Nov. 23, 2010

I have waited a day to write this in hopes that i would cool off, calm down, whatever you want to call it... so here it goes.

Went to the RA dr yesterday. Had a list of 10 questions to ask... I wil keep my comments till after the Q&A.

1) Why am I always hot? Sweating all the time, sleeping, eating, sitting.. I'm sweating.
    DR. I don't know. could be your prednisone

2) Will I always be in some sort of pain?
    DR. Yes. a good reaction to RA medication is 50-70% pain reduction.

3) This past Saturday, I pulled out three handfuls of hair. Could this be a side effect of methotrexate?
    DR. Yes.

4) My methotrexate injection sights are remaining as red bumps, weeks after the injection.
    DR. (examined the spots) They do not look like an allergic reaction. You may want to take benedryl before the  
       injection, or try an ice cube on the area.

5)I think I've had RA for a lot longer than we originally thought (told her about when I was 22). Should we do a bone density scan?
     DR. YES. AND seeing that you have been on prednisone for so long, we want to check for that reason too.

6) Why am I so moody?
  DR.  Prednisone is known to do that. Once we start getting to lower doses, you should see a difference. It could also be the fact that you are trying to deal with a life changing event here.

7) My hands are very tight. They feel like they are curling up. Why?
   DR. This is a concern. You are on such a high dose of prednisone that this should not be happening. Once the prednisone is gone, you will be in a lot of pain. The methotrexate is not working as good as it should. We will need to start you on Remicade. Call your insurance and make sure they will cover it. I will give you a pamphlet on the medication. This is decision time Tonya. Do we make this jump? I think we should. But you are the one living with the pain.

8) I still can't sleep without sleeping pills. Why?
   DR. The prednisone may be at fault here, or you may have a sleep problem. Once we go lower on your prednisone dose, we will see how it goes.

9) I am losing my voice for no reason. Any suggestions as to why? I've read that you have joints in your voice box. could these be affected by the RA?
  DR. No, you can ask your family dr about that.

10) Can you check my lungs and make sure I'm breathing ok? I seemed to have had an asthma attack the other day.
   DR. You sound clear. Check with  your family dr about that.

So ?.. if i'm only expecting 50-70% pain reduction, why am i taking all these medications that could really do some major damage? People have asked that... I have asked that... and here's my answer. If you would have seen me back in July, or felt the pain that i felt when i had to go down the steps on my butt... you would understand why. If I don't treat this, I can guarantee I will be in a wheel chair before long. I want to play with my kids in the back yard. I want to be able to ride bikes with them, go trick or treating with them, go to disney with them. And I will.

I'm def not fond of being on a biologic. The "WHAT IFS" are scary in themselves. A good friend of mine contracted a brain virus from a biologic! It almost killed her. She is now doing blood transfusions to get the virus out of her system. I know that is a rare case... but its awfully close to home and it scares me.


The bone density scan is scheduled for Dec. 1 at 10:45 am, it will take approx an hour. I will prob start the remicade on that day too. Its a 2 hour IV transfusion, every 8 weeks (unless needed more or less, but every 8 weeks is pretty normal).

Yesterday when I left the dr office, I called the ins company to make sure the drug was covered (the cost of remicade is $1000 per vial). It has to go through prior authorization. I tried to handle this logically, and then the fear set in. I'm adding another drug to my body. This disease is further along that we all had guessed. Then i started to cry. I don't know why I cried. I know i have been able to handle anything that has come my way. I'm an overachiever. But i think the fear of the unknown still has a grasp on me.

One thing I do know, is that I'm a fighter, and I'm not going down without a fight.
t