Posted by: randommisfires | February 2, 2010

A little insight to RA

brutal but effective weight loss

Since I’ve been so vocal about my methotrexate treatment on Facebook and twitter, I’ve been getting a lot of questions about Rheumatoid Arthritis and the medicines used to treat it. So, I want to answer a few of those.

I was diagnosed with RA in Oct 2002.  My family, having listened to me complain about my joints for years but never seeing any diagnosis, assumed I was making it up for attention.  Rather, I’m one of 30% of patients that have what’s called seronegative (meaning not a lot of markers in the blood) RA.  So, it’s reasonable that it was missed for a number of years, until the damage started showing up on X-ray.

It seems like this sort of response for family is a fairly typical one, especially with autoimmune (your body attacks itself) illness where often the person’s outward demeanor doesn’t reflect the pain and fatigue they feel on a daily basis. And my reaction to it was to simply stop talking about it, to act like everything is normal.

In 2005, I did a long (9 months or so) course of methotrexate and Enbrel which greatly improved my joints and daily function.  I then moved on to a study medication that made me feel totally normal again, other than the day of injection. And when the study ended, I found that my inflammation (in pretty much every joint in my body, but most painfully my left hip, both ankles, right shoulder, hands, wrists, and feet) was really well controlled with ibuprofen and occasional doses of prednisone for 4+ years.

But, as stresses mounted in life with work, kids, marriage, travel, it became obvious that I was going to need to go back on medicine again.  So, here we are.

Insurance now dictates that we start with the methotrexate.  Mtx is a chemotherapy drug, used to treat cancer in doses of 50-100 mg per week.  For RA, it is used in smaller doses, 10-25 mg per week.  When taken with folic acid, a majority of patients don’t have any real side effects from it.  One day of lethargy or mild stomach upset seem to be the most frequent.  And when injected rather then taken in pill form, those seem to largely abate.  I’m not so lucky.  Although not completely out of commission, I spend several days each week unable to do much of anything and I’m unable to eat very much.

I’m willing to give it a 6 week trial to see if my body adjusts to it.  It’s been the case for many other patients.  And I’ll almost certainly be adding a biologic (new RA drugs that fight the body at it’s own game rather than shutting the immune system down like the mtx does) to the regimen as well so that I can stop having the joints of a 100 year old.

On the plus side, mtx is a brutal but very effective weight loss program.  What? There has to be a silver lining. . .

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Responses

  1. Best of luck w/ metho. It’s practically required w/ the Biologics because it can help you from developing antibodies against the medicine.

    Sorry about the “effective weight loss program” thing. I do get a day or so of “kicked by an elephant feeling.” But it’s worth it to do all I can to extend & improve my life. This thing killed my grandfather before these meds were around.

    I’m really curious: did a doctor tell you that you did not need to be on treatment for 4+ yrs during your remission, if it’s ok if I ask. It’s ok to reply privately if you’d rather not say.

    • No, the doctor was rather upset with me. But the mtx was so bad, it took me 4 years to go back in for another round.


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