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!!

Return to Reading: Three Good Books

I am just nuts about books. I have been, and always will be, a voracious reader who hoards and treasures books. I have multiple copies of my very favorite books so that no matter what happens, I will always have them. (My most collected books so far: Great Maria and Floating Worlds, both by Cecelia Holland.) I can’t imagine going through a day without reading. I have books stacked up in a reading queue and more on hold at the library. I am a reader.

Except that suddenly stopped this spring. Around the time my rheumatologist moved me to stronger drugs I realized that I was having a lot of trouble with vocab recall and speech, and I was really struggling to read. Maybe I just needed a better book, I thought, and kept prowling book stores and the library hunting for that illusive great read. It just didn’t matter; no matter what the book was my mind just skittered around and refused to engage in the story. A book that would usually take a few days to read dragged on for a couple of weeks; by the time I finished it I couldn’t remember what it was about. Crazy. Thank you scleroderma!!

Last month I scored a form of CellCept that would play nice with my digestive system and finally settled into a consistent drug regimen. I think that it actually takes weeks (and months) for the full benefit of these immunosuppressant drugs, but this month I have actually finished three (pretty darn good) books, and the last one I raced through in just a few days. OK, the drug is also causing some sleep disruption, but I’m finally reading again!! Woohoo! Here are the books of October:

stuff
MacKenzie is my reading companion. 🙂

The Girl in the Spider’s Web by David Lagercrantz

This book is a continuation of the Millennium series by the deceased Stieg Larsson. Oh, my goodness. Lisbeth Salander and Mikael Blomkvist are back. If you aren’t already familiar with these characters, let me just say that Blomkvist is an investigative reporter who is the champion of truth, loyal to his friends, famous for huge exposés, and sometimes hauled into court. Salander is… well, she is different. She’s brilliant, a computer hacker extraordinaire, a survivor, a champion, and probably a sociopath. She is broken, and she if fabulous. This book brings back the flavor of the previous books with the same intricate plotting; a murder, a conspiracy, convoluted electronic trickery, and the pace of a perfect thriller. I don’t think that it was quite as dark as Larsson’s books, but it was still a really good read.

The Narrow Road to the Deep North by Richard Flanagan

Sometimes a book is more of an experience than a story. OK, did I mention that I’m having vocab recall and brain fog issues? Reading this book just messed with my head but was so amazing that I kept going. The story unpacks in bits and pieces back and forth in time as we learn about the life of Dorrigo Evans, an Australian doctor of the last century. Dorrigo falls in love, goes to war, survives the horrific ordeal of building a railroad in the jungle as a Japanese prisoner of war, becomes a famous war hero, marries, has children, and carries a book of Japanese death poems. It is a magical story of love, guilt, endurance, survival, betrayal, and endless charges ahead in the face of impossible odds. I’m not completely sure that I understand this book, but it haunts me still.

The Bone Clocks by David Mitchell

The Narrow Road just warmed me up for this one. Once again I was reading a rich and complex novel that centered on the life of one anchoring character, Holly Sykes. The plot is broken into 6 segments that move forward in time (thank you, Mr. Mitchell!) but also loop and reconnect to characters and events in the other sections. Holly is extraordinary in that she hears voices and has accurate premonitions; the plot deals with these supernatural elements but also builds rich characters and situations that kind of left me stunned. It was with this book that I realized that I was once again a reader. I was immersed in the story, drawn to the characters, and caught off guard by twists and turns in the plots. This book had several story threads going at once, and it should have been confusing, but it wasn’t at all. I loved it and even cried at the end.

Three good books in a row! When I logged them into Goodreads today I noticed that two of the books are on a list for the best books of 2015, and the third is on the Nook Best Books List. Yep! They were just great and what I needed to return to reading. The number one book on the 2015 Tournament of Books list is one called Station Eleven. Hey, it is a science fiction! Hmmm… I may have to check that out.

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.

Wednesday Update: Shawl, Sock, and a Rant

What a beautiful morning! My backyard filled with birdsong early and the cats began clamoring to be let out, so I got up, made a latte, and joined everyone in the early sunshine. It’s too soon for flowers (except dandelions which are now in full bloom!), but the promise of summer is there for the taking. My trees are blooming and there are little buds where the leaves are getting ready to burst out. It’s hard to not get a little excited.

I took advantage of the light to get knitting pictures. I finished a shawl over the weekend. Here it is:

Shawl.
I made a simple garter stitch and eyelet shawl from a skein of wildly painted yarn. You can visit my Ravelry project page for more info on the shawl here.
Close up of shawl.
Here’s a close-up of the tip. There was a lot of color in the yarn!
Shawl on denim.
Here’s the shawl on denim. The colors look great combined with several things in my wardrobe. Yeah!!
Amazing yarn.
The original skein of yarn. It was a little intimidating with that “becoming art” label, but I’m happy with the product.

Now that I have one of the two shawls that I am working on finished I felt that it was OK to cast on the April 2015 sock. Here she is!

Sock
I am so happy with the way the grey is calming down the extreme wildness of the hot pink painted yarn. The pattern is great for television knitting, too, so I made a lot of progress last night.

It was a really great week for me knitting-wise. I even coated myself with the best sunscreen on the market (SPF 60!!) and went out and planted my new roses. There were a lot of positives for the week except for… my scleroderma decided to kick my butt. My leg muscles now hurt, my knees have become swollen, red and warm to the touch, and I’m dizzy in the mornings. I have edema in my arms and legs. What is up with that!! My rheumatologist gave me some drug information to read (I get to pick which drug I prefer of two possibilities. This sounds pretty good, but during the week I realized that these are chemo drugs that I will be taking at a lower dose than cancer patients get. Bummer!) Still, I was having a happy week and being positive until one of my neighbors stopped by to talk to me while I was planting the roses, and he mentioned that if I would get out more often to exercise and get sunshine I would “get well”.

He meant to be encouraging. He’s really not all that bright; he doesn’t get “chronic”. I was polite, but once I got back into the house I was ready to rant. Don’t tell chronically ill people that they can “get well” if they just change their diet, get more exercise, meditate, get off gluten, take vitamins, or whatever else occurs to you. It’s almost like suggesting that it is their fault that they are sick. I know that while it is human nature to want people to “get well”; it is insensitive to suggest that this is within the power of the person who is dealing with a disabling, progressive and incurable disease.

On the other hand, I need to pick a drug. Once I calmed down I e-mailed the doctor to let him know that CellCept sounded pretty good. Some scleroderma patients in forums are claiming to be in remission. That sounds pretty good to me. The downside? No more sunshine for me until I’m off again.

Midnight gardening? I can do it!!