Thursday, May 31, 2012

Fear of Drugs

By Emily Tuesday, August 19, 2008

I've seen a lot of posts on here about how afraid some people are of taking prescription medications to handle their RA. I thought maybe my story could help. It all started in July 2007 with a numb feeling in my hands, like they had fallen asleep. I was 34 years old, had never been seriously sick and I thought it was nothing. After that came joint pain and swelling. I went to three different doctors and they couldn't make up their minds what I had. My hands swelled up painfully huge, it hurt to turn my head to the side, getting up after sitting for just 5 minutes was excruciating, and by Oct I couldn't zip up my pants and was barely able to drive to work. Thankfully my regular doc knew of a really good RA specialist and she pulled a few strings to get me in to see him. So I go to this rheumatologist and he takes one look at me and says you have RA. He has me do the blood work and sure enough I had RA. I had been tested previously by my reg doc, but apparently I have a rare form of RA that doesn't always show up on the normal test. As soon as my results were in my RA doc said that the choice was mine but that he strongly encouraged me to be aggressive in my medications. While there are side effects (and some pretty ugly) he said that if I did not do anything to prevent the disease from doing any permanent damage that I could probably count on being bedridden by age 44. He sent me home to think about it. I went online, I looked up all the side effects and I talked to people who had it. I finally decided that I would go with the agressive treatment. It wasn't a hard decision for me really-I wasn't ready to give up my job, my family and my hobbies so I decided to fight. The next step for me was to find the combination of drugs that'd work. It sounds easy but it wasn't. First I tried prednisone and it worked but I really didn't care much for the side effects and it didn't cut down the swelling in my hands at all. Then I tried methotrexate, first 3 tabs, then 6 tabs and then 8 tabs a week to no avail. Then I went back down to 6 tabs and levothyronin, that didn't do so well either. So then the RA doc told me to look at the drugs the next level up and that was scary. Bronchitis, lymphoid cancer, severe rash, kidney failure, the list went on and on. But what choice did I really have? Pain medication would not keep my body from being permanently damaged. I told my dr that I'd like to try Humira. So I started giving myself shots (I'm deathly afraid of needles, but I did it!). And then I waited and waited...and it wasn't working very well. I was devastated. I felt like I was never going to be "normal" again. After 4 weeks the dr said he wanted me to try Enbrel so I said ok. He said it'd take about 4 weeks to see any results. So I took it for 4 weeks and nothing happened. I despaired. But then by magic the fifth week the swelling was almost gone from my hands. And then the squishy tissue part that had been around my finger joints was gone. I could open bottles and cans again! And here just recently I found that I could carry my 10 gallon fish tank without barely a twinge and that I don't even need to take my tylenol every morning. It's been a miracle! I have had a few side effects that weren't fun. Constipation (hooray!), diarrhea (even better!), my hair is thinner and more fragile, and I get tired quickly...but all of these things and more I would have taken on a moments notice if it gave me myself back. And for that I'm truly grateful.

8/19/08 10:57pm

Emily, what a well-written, inspirational post. I have much to consider in my immediate future. I do believe that my options for RA meds and treatment may be fewer because of my previous health history (H-A plus four stents) but, your post was still uplifting to me. I would imagine for others also.

Thank you for taking the time to share your story. Carry on my dear.. Smile

 

~s.

Christine Miller, Health Guide
8/20/08 12:50pm

Yes, thank you for sharing your story.  I'm glad that you've found a medication that is working for you. It definitely reinforces my belief that positive attitude and perserverance will win out over the disease. 

 

I also try not to think about possible side effects of my medications.  I've been taking medication for RA for the past 30 years.  I've now gone through so many as my disease activity has fluctuated and drug availability has changed over the years that I just don't worry about it any more.  I figure that I haven't had any major health scares or side effects in 30 years, so I'm more likely to develop something from polluted Baltimore air or the pesticides and hormones in our food. :o)  Cest la vie.

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By Emily— Last Modified: 12/20/10, First Published: 08/19/08