The RA Community Is Big Enough For All Of Us

I recently posted the story about the death of 41-year-old reporter Emma Suddaby from RA.  The article has been making the rounds on social media that is related to the RA community. 

One of my Facebook friends, someone I went to elementary school with, but haven’t seen or talked to in person for probably 20 years, posted the following comment to the link on my Facebook page:

“I've had RA since I was 14 and have never heard of anyone dying because of it.  I get the infection risk, but this is an incredibly rare situation.  I'm sorry to hear she struggled so much and was in such discomfort.”

I never knew this person had RA, as by the time she was diagnosed, we were no longer in contact.  Even so, we have been Facebook friends for many years, and I still never had any inkling that we had this disease in common. 

This comment really horrified me.

To me, this comment reads more like it comes from someone who doesn’t have this disease and doesn’t believe it can be this bad, rather than coming from someone who is part of this community. 

To be honest, I am not really sure the purpose that this person’s comment serves, other than adding more fuel to my fire.  Or as a public declaration that this person has RA but it doesn’t really impact their life. 

But it doesn’t read to me as being realistic, and almost comes off as self-hating, or at the very least, in denial about the severity of this disease. 

There is already enough stigma surrounding this disease, especially when you are a young person, so to hear someone in our own community making comments like that is simply deplorable. 

Although while I am including this person in the RA community, it’s not clear whether or not she would consider herself to be a member.

I am taken back to a moment after I was first diagnosed, when I was receiving steroid infusions.  I was trying to get the nurse’s attention to make sure it was okay to listen to headphones.  I couldn’t get her attention, but the girl next to me, who was clearly receiving chemo, told me to go ahead, “You do what you have to do to get through it.”

I was so struck by that, because here she was, receiving chemo, and giving me advice, and making me feel like I was a member of the club.  And we didn’t have the same disease.  So if we can make connections like that with other people who don’t have our same illnesses, think about the relationships we can build with others who have RA.

But solid relationships won’t be built on comments like the one posted to my Facebook page.

The reality is, the RA community is big enough for all of us.    

If we all had RA super severe, we wouldn’t be able to help each other or offer each other hope, and if we all had RA super mild, we wouldn’t need each other.

To be honest, there are times when I’m doing relatively well that I don’t feel like I belong to this community.  But it’s not because people are unwelcoming.  It’s my own insecurities.

I know that I am doing a lot better than some people with RA.  But that’s never seemed to matter in terms of being considered a part of the group and vital member of this community.  And I am so grateful for that.     

This isn’t the first death I’ve heard of at the hands of RA, and unfortunately, it certainly won’t be the last.

When someone in our community dies, it should serve as a call to action.  It should make us more determined than ever to find new treatments and cures. 

It shouldn’t be used as an opportunity to create fractures and friction in the community.  It shouldn’t make us weaker, but it should make us stronger by bringing us together. 

The Methotrexate Shortage And Me

I’m sure by now most of you have heard about the shortage of Methotrexate. 

If you haven’t, I’ll try and get you up to speed.  So, the main issue is with the preservative-free form of MTX that is used mainly to treat children who have Acute Lymphoblastic Leukemia. 

Puts a whole new spin on saving the children. 

The reason that this ends up affecting the whole pot of MTX – in other words all of the injectable forms – is because one of the major suppliers had some serious quality control issues that have severely diminished what was already a diminishing supply. 

I’ve read some accounts about this crisis that have been infuriating because they are uninformed, both from reporters and from people with RA, themselves. 

Some of these accounts suggest that the Methotrexate shortage won’t affect people with RA because most people take it orally.  In fact, I think that is dead wrong.  When I was on it orally, I was in the minority.  Most of the people that I knew that were taking it, were taking the injectable form.

The company that manufactures my MTX is discontinuing the size vial I currently get, 25 mL, and will instead be making 10 mL vials, thus cutting their supply literally in half.

A lot of people have asked me if I will be affected by the shortage, and my answer is now yes and no.

Yes, if I continue to be on MTX, the shortage will most certainly affect me.  This is really frustrating because I’ve finally got self-injection down, feel like I’ve found a treatment that works, and there may be a chance that I will have to switch meds. 

But I will NOT go back on the oral form.  At the time, since I didn’t have a point of comparison, I thought I tolerated oral MTX pretty well.  However, now that I am on the injectable kind, I realize how awful I felt while I was on the oral, especially the day I took it. 

But unfortunately for me, this matter has become more complicated.  I had my every-three-month blood work on Friday.  And I received a call from my rheumatologist’s office on Monday, informing me that my liver levels have increased yet again – from just a few weeks ago when I had labs drawn for something else, and my rheum claimed it was because I still had a high concentration of MTX in my body from Wednesday as opposed to Friday – so I am off of MTX for the next two weeks.  Then I need to have the labs re-drawn, and we’ll go from there. 

So I’m not sure if I will get to stay on MTX, which is frustrating since I feel like it is working pretty well, and I hate making med switches. 

I’m not sure if the silver lining is that if I have to go off of MTX, I won’t have to worry about how the shortage will affect me any more.  But   

Apparently, currently, there are hundreds of drugs that are at risk of running out.  It’s simply an issue of supply and demand.  But maybe if the government worked harder at finding cures for diseases instead of having to rely on medications that ravage our bodies, none of us would be in the position to worry about things like this.

We have enough to worry about.  Life with chronic illness is complicated.  We shouldn’t have to worry that there won’t be enough of the drugs we need to stay alive.  

White Girls Don’t Get Lupus

Some people say that white men can’t jump.

And some people say that white women can’t get lupus.

But tell that to all of my fellow bloggers who have lupus…and are white…

I evidenced this myself firsthand in attending a lupus support group – in a predominantly white area – where I was the only white girl in attendance.

So there. It’s no secret that lupus has higher incidence rates in African Americans, Latinas, and Asians.

So why all of this talk about race all of a sudden?

Because, unless you live under a rock, you’ve probably heard that Benlysta – the first drug to specifically treat lupus in over 50 years – was approved yesterday by the Food and Drug Administration.

According to the most recent  New York Times article, “The drug is not recommended for patients whose disease is severely damaging their kidneys or central nervous systems because it was not tested on those patients. Moreover, African-Americans, who have a far higher incidence of lupus than white people, did not appear to respond to the drug.”

The approval of Benlysta could be a victory for us white girls with lupus. But it could also mean that those predominantly affected will not receive any benefit.

Will it be considered “off-label” for doctors to prescribe Benlysta to African Americans? Because the reality is, it hasn’t been approved for them.

Isn’t it disturbing to anyone else that the majority group who is most affected by this disease are the least likely to receive help from it? And is it really any surprise that a disease that affects primarily minority women has had such a difficult time gaining treatments?

Plus at a cost of $35,000 a year, I can’t imagine that patients are going to run in droves to their doctors, asking for this drug, especially considering that the findings from the trials have been relatively mixed.

I definitely think that this is a milestone to commemorate: the first drug for lupus in over 50 years. But, as always, I remain skeptical. No drug, no matter how good, is a miracle cure. There will always be side effects.

And it seems like, for a drug to treat lupus – that can’t treat African Americans, those with kidney involvement, and those with central nervous system involvement – who can it treat?

Oh yes, us run of the mill white girls, some of whose doctors don’t even believe they can actually have the disease.

(And please note the irony here: I’m probably one of few who would be able to take Benlysta. Also note that my position on Benlysta has always been the same.)

“Out, Damn’d Shot! Out, I Say!”

So I’m channeling Lady Macbeth here a bit. But notice that the title of this post says “shot” and not “spot.” You can probably tell where I’m going with this.

With the change in weather, I have been feeling pretty awful, like I’ve been put through the ringer, always under the weather – joint and muscle pain, headache, nausea, sensitivity to smell, sensitivity to fluorescent lights – I’ve got the perfect mix of lupus and rheumatoid arthritis going on right now. So I decided that before I “really” get sick, I should get my flu shot, which I did yesterday.

But I’ve been avoiding it, for obvious reasons.

It was this time a bit over a year ago that I got my pneumovax, and ended up in the hospital for four days with a cellulitis infection. Don’t recall? Read Adventures In The ER And The MPU.

Not that it means anything, but I did provide information to the Vaccine Adverse Events Reporting System about the incident. I didn’t hear anything, but a year later they sent me a form, asking if the patient had recovered or not. I did fill out the form, explaining that I had a reoccurrence of the original cellulitis infection, and that I suffered emotional trauma as a result of the experience.

Don’t believe me? I’ve been avoiding getting the flu shot like the plague. I have never been a fan of shots and needles, but after the events of the last few years, I’ve endured more needles than I ever thought I would see in my entire life.

But the thought of putting myself in the position of getting a life-threatening infection – while I’m trying to do something to protect my health – doesn’t really inspire me to go ahead with it. The whole pneumovax debacle may have been a fluky thing, but when something like that happens to you, it doesn’t matter what the odds are, it just sucks – and really tests your faith in the entire medical establishment.

I have a made a promise to myself never to have a shot administered at the student health center again – maybe this is irrational, but that’s the way it’s going to be. But can I really trust someone who works in occupational health? Have they versed themselves in the packaging material that comes with the vaccine before they give them or only after someone has a problem?

I also decided that I would get the shot early in the week, and not at the end of the week, like the pneumovax last year. That made it more difficult to do anything about it.

Now I really don’t want to get into a discussion here about the safety and efficacy of vaccinations in general. There are plenty of people who view all shots as bad and refuse to get any at all. That is your prerogative. It is mine, as I have done on a yearly basis since my freshman year of college (that was almost eight years ago already (and before I was chronically ill) – yikes!) – and especially since I became chronically ill – to make sure that I don’t die from the stupid flu. So please, no comments about how I’d be safer drinking Drano than getting a shot in the arm, or the like – unless you have personal experience that qualifies you to have such an opinion.

And speaking of safety, I’m sure you’ve all heard about the Methotrexate recall already. This definitely begs the safety question. My feeling about this, although I take the pill form of Methotrexate and not the injectable kind, is that I am safer taking this medication and the others in my regimen, than I am going untreated. That at least gives me some peace of mind. (And I’m saying that about the drug in general, not that I’d be safer taking a drug that is tainted with flakes of glass).

So I guess that’s my philosophy when it comes to the flu shot, too. I would rather know that I’ve done as much as I can do – which isn’t very much – to protect myself from getting sick than not and have to worry all the time.

Plus, because I volunteer at the hospital, everyone who is not vaccinated by December 1st has to wear a mask. And you all know how much I love doing that… So it’s not only in my best interest, but in the interest of the patients I come into contact with at the hospital.

I do realize, that, based on how little is understood about many immune-system related ailments, especially those that “flare,” that there is some question about whether to get vaccinated while flaring, or if vaccinations can cause flare symptoms. Whether or not you decide to immunize yourself is a personal choice, albeit not necessarily an easy one for those of us who are chronically ill.

Can I sleep a little easier knowing I got my flu shot? Not necessarily. But can I breathe a little easier and not cringe every time I am on the bus and someone hacks up a lung. Definitely. Doesn’t mean I won’t get sick. Winter is going to be a long road, just based on how I feel already. But it means that, in some small way, I did what I could to be a dutiful patient and protect myself, even just a little bit, from all of the disease-carrying vectors around me.

2009: The Year For Lupus

For all intents and purposes, 2009 seems to have been the year for lupus. There have been a lot of happenings surrounding the disease.

MJ – With the sudden and tragic passing of Michael Jackson, the King of Pop, questions surfaced about whether the singer suffered from lupus. I’m no medical expert, but based on what I’ve heard, I think that there’s a good possibility that he did have the disease. Keeping with this theme, I channeled my inner Michael, and went as him for Halloween (see pictures at beginning and end of this post).

“Lucy” – Julian Lennon and James Cook introduced the song, “Lucy,” which paid homage to the Lucy from the song, “Lucy in the Sky With Diamonds.” Lucy Vodden died of complications from lupus in September, at the age of 46.

What strikes me about this song is the fact that it’s about Lucy and her girlfriends. I think that, especially for women with lupus, this is empowering. It’s like, despite her illness, she was stilled loved.

I think that’s something that I forget sometimes. Sometimes I feel incredibly alone, like I have no one. But in reality, that’s not true. It’s really easy to focus on the places where support isn’t coming from; my program/department, men, the world in general, sometimes those closest to me. And it sucks! But this upbeat song puts things in a different perspective, even though it doesn’t explicitly talk about the disease.

In the music video, both Lennon and Cook are wearing the purple “Someone you know has lupus” bracelet.

You can find out more about the song here.

Benlysta – The first lupus drug in over fifty years made it into the news, suggesting that it may just be the next best thing. Here were my thoughts on it.

Me – For me, 2009 was more down than up. It began early on with the tragic death of my cousin, which sent me reeling. It continued with a search for answers about myself and others. There have been posts about love, dating, relationships, and babies. There was my first lupus hospitalization. There was the opportunity to travel, to talk about my illness experience, and to meet blogger friends.

Once again, my readers have come to my rescue. I’ve been overwhelmed by the comments that were left while I was away, and even though I may no longer get a chance to comment back to everyone, I want you all to know that I read your comments and they mean a lot to me.

Here’s to hoping that 2010 will be full of good things!

Worried About The Economy? Just Plain Worried?

For those who have been wondering, I have not forgotten about the economy (obviously!), I just have not felt much like talking about it (as a chronically ill graduate student without a steady income). But I have found some useful information when it comes to emotional health and the economy, see the following Health Day article, and worry in general, see “Why Worry”, on the Lupus Foundation Blog.

Lupus Featured In "Woman's Day" Magazine

Thanks to a chronic friend and frequent reader for pointing out that there is a short article about Lupus in the latest issue of “Woman’s Day” Magazine.

The online version, which you can read here, provides some concise, easy to understand answers about the basic questions about Lupus, which might be useful to family and friends who find this unpredictable autoimmune disease even more baffling than we do.

"Fat Tax"? What's Next?

I heard about this on CNN this morning and my ears perked up. Alabama wants to make people who are overweight and obese (according to their BMI) pay a monthly fee as an incentive to “get healthy”.

I’m not even going to bother posting a link to this because all you have to do is Google “fat tax” or “Alabama fat tax” and you’ll find a ton of articles on this.

Apparently this isn’t completely new news and information has been circulating on the Internet about it for several weeks.

So here’s my question… What’s next? A tax on being short? The bigger question… A tax on being chronically ill?

This whole thing presupposes that there is a real definition of what it means to be “healthy” or “normal”. Plus, as many who are chronically ill know, the pounds can pile on for various reasons (i.e. prednisone) and NOT go away, no matter how much diet or exercise (if you are able given your illness) is involved.

So, what do “y’all” think about this?

Just What We Need: Another Warning About Medication

If you are an immuno-suppressed person like I am, you are going to want to check out this article on http://www.healthday.com/. It warns of potentially lethal fungal infections that those of us who are on immunosuppressive drugs are at risk of contracting.

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In other news, hopefully I’ll have a real post coming at you soon…

Beware: Fruit Juice

Several of my medications come with the warning not to eat grapefruit while I’m on them.

According to this article on HealthDay.com, other fruits, such as oranges and apples, can effect the absorption of certain medications, as well.

The conclusion of the article?

Take meds with water to be on the safe side!

Article Suggests "One-Third of Uninsured Are Chronically Ill"

According to a HealthDay article, the combination of chronic illness and a lack of insurance is a ‘lethal’ one.

The article suggests that between 1997 and 2006, access to healthcare for the chronically ill got worse.

Only seven chronic conditions were examined, though, not including rheumatoid arthritis – which usually is - or lupus.

You can read the article in its entirety, here.

"FDA Experts Recommend Approval for Experimental Arthritis Drug"

From HealthDay Health Highlights:

“The experimental rheumatoid arthritis drug Actemra should be approved by the U.S. Food and Drug Administration, an expert panel advising the agency recommended Tuesday.

The advisors voted 10-1 in favor of approval, despite the drug’s serious side effects including possible infections, liver damage and cancer, the Associated Press reported. Last week, the FDA posted documents on its Web site that said Actemra appeared effective in treating moderate-to-severe RA, including symptoms such as disabling joint damage and pain.

RA differs from typical age-related arthritis, which involves wear and tear on the joints as people get older. In RA, by contrast, the body’s immune system actually attacks the joints. About 2.5 million Americans have the condition, and most people get it in early adulthood or middle age, the AP said.

While most arthritis medications are designed to relieve pain, Actemra is a genetically engineered drug that blocks a protein called IL-6, which has been linked to the body’s inflammatory response.

Actemra is made by Hoffman-La Roche Inc.

The full FDA generally follows the suggestions of its advisory panels, though it isn’t bound to do so.”

(http://healthday.com/Article.asp?AID=617911)

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Read also the recent blurbs on HealthDay about Actemra from July 25, July 26, and July 27.

In Memoriam: Randy Pausch, 1960-2008

Some said news...

As many of you know, I have been following the Randy Pausch story, and have posted about him several times.

Randy died today at his home in Virginia, at the age of 47 (from pancreatic cancer). More information can be found here.

There had not been any updates on his update site for more than a month.

Even though I only knew him from TV and reading his book, I really admired Randy, and hope that I am half as brave as he was in the face of great adversity.

I am not really sure what else to say about this right now. I just figured some of you may want to know.

"Drug Combo Improves Remission of Rheumatoid Arthritis: Those on methotrexate-etanercept therapy 3 times less likely to have to stop working"

WEDNESDAY, July 16 (HealthDay News) -- Patients with moderate-to-severe rheumatoid arthritis benefited from combining the drugs methotrexate and Enbrel (etanercept), new research found.

The combination improved both remission and radiographic non-progression rates within one year compared with the standard treatment of methotrexate alone.

Patients on this regimen were also more likely to stay employed, according to a study in the current issue of The Lancet. The study was funded by Wyeth, the maker of Enbrel.

According to the Arthritis Foundation, some 1.3 million Americans live with rheumatoid arthritis, thought to be an autoimmune disease. The disease involves inflammation of the joints which can lead to both pain and disability. There is no cure for the condition, although several drugs can provide relief.

More than 500 outpatients who had not previously tried methotrexate, a chemotherapy drug, were randomly selected to receive either methotrexate alone (with the dosage increasing regularly) or methotrexate plus 50 milligrams a week of Enbrel.

Half of the patients receiving both drugs went into remission, while 94 percent had a "good/moderate" response. Only 28 percent on methotrexate alone went into remission, according to the study.

And, those on the combination therapy were three times less likely to have to stop working, compared with those taking methotrexate alone, said the study authors, from the University of Leeds and Leeds Teaching Hospitals Trust in the United Kingdom.

Almost a quarter of patients who were working at the beginning of the trial and who were in the single-drug arm had to stop work by the end of one year, compared with only about 10 percent in the combination group.

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Here is yet another story touting Methotrexate. I think it is very interesting that none of the recent articles I have posted have mentioned the recent finding that Methotrexate has been implicated in causing (significantly) increased risks of Melanoma.

Believe me, I know that all of these drugs come with risks. I just find it really interesting that, that finding seems to fall below the radar.

It is also interesting that the sponsor of the study is the pharmaceutical company that makes Enbrel. I guess I shouldn’t be all that surprised.

Trouble With The HPV Vaccine - Do You Really Want To Be "One Less"

I’m sure most, if not all of you, have heard something about this from somewhere. It’s been all over the news in recent weeks.

Apparently there have been over 8,000 adverse reactions to the vaccine, including Guillain-Barre Syndrome, which is an autoimmune disease.

Here is a recent article about adverse reactions to the vaccine from CNN.

You can also find information about adverse reactions to Gardasil from a report by the National Vaccine Information Center here.

Or you can Google HPV vaccine or adverse reactions to HPV vaccine, or some similar combination of terms, and find plenty of information.

To my knowledge, the first adverse reaction the news reported was that some people getting the vaccine nearly fainted and that many said the vaccine was rather painful.

Well, when I got my first HPV shot in October, I had an adverse reaction. A few minutes after I received the injection, I got dizzy and my legs went numb. I had never had a reaction like that to a shot before. Luckily for me, after about a half hour of lying on an exam table, I did feel a little better and was able to leave the facility where I received the shot.

Prior to this, since I was having other health issues, I confirmed with the two doctors I was seeing at the time that it would be okay for me to get the vaccine. I also confirmed this with all of my doctors before receiving the other two, which I had no reaction to.

And as for the pain, in my mind, it was the most painful of any vaccine I’ve ever had, including those protecting against tetanus and meningitis.

I know that some of the reactions have come from girls and women who were younger or older than the recommended age range. However, I’m sure there have been fair amounts from people who fell into the age range and thought that they were doing themselves good by getting the vaccine.

So I guess the question is, do you want to be “one less” person to get the vaccine?

Paying For Your Chronic Illness At The Cash Register

I heard a very interesting story today on CNN, which as far as I can tell was taken from an article from http://www.businessweek.com/ (magazine).

The article, entitled, “Your Lifestyle May Hurt Your Credit Score,” can be read here.

The article states that some credit card companies are limiting credit lines based on purchases (i.e. where you spend your money) – marriage counselor, bar, massage parlor – to name a few.

Another article on the same topic from the Washington Independent states that credit card companies are trying to penalize people for going “morally astray.”

The article doesn’t go into more detail about what other kinds of purchases are being penalized, but imagine how quickly my mind went from marriage counselors to chronic illness and the related topic of medical expenses. I, for one, always try to pay for prescriptions (I get these from a hospital pharmacy, not a regular drugstore) and appointment fees by check because I find them easier to keep track of.

In other words, I don’t know how these things would show up on a credit card statement…

But what’s preventing credit card companies from seeing medical expenses and decreasing your credit score. If a person who drinks socially or enjoys massage is a credit liability, certainly a person with a chronic illness is. With this line of reasoning, chronically ill people probably have more expenses and are not as easily able to pay their bills and, who is going to pay your bills if you are, for whatever reason, unable to do so?

And let’s not forget that there are a lot of stigmatized illnesses out there. Plus, many people with chronic illness find such things as massage, acupuncture, and other similar things therapeutic. Plus, a lot of people with chronic illnesses seek help from therapists for a variety of purposes.

So, why do I think this is timely? As we all get ready to celebrate Independence Day, I’ve been thinking a lot about independence, more generally. I think a lot of times chronically ill people feel like they are dependent on others and would prefer not to be. Or they feel, often unnecessarily, like they are a burden to others.

Another issue that chronically ill people face is disclosure. Who do they tell about their illness? How and when do they tell and what do they say? To me, this measure would force disclosure on chronically ill people. It’s often hard enough to disclose your illness to the people you are close to, let alone complete strangers.

Plus I think it’s pretty interesting that credit card companies, who prey on people’s vulnerabilities, think that they are good judges of what is “morally” proper.

This whole credit card thing puts a whole new spin on personal freedom, doesn’t it?

"Rheumatoid Arthritis Treatment Guidelines Updated: New rules called 'extensive' but not meant to crowd physicians' clinical judgment"

THURSDAY, June 26 (HealthDay News) -- “New recommendations for the use of disease-modifying anti-rheumatic drugs (DMARDs) in the treatment of rheumatoid arthritis (RA) have been developed by the American College of Rheumatology.

The recommendations on the use of non-biologic and biologic DMARDs in RA address five key areas: indications for use; monitoring for side effects; assessing clinical response; screening for tuberculosis (a risk factor associated with biologic DMARDs); and under certain circumstances (i.e. high disease activity) the roles of cost and patient preference in choosing biologic agents.

The recommendations, published in the June issue of the journal Arthritis Care & Research, also take into account RA disease duration, disease severity, and prognostic features.

‘These recommendations were developed for specialist clinicians familiar with assessing RA disease activity and disease severity,’ project co-leader Dr. Kenneth Saag, professor of medicine and epidemiology at the University of Alabama at Birmingham, said in a prepared statement.

‘Applying these recommendations to clinical practice requires individualized patient assessment and clinical decision-making. The recommendations developed are not intended to be used in a ‘cookbook’ or prescriptive manner or to limit a physician's clinical judgment, but rather to provide guidance based on clinical evidence and expert panel input,’ Saag said.

The recommendations include:
- Methotrexate or leflunomide therapy is recommended for most RA patients.
- Methotrexate plus hydroxychloroquine is endorsed for patients with moderate to high disease activity.
- The triple DMARD combination of methotrexate plus hydroxychloroquine plus sulfasalazine for patients with poor prognostic features and moderate to high levels of disease activity.
- Prescribing anti-TNF agents -- etanercept, infliximab, or adalimumab -- along with methotrexate in early RA (less than 3 months) only for patients with high disease activity who had never received DMARDs. In intermediate- and longer-duration RA, anti-TNF agents are recommended for patients who had failed to respond adequately to methotrexate therapy.
- Reserving the fusion protein abatacept and the B-cell antibody rituximab for patients with at least moderate disease activity and poor disease prognosis for whom methotrexate in combination with or sequential administration of other nonbiologic DMARDs led to an inadequate response.
- Avoiding the initiation or resumption of treatment with methotrexate, leflunomide, or biologic agents for patients with active bacterial infection, active herpes-zoster viral infection, active or latent tuberculosis, or acute or chronic hepatitis B or C.
- Not prescribing anti-TNF agents to patients with a history of heart failure, with a history of lymphoma, or with multiple sclerosis or demyelinating disorders.
- Avoiding the initiation or resumption of methotrexate, leflunomide, or minocycline for RA patients planning for pregnancy and throughout the duration of pregnancy and breastfeeding.

‘These recommendations are extensive but not comprehensive, and it is intended that they will be regularly updated to reflect the rapidly growing scientific evidence in this area along with changing practice patterns in rheumatology,’ Saag said.”

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Sorry if this is old news to some of you, but it was new news to me. What I find particularly interesting about this article is the predominant use of methotrexate given the article I posted about it last week. The article from last week can be read here.

"Rheumatoid Arthritis Drug Boosts Melanoma Incidence: Patients treated with methotrexate had a threefold increased risk of disease, report says"

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.

This 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.

'This study is, to our knowledge, the first to report an increased risk of melanoma in patients with RA treated with MTX compared with the general population,' lead author Dr. Rachelle Buchbinder said in a prepared statement.

'Futher investigation is needed to determine whether this risk is unique to Australia and what role MTX, immunosuppression per se, and/or environmental factors such as exposure to UV radiation play in its development,' she said. 'Our findings, taken together with other studies investigating the risk of skin cancer in patients with RA, may support a role for regular skin cancer screening for all patients with RA, particularly those receiving immunosuppressive therapy.'"

The study was published in the June issue of the journal Arthritis Care & Research.

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I know that some of you have been on Methotrexate. At my last rheumatologist appointment (Doctor C), the next step drugs of choice were Methotrexate or CellCept. As many of you know, I am currently on CellCept, Hydroxychloquine, and Prednisone. Based on what I have read, I am not sure that any of these drugs come without at least some risk, but I wanted to post this story, anyway...

Genetic Non-Discrimination Act

About a week and a half ago, President Bush signed the Genetic Non-Discrimination Act.

You can read about it here:

http://www.medicalnewstoday.com/articles/108399.php

The reason I bring this up is because several people (not doctors) have suggested that I undergo genetic testing, since it is suspected that autoimmune diseases are highly connected to our genes.
Amongst other things, the law protects against discrimination in insurance and employment based on your genetic makeup, should you decide to find out about it. So, with those factors taken out of the equation, why not do it?

It’s just one of many things that I’m not sure about lately.

Is it a necessity or a necessary evil?

The problem is that even if the veil of discrimination is lifted, there is still the fact that I may find out things that I don’t want to know about and have no control over.

Just like the discussion of whether my sister should be tested for the illnesses that I have, is this a prophylactic measure or a stupid one? Won’t it cause more worry than it’s worth? And since science hasn’t perfected itself to the point of absolute certainty, what do the results tell us anyway?

I’d be happy to hear from people that know more about the issue, as I don’t know too much about it. What are the pros and cons? And do we really want to know?

Rehabilitation Institute of Chicago Pain Boot Camp

So, I don't know if any of you have heard about this, but it has been all over the news and is particularly exciting to me.

I've been looking for a personal trainer or someone to work with who will help me get back into shape, but make sure that I don't hurt myself in the process. This hasn't been an easy search and I have pretty much ended it to no avail.

However, there is this great program at the Rehabilitation Institute of Chicago that specializes in working with people who have chronic pain. It’s month-long, intense program that helps people build strength they have lost due to chronic illness and pain.

More information about the Rehabilitation Institute can be found here:

http://www.ric.org/

And information about the Pain Boot Camp can be found here:

http://www.abcnews.go.com/Health/PainManagement/wireStory?id=4460590

http://www.cnn.com/2008/HEALTH/conditions/04/28/pain.boot.camp/index.html

Since I’m not in the kind of pain that I was before, this isn’t something I would do in the near future, but is definitely something I would keep in mind, should the need arise.

By the way, does anyone know of anyone in the area who works with people with chronic illnesses in terms of exercise and personal training?