RAers- help thy brethren- ‘RA voice campaign’

September 5, 2010

Let me confess that this post has been inspired by Sara’s (twitter@stableantics) recent post. Recently, when she was depressed with the aggressive RA, the negative posts about RA on the internet made things even worse for her. She wished that there were some positive posts about RA from RAers whose treatment was working.

I’m sure most of you must have gone through a similar experience. Most of the blogs are full of negative thoughts about RA & the various DMARDs/ biologics. (surely, there are a few exceptions like rawarrior who have been spreading awareness about RA as well DMARDs.)

The negative thoughts work in a different way as well. I saw a young lady with RA some 7 months back. She had symptoms since 2 months. Given the short duration, she had the best chance to go into remission. I explained her about RA & told her about Methotrexate. She came back the following week. The first thing she told me was that she was not convinced that she would ever do well. The next thing she said was that she would not go ahead with Methotrexate. She cited the side effects of Methotrexate as the reason for the decision. I was taken aback. It did not take me long to find out the reason for the same—the internet. She had visited numerous blog- only to find (get misinformed) that RA never ever settles with the best of treatment & Methotrexate is a bad medicine to take.

How did I manage to convince this lady? I asked my secretary to help her with a small quick survey. She spoke to all the patients in the waiting lobby. 90% were doing well, with their RA controlled. Only one of them was not comfortable with Methotrexate.
So, she made up her mind to start Methotrexate therapy. Presently, she is in remission. I requested her to post a reply on the blogs she had seen. But, she got so busy & interested in her career, kids that she had no time to surf the net, go back to the blogs & put in a reply!!

Similar to this lady, RA’ers who improve with treatment generally don’t interact on the internet or take part in blog discussions as they are not as much hassled by RA. However, those with persistent disease tend to take part in online discussions & this increases the negative comments about the disease and the drugs. This is a normal human tendency & one cannot be blamed for the same.

So, can RAers who have done well stand up & be counted. This is an earnest appeal to those RAers who have done well with treatment. In fact, in practice most of the RAers do well (especially those who have been diagnosed early/ treated with DMARDs early). All the RAers may not be as fortunate as you have been. Some of them have persistent pain despite the best of treatment. However, a few encouraging words from your side can make a huge difference to them as well as to those who have been newly diagnosed with RA. This is the time for you to give back to the community & internet what it has given to you. You may share your experience about the conquest over RA here. I am starting the ‘RA voice’ campaign. Please be a part of it & help other RAers.

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