Jan.5, 2011

I have had a headache for 7 days now. It started the day after my last remicade infusion. My hands and feet have been swelling and then going down and then swelling again. I have had many dizzy spells/episodes too. A fellow RA Warrior suggested that I check my blood pressure on Sunday (Jan.2). I went to Rite Aid and put my arm in the cuff. The first reading was 168/132. I think my eyes popped out of my head! I took it again. This time it was 135/102 (or something like that). I went home and tried putting all the pieces together. After I put Marissa to bed, I went to the ER.

The ER Dr was very non chalant about my condition. He said it was all due to the Remicade. He gave me a pain medication and an anti-inflammatory (which lowered my bp temporarily). And did a head ct scan. The head ct scan came back normal and they sent me home. They advised me to call my family dr the following day.

The next morning (Monday) I went back into Rite Aid and took my bp again. It was still 135/102. I immediately called my family Dr.  Spoke to the nurse. She was concerned with my symptoms too. She thought it was maybe from the remicade as well. She advised me to call my RA Dr, and call her back after I spoke to my RA Dr.

 I left a message with the nurse to have the RA Dr call me back (this was at 9:30am) . I advised her of my symptoms- all of them. The Medical Assistant for the RA Dr didn't call me back till 5pm. The MA only addressed my headache. Told me to take Tylenol. She didn't address my high bp, dizzy spells or swelling hands/feet. I was LIVID. I asked the MA "Did she say ANYTHING about my high bp, dizzy spells or swelling or did she completely ignore those symptoms?" The MA said there were no notes about those at all. She said to call back in the morning and make an appt, and to stop the Remicade. (Which btw- I don't give myself remicade. I get those infusions at the Dr office.)  So my headache, dizzy spells continue...as the world turns...

Tuesday...I called the RA dr back and requested an appt for this afternoon (Tuesday afternoon). I had been racking my brain all morning trying to figure out how to deal with this appt. I knew that "going off" on her wouldn't get me anywhere but I was LIVID. So, when I got there, they took my bp- now it was 148/110. WONDER. WHY!!!???  When she comes in the room, she says "sounds like Remicade is not agreeing with you". I said "there's a couple of things not agreeing with me". I started to go into my high bp, dizzy spells and swelling and what do you think she did? SHE TALKED OVER ME!! She didn't listen. She didn't even hear the high blood pressure till later when I REPEATED MYSELF!!! GRR..

She then said "blood pressure is not in my realm. Remicade should not make your bp go up. I'm perplexed. You've always had good blood pressure. Its not the steroid doing it because it would have done it a long time ago." (I have been on prednisone since July. and now I'm on the lowest dose I've been on- 12.5mgs/day)  "Oh and for the headaches, take your Tramadol if the tylenol isn't working."- she said.

Then she said "You should see your primary Dr about your blood pressure, I can't do anything."
Then I asked for a copy of all my medical records from her. She asked "would you like a certain part?" I said- "No, all of them. I'm making a copy for myself at home". When in all reality- she just lost herself a patient. I'm going to the Cleveland Clinic. I'm sure they are competent Dr's, seeing that they are ranked #2 in the nation.

So, here I am, taking Tramadol for a headache. I took THREE Tramadol last night and it didn't work. My head was and still is throbbing. I just called my family Dr and they can't get me in till tomorrow at 4:30. They advised that I go back to the ER or an urgent care so I can get some pain relief.

It's always something! Where are my boxing gloves??