Sunday, June 29, 2008

More interesting news

Is the Arthritis Painkiller Darvocet Really Dangerous?


Darvocet is a popular medication prescribed to relieve arthritis pain. Darvocet is a combination of acetaminophen and propoxyphene. According to Public Citizen, a National Non-Profit Public Interest Organization, "Darvocet, Darvon, and all medications that contain propoxyphene should be withdrawn from the market". The organization has actually sued the FDA because it failed to act on a petition submitted February 28, 2006. In that petition, Public Citizen stated that propoxyphene:

* is physically and psychologically addictive
* is no more effective than safer alternatives
* has been associated with more than 2,000 accidental deaths in the U.S. since 1981

Propoxyphene was one of the 25 most prescribed generic drugs last year. There were 22 million prescriptions for propoxyphene filled in 2007. According to Public Citizen, "A large proportion of the deaths from propoxyphene occurred because most of the drug is converted into a metabolite that is highly toxic to the heart, lasts longer in the body than the original compound and results in cardiac depression. Adverse cardiac events associated with propoxyphene include an interruption of heart transmission of electrical impulses, slowed heartbeats and a decreased ability of the heart to contract properly." Public Citizen’s book, “Worst Pills, Best Pills,” has listed propoxyphene as a DO NOT USE drug since its first edition in 1988. Public Citizen states in its complaint that darvocet is a relatively ineffective painkiller -- and the pain relief is comparable to ibuprofen.

-- end quote

I seem to be getting all the grim news about RA coming across my RSS feeder. I spent a lot of time on Darvocet when I was first diagnosed. I guess a 17 year old doesn't have to worry as much about cardiac arrest. Interesting news though.

Saturday, June 28, 2008

Rheumatoid Arthritis Drug Boosts Melanoma Incidence


FRIDAY, June 20 (HealthDay News) — Rheumatoid arthritis (RA) patients treated with methotrexate have an increased incidence of melanoma and other cancers, an Australian study says.

Methotrexate (MTX) is a disease-modifying anti-rheumatic drug (DMARD) commonly prescribed to RA patients. A link between the drug and cancer has been suggested, and there are even concerns that the drug itself may be carcinogenic, but research examining this concern has proven inconclusive.

his new study included 459 RA patients (309 women, 150 men) who started treatment with MTX prior to June 1986. During a total of 4,273 person-years of follow up (an average of 9.3 years per patient), 87 cancers were identified.

The researchers found that the RA patients who received MTX were 50 percent more likely than people in the general population to develop cancer of any kind. In terms of specific cancers, the RA patients had more than a fivefold increased risk of non-Hodgkin lymphoma, a threefold increased risk of melanoma, and almost a threefold increased risk of lung cancer.

The increased risk levels for non-Hodgkin lymphoma and lung cancer were similar to the findings of studies in Europe and in the United States. However, the increased risk for melanoma identified in this study was new.

I've been on methotrexate since 1995, just so you all know. I knew about the increased cancer risk, but five-fold??? threefold??? 50% more likely than the rest of the world?


Lately the systemic risks associated with RA have been troubling me, even more than the RA itself. I had a routine health screen done in Feb and the cholesterol and triglyceride rates were high. I was able to bring down the cholesterol by half-heartedly dieting but the triglycerides continue to rise. Good news is that my fasting blood sugar was okay both times and I've always had low blood pressure -- even with the provigil, my blood pressure has risen to normal. However, my resting heart rate is a little fast.

People with RA DIE of heart disease. This post from last year freaked me out: Rheumatoid Death Rates Remain Unchanged. This quote bothered me: Because of the relationship between inflammation and rheumatoid arthritis and inflammation and cardiovascular risk, that may mean that "no matter what we do, we can't lower their mortality rate," Lindsey said.

"no matter what we do" keeps going around in my head.

I'm on day 5 of the South Beach Diet. I want to kill something, cover it in chocolate, and eat it while drinking a Dr. Pepper. I don't plan to be strict forever and I feel so silly shopping with my book in my hand. I'm very frustrated with the South Beach Site -- they charge $5 a week to be a member (except right now I'm taking advantage of my free 7 days). The site focuses on weight loss. Frustrating -- I don't care what size my jeans are. Okay, I care, but enough to make me want to try roasted eggplant -- I kid you not, I roasted an eggplant today. This is coming from me, who thinks a vegetable is yucky and the food pyramid consists of pop tarts, Dr. Pepper, and Baby Ruth bars.

I want to see if I can keep myself from having a heart attack in my 40s, from being one of those people who die of RA and its complications. There's a weight tracker on the site. What about a cholesterol tracker? Blood sugar tracker? Any indication whatsoever that the web site is designed to help people be healthy? Nope.

Lately, all of the studies in cardiology show the link between C-Reactive Protein and heart disease. C-Reactive Protein is a measure of inflammation. My current (former?) rheumatologist uses it to measure my RA progression. (Other docs have used SED rates). I'm want to get my last bloodwork from May and then compare my C-Reactive Protein levels between then and now. If eating all of this green stuff doesn't actually lower the inflammation in my body, then I think that South Beach might be a vain hope to stave off odds that it can't hope to touch.

If that's the case, if I'm going down on this on this boat, I'm going down with a Baby Ruth and Dr. Pepper, not a mixed green salad and a Diet Rite.

Monday, June 9, 2008

Finding a doctor

When you have a chronic disease, finding a doctor is really like dating.

I'm taking this breakup from my rheumatologist sort of hard. It's an amicable divorce, but there's unfinished business. I'm transferring custody of my damaged joints, my high cholesterol, my medication lists, my lack of hypocretin, my confused immune system to someone I have not met, simply because my husband has a new job in a new state.

I will arrive with notes, records, X rays. Please do good for me, I will say, holding them up to a first year fellow in a teaching hospital.

Where is the or EHarmony for rheumatologists? I want to be matched on 22 levels of compatibility too. I want to know how this person feels about biologics, about prednisone, about whether or not he/she can prescribe provigil or if I have to find a neurologist too.

My relationships with rheumatologists has been a sordid history, full of high hopes and expectations and sometimes tears.

First, there was the internist, not really a rheumatologist, just the best we had nearby. He explained nothing to me, just kept giving me more and more disalcid until I couldn't walk, had an ulcer, and fainted in the shower on mornings. I remember my family doctor, the man who delivered me, seeing me about 3 months after he'd referred me. He was angry at how sick I was. He called a colleague in Kansas City, 2 hours away.

I limped into Dr. Layle's office.
He is the first of two doctors to have saved me. He looked at me, 16, 102 lbs, walking with "a pronounced waddle" according his letter, and started me that day on DMARDs. He also gave me a big ol' steroid shot, warning me that it would make me temporarily feel better, but not to over do it. I awoke the next day without pain, for the first time in months. I thought I was cured.

Every 1 - 6 months, all through college, I went to see Dr. Layle. I didn't drive at the time, so sometimes I went with friends, sometimes with my mom. My mom and I would laugh at the face he'd make when I told him about another crazy plan I had. Was it okay to take martial arts? "Lesleeeeee...." he'd grimace. What about getting my nose pierced? Was there a risk of infection? What about drinking beer on my 21st birthday? Could I do that with methotrexate? "Lesleeeeee....."

I left for AmeriCorps NCCC, 10 months of running, trailbuilding, sleeping in tents.
"Lesleeeeeee....." He retired to fight the managed care system, he said. He saw what was coming.

I saw his colleague through my AmeriCorps year. She returned to her hometown. By that time, there was a rheumatologist closer to home, so when I returned home, I saw him.

He wasn't bad but not great either. We maintained. We dated causally, if you will. Prednisone came into my life then on a regular basis. He did not worry about the side effects, although I should have. My time spent asleep, my weight levels, and other metabolic changes were sneaking up on me, although I wasn't alarmed. Didn't I run a marathon? Didn't I just do AmeriCorps? I was young and healthy.

Time to take on grad school. The first doctor I saw here charged me $800 for the initial visit. I was shocked. He never really talked to me, only got angry when I didn't do my labs. I totally understood that, I needed to do my labs, but I wanted to talk, to help figure out what was going on. He had 15 minutes scheduled per patient and damn if I was going to throw him off. I wanted a relationship, he wanted a hook-up.

To be fair, he was the first to think my sleep was not normal and suggested fibromyalgia. I spent my first years of grad school in a terrible muscle-relaxer induced haze. I thought it was fibro-fog. It was med-fog.

I finally was fed up with $800 for 15 minutes and taking 30 minutes to remember to put on my shoes in the morning.

I found my current rheumatologist, Dr. Sattia. We sometimes do not agree on things, although we both agree that I probably don't have fibromyalgia. When my sleep reached a crisis level and I was sobbing in his office to please help me, he said that my lab work was fine, so I should not be sleepy. He did not want to deal outside of his specialty area, he had told me that from the beginning, but I couldn't figure out what the hell was making me so tired. That was hard to forgive. Also was the two months spent in Europe where I walked all over Galway, upset and in pain, trying to find a strange doctor's office to get the bloodwork I needed so that Sattia would let me have a refill of my prednisone. I swore at him up and down the streets of Galway, and I still swear my synovial cysts developed then. What was three more weeks without bloodwork? What kind of doctor withholds medicine from a patient overseas? But that stubborness also makes him a good doctor, so I grumble and do what I need to do. I know that I am better monitored now that I've been in my whole life. He lets me research and make the decisions.

The refusal to treat the sleepiness drove me to Dr. Brown and the sleep clinic, and the diagnosis of narcolepsy, and most importantly, those beautiful little provigils that give me my life back. Dr. Sattia could have given them to me, but I never would have known what was causing my sleepiness.

And I've had a pretty steady relationship with Sattia. I trust his judgement. He didn't panic at the COX-2 news, just said he'd seen the studies and thought that I would be fine at the dose that I was taking. When I called the on-call doctor at 3 am with vomiting and not being able to stand up, they called him and he called back, saying to go to the emergency room. That was the third middle of the night call and he always calls back.

We're both ready for me to start biologics again, but he doesn't want me to be far away if a reaction happens, so he's holding off on the humira.

So, um, that's my history. I never minded going to the doctor about my RA -- in fact, I've sort of liked those moments where I can sit and talk to someone about all of this that I manage pretty quietly every day.

And now, I start again.
Rheumatologist needed: Must be familiar with RA in young adults, enjoy good conversation, be cautiously aggressive with treatment. Must be willing to listen to consult, provide information, be a good partner but let patient make own decisions. Long walks on the beach are out at this point, unless you want to help me find a scooter.