the early stages of interstitial lung disease and pulmonary arterial hypertension, both of which could be fatal, so I really did need to try to slow things down with a drug…

Ugh! I was feeling pretty helpless about making the decision. What should I do when the future was unknown? Everything was a gamble and I didn’t have any really good choices.

I called my rheumatologist and told him I wanted to try methotrexate because I was pretty sure that I wouldn’t be able to handle CellCept. It was done.

Jacob sheep
Science and the Scleroderma Girl will be taking the weekend off because tomorrow I am going to the Estes Park Wool Market with my BKB Deb. Any day in the mountains is a good day, but it will be even better with yarn, peeps, and cute sheep. Woohoo! Fiber festival time!!

This whole process was kind of awful. Just knowing how these drugs worked and their side effects wasn’t enough. I needed more info. I needed to hunt down research studies.

Science time!!

The Golden Hour

It’s here! It’s here! The most wonderful time of the autoimmune disease year. Fall colors, cooler (but not cold) temperatures, sunshine levels that won’t make me sick, pumpkin spice lattes at Starbucks, and wood smoke. Pumpkins and autumn squash soup. New yarns at the yarn store and patterns for warm sweaters. Ugg boots!! Without fail I have a surge of joy and energy at this time of year. Just like the golden hour in photography, that time in the evening when everything is softened and has a glow of light to it, this is my golden hour of the year.

Sunset
Look at this sunset! I took the picture while sitting at the stoplight. Doesn’t it make you happy? The golden hour is the hour before this as the sun was just dipping down towards the mountains in the west. Here is Colorado it makes the Rocky Mountains look softer and plush; there are sunbeams and everything looks wonderful.

What’s wrong with the rest of the year you ask? Well, let me tell you: winter is a beautiful time of year, but for a person with systemic sclerosis and Raynaud’s disease, it is a miserable battle to keep extremities warm an opportunity to rock the wool socks, shawls and fingerless mitts. This year I plan to roll out some exceptionally warm longish sweaters; I have the yarn all ready to go. I have patterns for fingerless mitts that will go up to my elbows. I bought fleece Cuddle Duds. I am really going to try to handle the cold better this year; last year I rolled out of winter with more severe symptoms than I had in the fall.

Rose
Look how great this rose looked last spring. It should be a wonderful time of year for me, but…

Spring is a time of gardening, hope and struggle for me as I try to get the garden’s flowers (and roses!!) going while slowly accepting that new debilitating symptoms that I thought were related to the war against cold, but which remained in the balmy days of April and May, were actually real things. Darn! No wool sock or hand warmer will fix my problems… by the time I make appointments or call for help it is already summer.

Ugh! Summer! I was a teacher, and summer was that wonderful time of renewal and rebuilding that kept me going year after year. Now summers are so fraught that they seem to pass in a blur of lawn watering and visits to Kaiser. Really, I am just a mess all summer long. Here’s the highlights of this year:

  • Summer started with me just a few weeks into the drug methotrexate (which I got after making a call for help in early May…) I was losing hair and taking it easy two days a week because of the drug’s side effects. Still, by juggling the drug schedule I was able to work a summer camp teaching kids how to spin and felt fiber. So fun. The camp was only 2.5 hours a day so it was perfect.
  • In July I developed rare bone complications from the drug (well, don’t I feel special!) and ended up at an acute diagnostic facility. That was the end of the methotrexate.
  • Icky symptoms reappeared with a vengeance. I had to wait a few weeks before I could start the new drug. It’s called purgatory drug holiday .
  • UTI strikes. Seriously!! Antibiotics, barfing and yogurt happened.
  • Rheumatology appointment: he starts me on CellCept with some reservations about whether my gut (which basically hates me…) can handle it.
  • I start the pills.  Woohoo! No problems except after two days…
  • …UTI strikes again. Oops! I stopped the CellCept, gobbled antibiotics and yogurt, and skipped the barfing. Take that you ill-behaved gut!!
  • Started CellCept again the next week. Hello heartburn, my old friend.  Middle of the night vomiting and belly pain?  Nope, nope, nope. My gut has definitely vetoed this drug! I didn’t even make it a week before I emailed my rheumatologist to ask for something else from the land of pharmacological wonders.
  • Well, what do you know. There is another version of the CellCept that is a time release version that I should be able to stomach (see what I did there?). My rheumatologist and I had an email chat and he ordered it up for me.
  • …and the insurance declined to approve it. What?!! I wanted to send my gut on over to have a chat with them. Two visits to the pharmacy, two phone calls and an invocation of the gastroenterologist did the trick. I scored the pills on the last Friday in September. Yep. That was the end of summer and it is now time for the golden hour.

I started the time-released version of CellCept 10 days ago. You know, I think that I feel better already. My knees have stopped hurting! I seem to have more energy. I think that there is less edema in my arms. I have started cleaning out cupboards and stuff. I am happy.

Maple leaves
Look at these leaves! This is the maple tree in my back yard.

This is my year of systemic sclerosis (scleroderma): cold, pain, hope, struggle, persistence, and wonder. And this, my friends, is the best part of the whole dang year. I am full of joy with every red leaf and pumpkin that I see. I know that the snow is coming, but what the heck.

Today, today I am in the golden hour.

Happy Knitting: August Socks and Yummy Shawl

I am on drug holiday from methotrexate (the drug that was given to me to treat my systemic sclerosis) right now and I feel great. I have energy, my joints and muscles are happy, and there isn’t even a hint of dizziness. OK, my ribs are still sore and I have to be careful moving around, but still… Wow! It’s been more than a year since I’ve felt this good. It is now obvious that, even though there were side effects and some of them forced me to quit methotrexate, it was working. My goodness it made a difference. I am gardening, cleaning house, cooking up a storm, and rocking the knitting. Happy, happy, happy.

In the middle of upbeat gardening yesterday I remember that it is also August. Time to cast on the New Year Resolution socks for the month. I dug through the sock books again, found a happy looking pattern and hit the yarn stash to search for a cheerful yarn dyed with long color sequences. Here’s what I came up with. Say hello to the August Socks:

Yarn
Isn’t this the happiest yarn you have seen all week? Agave Fingering by Becoming Art Yarn in the colorway “Cherry Tart”.
Sock
Doesn’t this pattern show off the yarn well? This stitch is called Seafoam Stitch, and the sock is Galvez Socks by Debbie Haymark. The pattern is in my copy of Lace One-Skein Wonders edited by Judith Durant. Here are the project notes on Ravelry.

As much as I like the seafoam stitch I think that I won’t continue it down the top of the foot of the sock. I will be wearing these socks inside of shoes all winter and I’m wanting the socks to be really warm and long wearing. If the colors pool badly in the foot it won’t matter that much to me at that point. With cute tops like these, nothing can happen in the foot that will spoil things. 🙂

When I dug through the stash I also found this yarn that I bought on a whim but still hadn’t knitted up because it is really busy in the colors. I’ve been waiting for the right pattern.

Yarn
This is Zen Yarn Garden’s Serenity 20 in the colorway Confetti. This yarn feels so great it makes me long for winter. There are a lot of colors in this yarn. How to show them off while breaking them up a little at the same time?
Shawl
Solution: Reyna Shawl by Noora Naivola. The pattern has a lot of garter stitch and sections of mesh lace that should highlight and then breakup some of the colors in the yarn. The edging and center stitch is a little different to me, but it is nice to learn new things, right? Further down the shawl there will be a lot more lace and the yarn will look different. I can’t wait to see what happens when I get to that part of the project. Here are my notes on Ravelry.

These two projects have kept me pretty busy but I have also been out in the garden. I sewed on the garden chair a little more and started attaching the sides to the frame. It is stretching out just right but the midpoint is refusing to slide on the frame; it still hasn’t expanded to the correct proportion. I soaked the stiff area with the hose this afternoon and left it to think about what it was doing for awhile. Let’s hope that does the trick as I’m afraid to tug on it too hard because my ribs are still sore.

Chair
I’ve sewn the fabric around the bar at the back of the seat, and am now crocheting the sides to the frame. the seat is now stretched to the correct tautness and feels great to sit on. I’m not too focused on the appearance as I have cute seat cushions that will be on top of this seat. Can’t wait!! I should be in the garden swing reading by next week.

I’m on drug holiday until I see the rheumatologist on the 20th. Let’s hope that I stay symptom free until then because I am totally focused on happy right now.

New Chinese Curse: May You Have An Interesting Disease

It has been two months since I started the drug methotrexate for my systemic sclerosis (scleroderma). I put off starting the drug for a few months as I was concerned about potential side effects (well, for one thing, it increases the chance that I will develop cancer. Since I’m now at high risk for lymphoma that kind of gave me some pause…), but struggling with fatigue and other annoying symptoms I finally made the call to my rheumatologist and started on the drug.

The first month was a little hard; nausea, headache, more fatigue, and what I called the dizzy-wobblies. My hair started falling out. By the second month, however, I began to notice that my muscles had stopped hurting. I had more energy. The edema in extremities was definitely much better. I was out of the house and doing much more. Hey, this is improvement. Go methotrexate! I was ready to make the pom-poms and sign up for the cheer squad.

Then more downsides began to emerge in the second month. I started to notice that my knees really hurt the day after I took the methotrexate pills. As always, I checked the Internet to see if anyone else had noticed this. Yep. It’s a thing.  I decided to baby my knees a couple days a week and to keep on with the drug. Then my back started to hurt, I noticed a rash on my arms the same day that my knees hurt, and itching became a thing. My ribs started up with shooting pains. The pain spread to the entire right side of my lower ribs, I struggled to breathe and it was hard to raise my arm. Yikes!! The pain was so widespread it didn’t seem reasonable that it was just a cracked rib…

IV in arm.
Here I am with the IV tapped off so I could make the trip to the CAT Scan machine.

That’s how I ended up at the acute diagnostic center run by Kaiser for we after-hours folk that don’t want to go to the ER. (The ER has sick people. When you are on immuno-suppressants you avoid sick people like the plague!) The nurse was nice. The doctor was great. The words “possible blood clot in your lung” and “we want a CAT scan right away” were said. I would have been more upset if they hadn’t also just said “we’re giving you morphine to get this pain under control”. I would have hugged that nurse if I could lift my arm.

Then she blew it. As she stuck me with the needle to start the IV she said, “I once worked with someone who had scleroderma so I’ve heard of it before. Such an interesting disease. She did develop heart problems though, which was sad since she was so young.” Great. This is sort of like a Chinese curse: May you have an interesting disease. I grumped about her comment to my son who was there with me. “Well, you have to admit, it is kind of interesting,” he said.

Aside: It is an interesting disease. One of the great ironies of my life is that I have a degree in molecular biology and once worked in a rheumatology research lab on a scleroderma project. My boss Dr. Angeline Douvas and I at that time used the auto-antibodies from scleroderma patients to capture and identify the protein SCL-70 (topoisomerase). We spent a lot of time speculating about what was going on in these patient’s genes and why that was manifesting itself the way it was in their clinical symptoms. We were suspicious that it might be triggered by a virus. Here’s the paper: I’m the second author. Angie would find my diagnosis to be so interesting but she passed away in 2000 before I became sick. Yep, it is all so interesting. Anti-centromere antibodies! What the heck is going on here?! This is an important disease that should be researched not just for a cure to help people who have it, but to also gain essential understandings about cells and genes that can be used in the treatment of many other diseases. As it turns out there is a bill in congress right now concerning scleroderma and fibrosis research and you can contact your congressperson using this link.

Still, I found the nurse’s interested detachment from my personal situation to be somewhat appalling. Still in pain I was wheeled off for the CAT scan, and then waited for my chat with the doctor. NOT a blood clot. NOT my liver. They could see old breaks in my ribs (thank you osteopenia) but NOT a current one. It turned out that it was inflammation of the cartilage in my ribcage, a condition called costochondritis. It’s a scleroderma thing, just another bump in the road when you are dealing with a complex medical condition. Fabulous. The Internet tells me that it usually resolves within a year. OMG! A year??!!! That’s a lot of pain killers! Oh wait; that’s a lot of knitting! Best to look on the bright side.

The next morning my rheumatologist’s office called to let me know I should stop taking the methotrexate. Farewell, methotrexate. It was nice getting to know you but you didn’t play nice with my cartilage. I now have an appointment with my rheumatologist on the 20th and he will discuss my new drug options with me then. I’m sad to let methotrexate go, but so glad that there are other drugs out there waiting for me to try them out.

Just another day in the life of an interesting disease.

FO Tee, a Garden Swing, and an Excited Spinning Wheel.

I know that I have been a little whiny lately. I started methotrexate a little over a month ago and the adjustment to the new medication has been challenging to say the least. This week was better. Much better.  So sorry for the whining. I promise hope that I won’t be doing that again for a long time. Check out all the things that were accomplished this week.

Knitted Tee
I got the Clove HItch Tee finished! Here are the project notes on Ravelry.
Tee Sleeve.
Look at how cute the lace detail is on the sleeve. This yarn is a linen blend and will be cool to wear even though it is a worsted weight knit.

The whole time I was knitting this tee I worried about how big the neck opening was. As soon as it was cast off the needles I tried it on, and yep, too big. I ran a drawstring around the neckline on the inside to draw it up a little and to prevent more stretching. Neckline problem totally fixed: it fits great! The top is loose and a comfy layering piece. I’m thinking that I would like to make a second one with long sleeves using a winter yarn that will be lighter in weight. Maybe in navy blue. I plan to keep that garter stitch band on the sleeve and will continue the sleeves in stockinette below the band.

Crocheted lawn seat.
I have now crocheted the entire back of the lawn swing and am continuing on to make the seat. I draped this over the back of the swing; it’s longer than it looks in the picture.

The lawn seat is coming right along. The fabric will stretch when I sew it into place so it will be more open looking when it is done. I haven’t completely decided how to attach it to the side pieces of the frame. I’m afraid that the attachment solution won’t be very elegant, but hopefully it will be functional.

Wednesday I went out to visit a friend’s alpaca ranch (she has sheep too!!). I am consumed with jealousy. Such cool animals wearing fabulously cool fiber; she has a whole dyeing and processing operation going. I didn’t take any pictures because next week there will be a summer camp there and I get to teach kids how to spin! Ha! Stay tuned for the summer camp report. 🙂

Today I took the car to get its oil changed and battery replaced. I know that this sounds like a small thing, but I am rocking my good week and getting a lot of things done. After I got home I cleaned out the garage and packed my spinning wheel into the car because tomorrow we go to a class to learn how to spin camelid fibers.

Spinning Wheel
Look! The wheel is already strapped into the car and ready to go. It is so excited! This is its first trip out in almost a year; no more sulking in the corner for this little guy.

That’s right. I still have a bag of paco-vicuna that I am nervous about spinning. The spinning class is taught by Chris Switzer who has quite a reputation as a master spinner of these fibers in this part of the world. I am taking the paco-vicuna bag and a chunk of my alpaca fleece with me to the class to get feedback on spinning techniques for the yarn that I dream of creating. Not that I’m intimidated, but the class registration says to bring some things that I’ve made from my homespun yarn with me. I have spent an hour finding things that I’ve made; I’ve decided to only take two three things. Maybe three is too many? If I take two substandard items she might think it’s a fluke. If I have three, it’s pretty sure that’s the type of spinner I am. Whatever. It’s best to not overthink this. I’ll take three that I like and that will be that. I’m taking the class with a friend who likes to spin crazy lace weight yarn and it is going to be wonderful!!

I finished reading all of the bee books this week too. I feel another post coming on. Some of the books were a little bit of a chore to finish, others were just amazing. Hmmm….