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Christine on the many frustrations JA parents face

Balancing fear of a new medication against the hope it might work.

Don't Give Up

Balancing fear of a new medication against the hope it might work.

Between the NY Times article about a three-year-old boy who was diagnosed with juvenile idiopathic arthritis (‘The Boy With The Thorn In His Joints’) and the Dr. Oz television program featuring the boy and his mother who is a reporter and wrote this story for the newspaper, much has been said about the fear and hope of medications vs. holistic approaches to treating disease. I always make it personal. How does it affect Rheumatoid Arthritis?

After I watched the program I reached out to several leading rheumatologists around the country to get their thoughts on this idea that diet can cure Juvenile Arthritis, or any arthritis for that matter. They all came back with pretty much the same response. Alternative methods should not replace current medicines and therapy. Using any alternative methods in addition to medications is up to the person, but alone? A BIG question mark.

JA moms and RA patients are writing the Dr. Oz show. They are upset and I can understand why. Everyone who deals with this chronic disease knows that the key is to halt damage. Damage to the joints and the organs. Damage that is irreversible. They are shocked with this “one shoe fits all” media approach to a severe disease.

One of the most frustrating things I hear over and over from JA parents is the frustration of misdiagnosis and late diagnosis. Doctors who say “Don’t worry, your little one will walk when he’s ready” in response to the question “Why is my child not able to walk yet?” Or insurance companies make doctors start with the older, weaker medications and work their way up to the newer biologics because of the cost, meanwhile losing valuable time in controlling the disease.  And one of the most common obstacles is there are no pediatric rheumatologists anywhere near where people live. All of these roadblocks hinder the prevention of damage. They hamper the process.  That takes us back to Damage is Irreversible. Fruits, vegetables and nuts will not halt damage. Wearing copper bracelets will not halt damage. Even a positive attitude will not halt damage. Not with this severe disease.

Of course parents are fearful of giving strong, often toxic medications to their JA children. Sure RA patients are fearful of taking these medications. Offered a diet vs. an injection we would all choose diet. But I don’t see that as the alternative. Not at all. I see it as an addition.

I have been on every medication and every combination of medicines when  RA was running wild in my body. My doctor would control one aspect and then another issue would pop up. It was as if the disease was one step ahead of me at all times. After seven years of little relief due to either the complications of the medicine or the lack of its control over RA, I became eligible for a research program.

Was I fearful? Yes, but something took over that was more powerful than fear and that was hope. I had lost all hope because nothing had worked.  My doctor held out the coming research program as the carrot to dangle before me to keep me going. And then one day I got the call. The first biologic medication is ready for patient testing. Hope. It was right in front of me, waiting for my body’s responses. Hope, unknown, yes, only the rats had proven it effective. And now I would be the extension of the rat. I would be phase II in the research for the public.

The hope far outweighed the fear. The injections were scary. I never liked shots, much less injecting myself twice weekly. And every week when I would go back to the research lab I had to sign papers. Disclaimers. This lady had died of a heart attack. This man developed cancer. Three people across the U.S. had bailed out of the program due to side effects. And on and on it went for weeks, then months. The side effects on others. The rational side of my brain said of course these side effects could have happened to these people without taking the research drug. The emotional side of my brain said, when is it going to happen to me?

So yes, I understand the fear of people trying new medications especially giving children the same medications that adults take only in smaller dosages. Many medications that don’t have any long history….yet. I totally understand that and have great empathy.

But I also have great hope. When nothing else works we can’t give up. We have to keep moving forward. Trying the new medications. Trying the unknown.

I have been down that road, and while it is fearful, it is also hopeful. Would I want to give my children these medications? Yes, because it offers them hope when nothing else works. I don’t like to see children cry over shots. But even worse is seeing them cry over trying to walk, ride a bike, play ball, cheerlead or dance. I would want anything that could give them a childhood, an adulthood, a life. It is often a long, discouraging road to finding a drug to halt the damage, the pain, the disease. But from my personal experiences it is a road worth taking.

 

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