My History

I wrote this page so you all will know why I am not using any conventional drug therapies to treat my RA. It’s a little bit intense, but I tried to water all the info down so it would read easier.

Part 1: The Beginning

When I was first diagnosed 8 years ago, the most effective drug on the market was prednisone. So, I began taking that and prescription level doses of ibuprofen (1200 or 1800mg a day, I believe, but I can’t remember exactly). Prednisone is a synthetic version of a natural hormone in your body that controls inflammation. People with autoimmune disorders take it to control an over-active immune system. I stayed on this medication for about five years until I was advised to switch medications because prednisone has potentially dangerous side effects if taken for long periods of time. These are: Type II diabetes, weight gain, depression, osteoporosis, and glaucoma.  So, I began a new drug called methotrexate.

PART 2: Methotrexate

Methotrexate is a drug that was traditionally developed to treat cancer patients because of its ability to slow cell growth. It works in arthritis patients because it slows the growth of immune cells that are attacking the joint cartilage. You take it once a week. I started getting really bad nausea the day or two after I took it, so my doctor switched me to the injection form of methotrexate. I continued with this for a few months until it wasn’t enough and we decided to add another medication called Enbrel.

Part 3: Too Many Injections

Enbrel is the one drug that I didn’t bother to figure out how it worked.  It was something about being a “TNF inhibitor”–meaning it blocks the production or the action of one of the cells in the immune process. When this cell’s action is blocked, the signal to bring more cells to attack doesn’t go through. That’s my best interpretation. Enbrel worked pretty well, but the injections wore on me. Then, in my senior year of high school, I caught mono. I had to stop all medications so that my immune system could work on getting me well.  The blessing that came out of all of this was that my arthritis went in to temporary remission. My best explanation for this was that I went about a week not eating anything because I had no appetite, thus eliminating all foods that I was sensitive too and giving my digestive system a chance to heal. The horror that came right at this time was what I now call “the lymphoma scare”.

Part 4: Temporary Remission and The Lymphoma Scare

Lymphoma is cancer of the white blood cells. I listen to t.v. commercials for Enbrel these days and right at the end the woman says “Serious side effects could include: lymphoma, serious infection, etc…” I was seeing a Hematologist (blood specialist) because of having mono, and he is the one who noticed that I had a large colony of identical white blood cells. Long story short, we did a bone marrow biopsy, got a second opinion from Johns Hopkins, and I was diagnosed with LGL (large granular lymphocytes).  I continued to see the hematologist because the only thing to do at that point was to monitor the colony of LGLs. Eventually they disappeared and eventually the arthritis began to flare again.

Part 5: College and A lot of Allergic Reactions

When I arrived at college I was still off of all meds, but my mom and I knew I would have to start taking something soon to control the inflammation. So, my doctor (at this point I was seeing my third rheumatologist, because we had trouble finding one that we liked) started me on Plaquenil. Plaquenil was developed to treat malaria victims, but was also discovered to provide relief to rheumatoid arthritis patients. The reason is still not known. I ended up having a horrible allergic reaction to this drug and we switched to a drug called Sulfasalizine. I’m not too proud of this decision because I didn’t keep a careful watch on what drugs I was putting in my body. What my mom and I didn’t know at the time, and what my doctor somehow missed was that Plaquenil contains sulfa, a compound that many, many people are allergic to, which is why I had an allergic reactio to the drug. Sulfasalizine, as it’s name implies, also contains sulfa. Why my doctor prescribed this drug to me after my alergic reaction to Plaquenil still baffles me, but in the end we switched rheumatologists again and began a new treament phase.

Part 6: Sick of being medicated

I decided to take a break from experimenting with meds and just went back to the tried and true: methotrexate.  I stayed on this for about a year until my 4th rheumatoligst took some x-rays of my wrists and found that some of the bones were beginning to fuse. This is a sign of severe joint damage and deterioration and frankly it scared to shit out of me. From that moment on I cried just about everytime I had to think about my health. We decided after about four months of procrastinating to begin taking Orencia. One of the newest drug therapies. And when a drug is new, it also means that all side affects are not yet known. This is what scared me the most and caused the four months of procrastination. After 5 infusions of this drug (once monthly through an i.v.) I caught a cough that didn’t go away for three months. See the About Me page to find out the rest of the story.

That concludes my history with drugs. I am currently on 7 mgs of Prednisone (Feb 2009) and hope to be off of it complelety by March 1st 2009)

Advertisements

2 Responses to “My History”

  1. Thank you for your lovely comment. I have browsed just breifly at your blog and feel like it could have been me in my college years. I started my RA journey later in life however we seem to have lots in common. I look forward to getting to know you and to exchanging stories. I am certain you have read that I too believe diet to be key and sticking too it has never come easy for me. I have been med free for 4 months and feel it is right for me. Stay true to your heart.

  2. Hi. Wow you have been though a lot. Jra is very trying. I have a 4 year old son that was diagnosed when he was 1. So I understand your pain.

    If you live anywhere near nyc or nj – there are so many fantastic pediatric rhuemetologists that I can rcommend. Personally, I see dr. Thomas lehman out of hospital for special surgery.

    Go to http://www.jraheroes.org if you want to contact me.

    Aslo, we have a group that raises money and puts on events for jra if you want to get involved.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

 
%d bloggers like this: