Thursday, August 13, 2015

I TOLD You I was sick!

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So, I went to the doctor today for my 3 month follow-up. The doctor had emailed me that my white count is down. If you're unfamiliar with how your immune system works, you white counts is like an army. When an invader (infection) attacks your system, this little army comes out with guns blazing and attacks the invader and in a healthy person, destroys it. Until 20 years ago, I never got very sick.

In a person who has Rheumatoid arthritis it isn't that simple. They give you drugs that are used to fight cancer to suppress your immune system.  Sometimes these drugs actually make you sick. For example, they can cause decreased white counts. You can get sick with an infection and there are not enough of those soldiers to fight the invader. You can actually get cancer and other deadly illnesses without those little white soldiers. I've never had a low white count in my life.

So, I have to go back in four weeks for more lab work to see if there have been any enlistments. If there aren't and it is the same or worse, they will stop my RA meds.They have to or I could end up in serious trouble.

Admittedly, she said it wasn't very bad but her face told me she wasn't happy with it. Stopping the meds is not a good thing. Within two days it will be very ugly at my house.

Solution? The white count goes back up and I can continue as before. The white count stays the same or worsens and I am introduced to a new med. Arava. This medicine is not something I've wanted to take. She doesn't want me to take it, hence the unhappy look on her face. If the troops are still AWOL, we have no choice.

Arava stays in your system longer than methotrexate. If I have a reaction to Arava, I will have to be given another medicine to clear my system and it possibly won't completely clear me. It can stay in my system up to two years. Side effects can be long term and fatal.

That's where we are now. Although I don't want to take the metho.... a bald head is better than dead. The next step for me, if I don't take Arava, would be biologicals and they definately don't like giving that out. Reactions to biologicals are most certainly life threatening. Humira & Enbrel are the two choices.

I don't know what to do. I've prayed for a medicine that would work. Plaquanil worked for me for over 10 years, until I got the Epstein Barr virus. That wrecked my immune system. Plaquanil hasn't worked since. I now take both Plaquanil and methotrexate. Neither has worked sufficiently. I've gone from taking the initial 4 - 1mg pills of metho. to 8 - 1mg pills. She wanted me on 10mg injections and I insisted that doses be raised incrementally until I reached a level that worked. My caution is probably a good thing if the metho has caused the white count problem. I think she was relieved today. She said she was glad I wasn't on the higher dose.


My doctor did try to encourage me. She talked about how the medicines were necessary because it wasn't just my joints that were being affected. RA is a systemic disease. You may think it only affects the joints and cripples a person. You see it as twisted hands and crippled feet. It doesn't affect just joints. It affects heart, lungs, liver, and all tissue. Some days, my skin hurts. I have knots beneath the skin on my thighs the size of what we used to call logger head marbles. Think walnuts. They don't go away and sometimes they hurt. I get rashes that itch and take a long time to heal. My eyes get dry and itch and I can hardly see. My mouth gets so dry my tongue sticks to the roof of my mouth. I get mouth sores. I get up and my finger joints feel mushy and hurt. My feet feel as if I'm walking on railroad gravel. My knees don't want to work. My hips lock. I hurt in every conceivable place.

So, that is what I'm dealing with on a daily basis. Add the deadly medicines and it makes for a nice invasion. And now the army is in retreat.

I guess I'm asking for you to pray for me. I need a medicine that will work and not kill me. If the other medicine will work better than what I'm taking and won't make me sicker in other ways, I need to do that. Of course, I would love a complete remission. But I no longer know how to pray. I will be honest. I've prayed all the prayers anyone could possibly pray and that I know to pray. I'm now worse off than I've ever been since I was diagnosed. The patches are now potentially worse than the disease.




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