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Tuesday, January 7, 2014

My Rheumatoid Arthtritis Story - Part 2

My tri monthly visits to the rheumy lasted shorter than the time it took me to find a parking space in the lot. The longest time I spent in the clinic was waiting in the waiting room. My "Miss America" moniker disappeared, and any questions I asked him were always poo-pooed. "Don't you think my liver numbers are getting too high?" "They're a little elevated but nothing I would worry about. Think of it this way, even though the speed limit says 25mph you usually go over it, and that's okay." I hoped he didn't tell his newly-licensed daughter that!

I was getting concerned because at the very start of my diagnosis my liver levels were perfect. And keep in mind I've been a drinker my whole life as well as a Tylenol junkie. Those two elements were gone and another element had reared its head...high cholesterol. All of a sudden I had a problem with that, never thinking that maybe the MTX was contributing to it. My family physician put me on Fenofibrate which did bring the numbers way down, so I thought everything was okay. Meanwhile, the same family physician was giving my husband hell because of his liver levels which were half of what mine were! One doctor was reading him the riot act while another one was telling me not to worry about putting the pedal to the medal. I made a note to myself to bring my blood work to the next GP visit.

At the rheumy visits he would look at the blood results from three months ago. I couldn't grasp my head around that so after about a year and a half of looking at old numbers I began to ask him to let me take the blood work a week or so before my office visit so we could look at accurate numbers. He informed me that wasn't the way he did it. He had everything "scheduled" so that wouldn't work. I didn't want to argue so I let it go, for a little while. I did let him know I was still in pain so he told me to take Ibuprofren for it. I also told him that the MTX was wiping me out. I was so fatigued for two days after taking it that I was pretty much useless. He upped the Folic Acid to two pills every day and said that would counteract the tiredness. I told him I had added a bunch of vitamins to my regiment. He laughed and said if I wanted to waste my money that was my choice. Funny dental hygienist informed me that I should not take Ibuprofren with MTX as they interacted. I told the rheumy this and he said only if I use it "a lot." I told him I didn't want to use it at all and asked for something else. He prescribed Meloxican. When I got home I filled it, but before taking it, checked out Medscape's drug interaction site. Guess what? A serious interaction was found! So, no, I did not take it. Now I'm starting to really question my treatment, and have come to accept that there is nothing that I can take to relieve my pain.

On some visits he would squeeze my hands or knees and ask if it hurt. Ummm, yeah, when you squeeze them like that they certainly do hurt. But it was always a hit or miss thing. When he would ask me to gauge the level of discomfort on a scale of 1 to 10 I would say it doesn't work like that. "Today is a good day, I'm not in pain. If you would have seen me last weekend I was in pain. I notice it gets a lot worse with the weather changes." He said that wasn't the case. "The weather has no effect on you." "Umm, I think I know if it does or not, and believe me it does." He didn't believe me. He rarely, if ever and only when I asked him to, would listen to my lungs. I had read on-line that MTX could cause problems with the lungs so I thought that should be part of the routine exam. It wasn't.

And then fate stepped in. After a typical useless exam I had my blood drawn. When the results came in my rheumy who I had begun referring to as Dr. DoNothing happened to be on vacation so the head of the department looked at them. His nurse called and said my liver numbers were way too high and they wanted me to take a repeat test. When I looked at the numbers I laughed to myself as they had been way higher on other occasions. When the numbers came back high again Dr. DoNothing's nurse called and told me to drop the MTX to 5 pills per week instead of 6. I asked if he wanted to see me and she said no, not until the next office visit, 10 weeks away.

Meanwhile, my family doctor had taken me off the Fenofibrate because I showed him my liver numbers and relayed what Dr. DoNothing had said, "They could be be high because of the cholesterol medicine." After being off the cholesterol medicine for 6 months, my family doctor took more blood -- my liver levels were elevated and now my cholesterol was way up there again too. He told me to "watch my diet, avoid sugar, exercise, yada yada yada," but no more pills for now. I asked him what he thought about my treatments for RA, noting my poor numbers, my fatigue, and still painful existence, and he sort of deferred to the rheumy with a shrug of the shoulders as "he was the specialist, and they probably have a different threshold as to how high the levels should get." I told my family doctor I still was unable to sleep well so he prescribed the generic version of Flexeril. I began taking them and finally, finally, was able to sleep again. I also noticed I wasn't in as much pain throughout my muscles.

About two weeks prior to my next rheumy visit I decided I had enough of looking at old numbers and wanted to be able to talk to him face-to-face with current blood work numbers. I called the nurse and after leaving a couple of messages I finally spoke to her and told her I wanted them to put the order in. She said she would talk to the doctor. Well, long story short, and after a heated exchange with the nurse about how ridiculous this process was, he would not budge and refused to allow me to have my blood taken ahead of time. The day before I was to have my appointment I get a call from the office saying he was out of town for the next week and they needed to change my appointment. So much for his "schedule." Fine, I decided I would confront him then.

So I did. His stance was, once again, everything was according to schedule. I brought up how he cancelled my last appointment so the "schedule theory" is a farce. What difference would it make if I went one week prior, especially since many rheumatologists actually test their patients every 8 weeks, not 12 weeks like he does. "Well, there may be other tests I want you to take." "What other tests? It's the same routine every single time. If there are additional tests, I will pay the extra fee to take it." "Well if that's the case then you can come back here after the tests and we can go over them." "So, what you're saying is I should come in for my appointment, go give blood, and then when the results comes in pay another office visit to see you?" "Yes." "No, that's not how it should work. It should work how it works with my family doctor. I take the blood a week before seeing him and then during my visit we go over recent results." "I'm sorry you're not understanding me, that's not the way I do it." Now I'm boiling mad at this point and point out that the last results, read by the department head caused me to drop down on the MTX. How does he rectify that after all those other results where my liver numbers were even higher?

He ignores that statement and instead tells me I'm getting angry for no reason. I apologize and explain I'm Italian and from Brooklyn and if something is on my mind I'm going to let it out, do you understand me? So doctor let me ask you this, "What happened about putting the RA into remission?" He actually smirked and said, "Oh, that's never going to happen." I'm stunned, "You told me the first visit that by treating it aggressively we could put it into remission." "Oh, that's very rare." "So did you tell me that to just give me false hope?" "If you want to look at it that way." "Well, what other way is there? What would happen if I stopped taking the methotrexate?" "With not taking a biologic? You would become deformed, the disease would progress and you'd be in very bad pain. You really need to think about going on Enbrel." "Enbrel? Are you kidding me? You think I'm going to inject myself with a needle? I'd like you to run a test to see how bad the RA is and if it's improved." "Oh, it doesn't work like that." "What do you mean? Can't you get a number to see if the disease is progressing?" "No." "Well, how about taking more xrays. It's been over 3 years. Let's see if there's any more damage." "No, that's not necessary." "So what am I supposed to do?" "If I were you, I would begin taking Enbrel." "Those side effects are worse than the cure!" *Click here for a list of side effects which include Cancer.* "Don't pay attention to those side effects. They have to put that out there if even one person has it happen to them. Think about it and let me know what you want to do. See you in 12 weeks."

I know what I want to do. Never mind that. I know what I need to do...get another opinion. At this point I'm beginning to think Groucho would serve me better...Calling Dr. Marx, Calling Dr. Marx...

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