Monday, September 21, 2009

Holy Humira!

When the scans came back with tons of new stuff in my abdomen, I was a bit surprised. Not shocked, because there had been some problems. A few lesions were tested and did not show cancer. To be safe, half of the thyroid was removed and a monitoring regimen initiated. All that stuff seemed resolved, until now.

The saving grace for my particularly inveterate case of arthritis was Humira. There are side effects listed on the pamphlet that comes with the drug. You know, the one that is written in about font size 2 and is folded about 20 times so it looks small. When you open it, there's a complete compendium of potential problems. My doctor assured me, however, that she would never suggest anything that she had concerns about. I trust her. She's nice and caring. So, I agreed. Here comes the Humira.

Three months have lapsed and the arthritis has gotten worse. No cycles at all. Foot is permanently swollen and painful. Still have abdominal cramps. Have had bladder pain. Low back, mid back and neck are all very painful; every day now that I really think about it. And, the hip. I can barely walk some days. When I can walk, it's painful and any wobble, stretch or too much walking will set me back to square one--pain and needing help walking. So, the consequences are high. Humira has not helped, and maybe it's hurt.

My regular monitoring now reveals there is fluid, another lesion, a complex cyst, a bone lesion. What's that about? My doctor is really concerned with this and tells me to stop all my medications, including Humira. I do. I have no change in pain level but, boy, does my head feel quite a bit clearer. I still get to that zone where I'm restless and can't concentrate, but I have been able to think of some words this week without as much struggle as I had been having.

Nouns. Adjectives. They have once again become a part of my memory. When I want to describe something, I no longer have to say, "you know," "the thing with the," "um" -- you get the picture. Now I can call something brown--brown. Without struggling to find that word. So, that's a good thing. But, there's bad.

In my regular Internet searching, 'humira side effects' has been my most frequently used search phrase. It's shocking what people are saying in blogs and discussion boards. And, I should preface this with my general feeling about information I find on the Internet and in blogs. It's great fast access. It's great to use as a resource for opinion, lists of questions, etc. Some things are obviously better than others. Blogs are great, too, because people will spill it all. Generally, they're mad. So, you will read about all the bad things and never really have a reference to how many satisfied and happy patrons of a product (or cause) are not talking in the land of blog. So, I do try to keep my searching in an appropriate context.

Nevertheless, my searching led me to scary-land with discussion board entries such as "Humira killed my husband." Ok, what the ? Over and over, the complaints about Humira were scrolling down my screen. Most pointedly were the many entries I found suspecting a link between Humira use and lymphoma and/or MS. So, now I'm paranoid. I want to be in my rational mind and know that I'm only reading from those who have something and blame it on this drug. But, maybe I'm not.

After three months of use, I'm not better. And, now I have tons of stuff growing in my abdomen and can't walk normally any more. Coincidence? No clue. But, for now, my suspiciousness is keeping me away from it all until I figure out what's happening. I'll take the pain, as the consequence is just too high for me.

Bibliography
http://arthritis.about.com/cs/druggen/a/newdrugsafety.htm
http://www.bioportfolio.com/news/biotracker_74.htm
http://www.aboutlawsuits.com/fda-enbrel-humira-remicade-lymphoma-cancer-children-180/

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