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: Research Results

Yesterday was a good day for me. I ran to the library, went grocery shopping, and had my hair cut. The stylist who cut my hair, however, was having a poor day: she has fibromyalgia and was struggling with the pressure front moving through Colorado. I told her about bananas, and she told me about a new product that she was buying off the internet. As we swapped info she pulled out the bottle of her supplement and I snapped a picture of it with my camera. She gushed about her product: it is just great! It cleans toxins from your liver and pancreas too!

Okay, I just checked out this product  online, and it will need a blog post of its own. It has 19 different ingredients in it that I have to check out, but right now I think that I will need to stay away from it as it has aspirin in it from a willow bark ingredient. I already know that aspirin is something that can hurt my (already struggling) kidneys and put my stomach lining at risk (the gastroenterologist sent me a strongly worded letter on this topic… I’m complying!)  The other ingredients might be okay, however, and I should check them out to see if they are possibilities for me to add to my diet.

So, how do I do this? I do lots of searches with key words like “research”, “evidence”, “inflammation”, “mortality rates”, “efficacy” and the item that I’m searching for. When a friend recommended that I try tart cherry extract to help with inflammation I typed in “does tart cherry reduce inflammation” and discovered that there was an active ingredient in tart cherry that really did reduce inflammation and that it was more gentle on stomach linings than a NSAID. Clinical research projects had been done that showed positive effects by measuring inflammation markers in patient blood. I talked to both my internist and my rheumatologist about it, got their okay with some stipulations, started the supplement with medical monitoring (blood drawn every month), and had to stop 3 months later when my kidney function dropped dramatically. Oops.

There is an important lesson here. Just because something is “natural” doesn’t mean that it is safe. Think like a scientist. Keep a journal of your disease symptoms, diet and interventions. Ask questions and talk to your doctors. Educate yourself as much as you can.

English Rose.
Time for a rose break! Look at what I found in the garden this morning!

Where do I go for information? I could have gotten info from sites linked to the company that markets tart cherry extracts, but that information is somewhat tainted by the simple fact that they want me to buy their product. I look for information from major publications and research funded by the public domain. Some of the best places that I’ve found to go are:

  • The National Center for Biotechnical Information (NCBI) has links to lots of places you can access for information. I used this site a lot as a teacher as students could look at genes and run DNA comparisons. Now I can use it to research tart cherry!
  • Linked to the NCBI home page is a great resource: PubMed. Everything in the medical and biological universe is searchable at this site; you can see the synopsis with a general outline of the research and results,  and there are links to the journals and books along with information on how to access the full text. Some full text articles are free, and there is advice on how to get others.
  • A subset of PubMed that is extremely useful, both for the search engine and information on how to evaluate information you find, is PubMed Health. For me, this is the mother lode.
  • I live in Aurora, Colorado. I am lucky in that the CU School of Medicine is located here, and there is a great library there. I went into the library, talked to them, and got an account that allows me to access articles through their licenses. So far I’ve only had to resort to this option a couple of times, but it is good to have it.

Next to keeping my journal, the info I find using these resources has been extremely helpful and empowering in my battle with these ill-behaved autoimmune conditions.

Knowledge is power!