Wednesday, November 17, 2010

RA update ...

I had an appointment with my rheumatologist, who I shall call Dr. Pretend to Listen, scheduled for October, but I was having quite a bit more pain so they were able to fit me in early. I had typed up a whole page of notes detailing all of the new issues I have been having, such as pain in my hips. She casually glanced at it and then stuffed it into my file. She asked a couple of questions, but I could basically tell that she had already decided what she wanted to do, which was prescribing methotrexate. She did not explain the drug at all. Instead she relied on a piece of paper detailing the side effects of mtx, which frankly just scared the shit out of me. I did try to voice my concerns and ask more questions, but as far as she was concerned the appointment was over.

I went home feeling defeated and scared of my new prescription. I could not help but question whether I was at the point where I needed to take such a serious drug, but the doctor knows best, right? I tried to read as much as I could about mtx and plan for the possible side effects the best I could, which I detailed in previous posts. But honestly all I managed to do was freak myself out even more.

I took my first dose just before bed on a Saturday night. I woke up a hour later with my heart pounding and progressed into a full blown panic attack. I could not help but wonder if I made myself vomit, could I get the poison I had taken out of my system? And I did try, but I was not able to throw up. Eventually the anxiety wore me out and I fell back to sleep.

I slept a lot on Sunday, but felt descent and actually thought maybe the side effects would not be too bad for me. Then I woke up on Monday and realized that I was very wrong. I was sick to my stomach, my whole body hurt, and I wanted to crawl back into bed. I continued to feel that way the rest of the week and by Friday I had also come down with the flu. I called Dr. Pretend to Listen and she advised me to skip a week of the mtx so I could get over the illness.

Luckily I was on vacation the next week while my parents were in town because I still felt horrible. I did not want to eat anything but felt sick if I did not. I had a fever and felt like I was on fire if I exerted any energy at all. It was definitely a good time to have my mom around.

About three weeks passed before I felt “normal” again. The worst part is that I know the anxiety added to my reaction to the mtx. But who was supposed to calm my fears about taking it? My doctor sure did not care.

So I set out to find a new rheumy and searched the internet for any information I could on the doctors in the area that accepted my insurance. I finally chose one, I will call him Dr. Zen, and made an appointment. I asked my mom to go with me since she was still in town and I wanted someone to “have my back”. We walked into the small waiting room and were greeted by a lovely receptionist who was hanging up Halloween decorations. I took this as a good sign, not just because I love Halloween, but because it made everything seem lighter. After a short wait, they lead me into an examination room and within about five minutes the physician’s assistant came in. She had a motherly quality about her and I felt very comfortable speaking with her. When I told her about the mtx, she told me that there are negative side effects, but how widely used and effective it is. She explained that she had previously worked in pediatric rheumatology and knew plenty of children that had taken mtx. But she also let me know that there were other options out there. I felt so grateful for finding someone who not only explained things, but was also positive. If I did have to take mtx again, speaking with her would definitely make me feel more confident about it. She went to speak with Dr. Zen and they came right back in the room. He agreed with me that I was not quite at the point to take mtx and wanted me to continue on the plaquenil for right now. He explained everything to me and asked if I had any questions.

And I knew that I had found my new rheumy.

I have another appointment with Dr. Zen tomorrow for routine stuff, but I also have had a lot of shoulder and neck pain that I would like to talk to him about. Plus the air conditioning at work is bothering my hands and feet more and more.

It is definitely a good feeling not dreading seeing my doctor like I did with Dr. Pretend to Listen.

1 comment:

Tammy said...

I have been on the plaquenil for almost 16 months. It helps very little. But, it does help, a LITTLE. I tried the arava for four months until my next appt with Dr. L. He says, Tammy, when you have this many side effects -call me. Well I didn't because to be honest, which ones are the disease and which ones are the meds. BUT, stop I did as they were brutal. MY inflammation is 4x's higher than it should be so Metho was next. I had tried once before but within 24 hours shot up to a 103 fever, malaise, dilirum (sp) and not good side effects from the gastro point of things. I was immediately pulled.

Fast forward 4 more months. I'm in horrible pain, 5x's the inflammation and sick, weak, tired, fatigue, confusion etc. I'm just hurting.

Started metho again last sunday. I'm 4 days in and doing okay. I'm very tired, well okay, REALLY REALLY tired. But, the stomach cramps aren't too bad this time. My swelling in the hands and knees is going down. Slowly but going down. I feel somewhat more clear headed. I do have some dizzy spells, fainted twice. But, all in all. doing okay.

Soooooo... hang in there okay. If it doesn't work, try something else. If you need a medication buddy, I'm your gal. MY hubs reads the info. I no longer read it or I wouldn't try anything. Yikes.

Hugs
Tammy