Line to get H1N1 shot yesterday
Saturday, November 14, 2009
Saturday, October 24, 2009
Antimalarial Drug Prevents Diabetes In Arthritis Patients, Study Suggests
This study is about a year old, and it confirms earlier studies.
I also find this reassuring now that I've started plaquenil again.
From Science News Daily, yet another good secondary source for reviewing and interpreting peer-reviewed research:
Antimalarial Drug Prevents Diabetes In Arthritis Patients, Study Suggests
ScienceDaily (Oct. 31, 2008) — The use of an antimalarial medication may prevent the onset of diabetes in patients with rheumatoid arthritis, new Geisinger research shows.
Researchers examined the records of 2,093 Geisinger patients who received treatment for rheumatoid arthritis from 2000 to 2008. The study looked at, among other things, use of the medication hydroxychloroquine (HCQ) and the development of new cases of diabetes in these patients.
HCQ was developed to treat malaria but it has also been used to treat rheumatoid arthritis and other autoimmune diseases.
In patients with rheumatoid arthritis, use of HCQ was associated with a 53 percent reduction in the development of new cases of diabetes, the study found.
"Given the relative safety and low cost of this generic drug, HCQ may be useful in preventing diabetes in other high risk groups," said lead study investigator and Geisinger rheumatologist Androniki Bili, MD, MPH.
Researchers don't know how exactly HCQ prevents diabetes onset but it's suspected that HCQ improves glucose tolerance.
Dr. Bili presented the study's findings Monday at the American College of Rheumatology Annual Scientific Meeting in San Francisco.
About 23.6 million Americans have diabetes, while 1.3 million have rheumatoid arthritis.
People with rheumatoid arthritis are at increased risk for diabetes due to more sedentary lifestyle, chronic inflammation and use of steroid medications that can cause weight gain.
"We should revisit HCQ in the treatment of rheumatoid arthritis because, in addition to its disease-modifying properties, it might prevent the development of diabetes in this high risk group," Dr. Bili said.
Adapted from materials provided by Geisinger Health System, via EurekAlert!, a service of AAAS.
I also find this reassuring now that I've started plaquenil again.
From Science News Daily, yet another good secondary source for reviewing and interpreting peer-reviewed research:
Antimalarial Drug Prevents Diabetes In Arthritis Patients, Study Suggests
ScienceDaily (Oct. 31, 2008) — The use of an antimalarial medication may prevent the onset of diabetes in patients with rheumatoid arthritis, new Geisinger research shows.
Researchers examined the records of 2,093 Geisinger patients who received treatment for rheumatoid arthritis from 2000 to 2008. The study looked at, among other things, use of the medication hydroxychloroquine (HCQ) and the development of new cases of diabetes in these patients.
HCQ was developed to treat malaria but it has also been used to treat rheumatoid arthritis and other autoimmune diseases.
In patients with rheumatoid arthritis, use of HCQ was associated with a 53 percent reduction in the development of new cases of diabetes, the study found.
"Given the relative safety and low cost of this generic drug, HCQ may be useful in preventing diabetes in other high risk groups," said lead study investigator and Geisinger rheumatologist Androniki Bili, MD, MPH.
Researchers don't know how exactly HCQ prevents diabetes onset but it's suspected that HCQ improves glucose tolerance.
Dr. Bili presented the study's findings Monday at the American College of Rheumatology Annual Scientific Meeting in San Francisco.
About 23.6 million Americans have diabetes, while 1.3 million have rheumatoid arthritis.
People with rheumatoid arthritis are at increased risk for diabetes due to more sedentary lifestyle, chronic inflammation and use of steroid medications that can cause weight gain.
"We should revisit HCQ in the treatment of rheumatoid arthritis because, in addition to its disease-modifying properties, it might prevent the development of diabetes in this high risk group," Dr. Bili said.
Adapted from materials provided by Geisinger Health System, via EurekAlert!, a service of AAAS.
Thursday, October 8, 2009
More RA and pregnancy
For years now, since high school, the National Database for Rheumatic Diseases has been sending me a survey every 6 months. Sitting down to fill out the survey is like visiting the doctor or filling my pill containers every week -- sort of a minute or two of ritualized reflection on this sort of part of my life that is never really center (except in this blog) but always just ... there.
Today they sent me, out of the blue, a survey on pregnancy and RA.
Wow. Strange bit of synchronicity.
Starting plaquenil for the first time since like 1993. Some people pay to highlight their hair. My hair will again be almost white. If it doesn't fall out.
Okay, I'm to eat a meal with plaquenil, according to the nice pharmacist. So, like a good girl, I bought some ice cream.
Today they sent me, out of the blue, a survey on pregnancy and RA.
Wow. Strange bit of synchronicity.
Starting plaquenil for the first time since like 1993. Some people pay to highlight their hair. My hair will again be almost white. If it doesn't fall out.
Okay, I'm to eat a meal with plaquenil, according to the nice pharmacist. So, like a good girl, I bought some ice cream.
Sunday, October 4, 2009
RA and pregnancy
Recent information that is to be published in Annuals of Rheumatic Disease points to poor outcomes in pregnancy for women with R.A. -- pre-eclampsia, low birth weight, etc.
Interesting. Troubling if you're 33 and suddenly realizing that the choice on whether or not to have children may not be a choice after all. My immune system may have already made it for me.
When my grandmother, mother, cousin, and I traveled to England in September, I didn't take either of my injectable medications because getting them on and off airplanes were more trouble that they were worth for a 9 day trip, especially since the Enbrel needs refrigeration. When I got back, I quietly stopped taking the methotrexate. Methotrexate, just so you know, is a pregnancy class X drug. They give it to women to help terminate ectopic pregnancies -- it's THAT toxic to a fetus.
Conventional wisdom used to be that a woman needed to be off of methotrexate for 2 years before trying to conceive. I thought about that and decided "No way." I couldn't let myself become that disabled for that long. But now, the Enbrel is working okay and most doctors say 6 months is sufficient. Six months is doable. I think. I hope.
My last methotrexate injection was August 4th.
I need to be off Enbrel for 30 days before trying to conceive, so if I stop that January 4th, I should be cleared for take-off, so to speak, in February.
There are all the bigger issues that come with deciding on whether or not to become a parent. There's the stability and money and career and lifestyle questions (I'm fairly sure that I cannot raise a child on poptarts and Dr. Pepper.) But it's almost as if I'm afraid to think of them because that would be admitting that I'm trying. And that would be setting myself up for what might happen if I find I cannot.
Better then, to take a quasi-scientific interest in drug half lives and metabolic issues than to think about what success or failure might mean.
And if I have this little person, with half my genes, those genes will have RA lurking in the shadows. It's not horrible to have RA. It's not cancer. It's not MS, or muscular dystrophy, or Tay-Sachs, or cystic fibrosis. But to saddle a little person with the possibility -- to knowingly take the risk of passing it on to someone else -- it's a horrible feeling. And although RA isn't genetic in the Mendelian sense, it's well-documented that autoimmune diseases cluster in families and some have genetic basis as well as links to autism.
This is challenging all my feelings about disability and ability. I no longer see disabled children as tragedies -- I have met so many wonderful amazing human beings with all ranges of abilities that I refuse to think there is anything "wrong" with having a child with Angelman, with Down, with cp. I've considered adopting a child with special needs even.
But this is different. It's taking a life that doesn't exist and to knowingly risk inflicting suffering on that life. All I know about that potential human is that he or she might suffer because of my genes. I understand now how terrifying prenatal diagnosis must be to people who are not involved with disabilities and I see how one might equate all disability with suffering. I see how one might be tempted to choose lack of existence over what they see as a painful one, even though I know better intellectually and intuitively, and I have seen every day how those "painful" existences are as joyful or as difficult as anyone else's in the world.
I know better. I know better. I'm going in to school tomorrow to a classful of kids with a variety of different disabilities and I know that their lives are harder than their peers' lives in many ways, but not so hard I would wish for lack of existence as an alternative. There is a stubborn grace to my kids, even the brats -- no, especially the brats -- demonstrate more strength and resilience and humor and humanity than most people ever get to witness. And I have 12 of them waiting for me tomorrow, which will come too soon because I've been up blogging.
Whatever genes I give my kid, if I'm able to have a kid, I hope that he or she gets a fraction of the spirit that the kids in my class have.
Links:
From About.com, which is usually well-researched:
Pregnancy Advice for Women with Arthritis
Women With Lupus And Rheumatoid Arthritis Have Greater Pregnancy Complications
Interesting. Troubling if you're 33 and suddenly realizing that the choice on whether or not to have children may not be a choice after all. My immune system may have already made it for me.
When my grandmother, mother, cousin, and I traveled to England in September, I didn't take either of my injectable medications because getting them on and off airplanes were more trouble that they were worth for a 9 day trip, especially since the Enbrel needs refrigeration. When I got back, I quietly stopped taking the methotrexate. Methotrexate, just so you know, is a pregnancy class X drug. They give it to women to help terminate ectopic pregnancies -- it's THAT toxic to a fetus.
Conventional wisdom used to be that a woman needed to be off of methotrexate for 2 years before trying to conceive. I thought about that and decided "No way." I couldn't let myself become that disabled for that long. But now, the Enbrel is working okay and most doctors say 6 months is sufficient. Six months is doable. I think. I hope.
My last methotrexate injection was August 4th.
I need to be off Enbrel for 30 days before trying to conceive, so if I stop that January 4th, I should be cleared for take-off, so to speak, in February.
There are all the bigger issues that come with deciding on whether or not to become a parent. There's the stability and money and career and lifestyle questions (I'm fairly sure that I cannot raise a child on poptarts and Dr. Pepper.) But it's almost as if I'm afraid to think of them because that would be admitting that I'm trying. And that would be setting myself up for what might happen if I find I cannot.
Better then, to take a quasi-scientific interest in drug half lives and metabolic issues than to think about what success or failure might mean.
And if I have this little person, with half my genes, those genes will have RA lurking in the shadows. It's not horrible to have RA. It's not cancer. It's not MS, or muscular dystrophy, or Tay-Sachs, or cystic fibrosis. But to saddle a little person with the possibility -- to knowingly take the risk of passing it on to someone else -- it's a horrible feeling. And although RA isn't genetic in the Mendelian sense, it's well-documented that autoimmune diseases cluster in families and some have genetic basis as well as links to autism.
This is challenging all my feelings about disability and ability. I no longer see disabled children as tragedies -- I have met so many wonderful amazing human beings with all ranges of abilities that I refuse to think there is anything "wrong" with having a child with Angelman, with Down, with cp. I've considered adopting a child with special needs even.
But this is different. It's taking a life that doesn't exist and to knowingly risk inflicting suffering on that life. All I know about that potential human is that he or she might suffer because of my genes. I understand now how terrifying prenatal diagnosis must be to people who are not involved with disabilities and I see how one might equate all disability with suffering. I see how one might be tempted to choose lack of existence over what they see as a painful one, even though I know better intellectually and intuitively, and I have seen every day how those "painful" existences are as joyful or as difficult as anyone else's in the world.
I know better. I know better. I'm going in to school tomorrow to a classful of kids with a variety of different disabilities and I know that their lives are harder than their peers' lives in many ways, but not so hard I would wish for lack of existence as an alternative. There is a stubborn grace to my kids, even the brats -- no, especially the brats -- demonstrate more strength and resilience and humor and humanity than most people ever get to witness. And I have 12 of them waiting for me tomorrow, which will come too soon because I've been up blogging.
Whatever genes I give my kid, if I'm able to have a kid, I hope that he or she gets a fraction of the spirit that the kids in my class have.
Links:
From About.com, which is usually well-researched:
Pregnancy Advice for Women with Arthritis
Women With Lupus And Rheumatoid Arthritis Have Greater Pregnancy Complications
Saturday, September 5, 2009
My grandma's social cognition and pillow theft
August 7 2009
12:53 London time
In bed in a small hot room in Feltham.
My grandmother in a bed a foot from me. She has three pillows; I have one, just so you know.
"I sure wish I had a pillow for my swollen feet" she said not too long ago.
"Grandma, you have two under your head. Do you want me to move one?"
"Well, I like sleeping with two pillows under my head" she said.
I thought if she has a stroke because she didn't have enough elevation in her feet, it will be my fault...
I've had a Bulmers, danced with my cousins while singing "Sweet Caroline" and "Release Me." There's a lot I want to comment about, about past and present, about history of a place and a person and a family, but to make it fit into this blog, I'll talk about language and disability a little bit, specifically, the language of the elderly, or more specifically, the language of the elderly British woman who emigrated to America 64 years ago at the age of 22 who has very sweetly managed to get me to convince her that I don't need my pillow. Of course I do.
That lady is now whispering to herself. I think it's the Ambien, but it's sort of creepy. She once beat the holy hell out of me in her sleep when we had to share a bed on vacation in 1994. Mom ended up paying us to share a bed with her. It started out as $10 a pop and was up to $50 at the end of that long vacation. I still slept on the floor.
Dude, her sleep voice is gravelly and lispy without her teeth. I'm a bit freaked out. She sounds like a demon. If this keeps up, I might go next door to my mom to see if she will continue her subsidies for grandma-induced sleep trauma.
My grandmother has a specific way of social cognition that is almost the opposite of Asperger's. She has always had a composite quality to her, as if she is finding the social role she is expected to play and is playing it. Which can be frustrating and unfortunately makes us doubt her sincerity. Which isn't fair at all I know she's sincere, even when she's acting. The more I know of her history, the more I understand that she was abused by her father, whom she loved, and that she lived through terrible traumas of war, her sister's death, and sepratation from all she loved all at once, I understand her mode of social thinking, of being so eager to please that she is hard to please. Like how she won't ask for the pillow but make it very obvious that she wants it in such a way that I end up begging her to take it. Maddening at times. But damn funny.
When awake, when unsure of herself, when bored, or when wanting to assert that she is important and not to be left out of plans, she has slipped more into the mode that my kids use. She asks where we are going over and over, what we are doing next, what other people are doing, things like that, exactly like my kids in this post. She pretends that things we've discussed for days have not been discussed with her and gets insulted.
Grandma:"What's the plan tonight?"
Mom:"You're spending the night with Janet tonight."
Grandma: "I AM? No one tells me anything."
Mom: "Oh mom, you packed the bag!"
Whether she's pretending, forgot, or just needs that reassurance is hard tell. Then, minutes later, she is insulted when we give her directions. She's senile at one moment and totally competent the next.
It's worse at night, after her ambien. She asks over and over what my mom is doing, even though I'm in the same room with her and not my mom, so I obviously don't know what mom is doing. She asks about over and over about plans too. I think the ambien confuses her, but I also think she's trying to make conversation with her granddaughter, who is tired and really does not want to answer those questions. That's the social over-awareness, almost a paranoia that she's always had, but it is getting worse as she's getting older and is aware now that she needs taking care of.
It's hard to grapple with the fact that my grandma is now someone to make allowances for. She always had some of these qualities about her, but it's distressing now to see her cognition decline. She's not had any major medical trauma, but repeated TIA's, mini-strokes, that have left her slghtly more confused with each attack. She knows it. "Senile, that's what your grandma is," she's said more than once. She's not senile. She has less consideration for her listeners, wants to tell her story and dominate the conversation, and experiences more momentary aphasia than she did before. Those are all normal patterns of language in someone who is 87, but it's my grandma. I don't want her to lose her language, her cognition, her stories. Not yet. I don't want strangers to see her struggle for words, to see her ask her millionth question, and think "that poor old lady." Yet, here in England, among her family, where she's known and loved, it's great to relax a little and let her be. Everyone understands her here and if she's more demanding than she used to be, that's okay. She's 87 years old, their sister who married that handsome, gentle, GI from Missouri and followed him there. She's allowed her quirks. And as I lay here, relieved that her evil-ambien sleep mumbling has dropped off into snores, I wish could rewind and capture all of her stories before they are gone. I know that too soon, I will give anything to have her ask me endless annoying questions again.
And I think that's probably worth the pillow. Maybe.
12:53 London time
In bed in a small hot room in Feltham.
My grandmother in a bed a foot from me. She has three pillows; I have one, just so you know.
"I sure wish I had a pillow for my swollen feet" she said not too long ago.
"Grandma, you have two under your head. Do you want me to move one?"
"Well, I like sleeping with two pillows under my head" she said.
I thought if she has a stroke because she didn't have enough elevation in her feet, it will be my fault...
I've had a Bulmers, danced with my cousins while singing "Sweet Caroline" and "Release Me." There's a lot I want to comment about, about past and present, about history of a place and a person and a family, but to make it fit into this blog, I'll talk about language and disability a little bit, specifically, the language of the elderly, or more specifically, the language of the elderly British woman who emigrated to America 64 years ago at the age of 22 who has very sweetly managed to get me to convince her that I don't need my pillow. Of course I do.
That lady is now whispering to herself. I think it's the Ambien, but it's sort of creepy. She once beat the holy hell out of me in her sleep when we had to share a bed on vacation in 1994. Mom ended up paying us to share a bed with her. It started out as $10 a pop and was up to $50 at the end of that long vacation. I still slept on the floor.
Dude, her sleep voice is gravelly and lispy without her teeth. I'm a bit freaked out. She sounds like a demon. If this keeps up, I might go next door to my mom to see if she will continue her subsidies for grandma-induced sleep trauma.
My grandmother has a specific way of social cognition that is almost the opposite of Asperger's. She has always had a composite quality to her, as if she is finding the social role she is expected to play and is playing it. Which can be frustrating and unfortunately makes us doubt her sincerity. Which isn't fair at all I know she's sincere, even when she's acting. The more I know of her history, the more I understand that she was abused by her father, whom she loved, and that she lived through terrible traumas of war, her sister's death, and sepratation from all she loved all at once, I understand her mode of social thinking, of being so eager to please that she is hard to please. Like how she won't ask for the pillow but make it very obvious that she wants it in such a way that I end up begging her to take it. Maddening at times. But damn funny.
When awake, when unsure of herself, when bored, or when wanting to assert that she is important and not to be left out of plans, she has slipped more into the mode that my kids use. She asks where we are going over and over, what we are doing next, what other people are doing, things like that, exactly like my kids in this post. She pretends that things we've discussed for days have not been discussed with her and gets insulted.
Grandma:"What's the plan tonight?"
Mom:"You're spending the night with Janet tonight."
Grandma: "I AM? No one tells me anything."
Mom: "Oh mom, you packed the bag!"
Whether she's pretending, forgot, or just needs that reassurance is hard tell. Then, minutes later, she is insulted when we give her directions. She's senile at one moment and totally competent the next.
It's worse at night, after her ambien. She asks over and over what my mom is doing, even though I'm in the same room with her and not my mom, so I obviously don't know what mom is doing. She asks about over and over about plans too. I think the ambien confuses her, but I also think she's trying to make conversation with her granddaughter, who is tired and really does not want to answer those questions. That's the social over-awareness, almost a paranoia that she's always had, but it is getting worse as she's getting older and is aware now that she needs taking care of.
It's hard to grapple with the fact that my grandma is now someone to make allowances for. She always had some of these qualities about her, but it's distressing now to see her cognition decline. She's not had any major medical trauma, but repeated TIA's, mini-strokes, that have left her slghtly more confused with each attack. She knows it. "Senile, that's what your grandma is," she's said more than once. She's not senile. She has less consideration for her listeners, wants to tell her story and dominate the conversation, and experiences more momentary aphasia than she did before. Those are all normal patterns of language in someone who is 87, but it's my grandma. I don't want her to lose her language, her cognition, her stories. Not yet. I don't want strangers to see her struggle for words, to see her ask her millionth question, and think "that poor old lady." Yet, here in England, among her family, where she's known and loved, it's great to relax a little and let her be. Everyone understands her here and if she's more demanding than she used to be, that's okay. She's 87 years old, their sister who married that handsome, gentle, GI from Missouri and followed him there. She's allowed her quirks. And as I lay here, relieved that her evil-ambien sleep mumbling has dropped off into snores, I wish could rewind and capture all of her stories before they are gone. I know that too soon, I will give anything to have her ask me endless annoying questions again.
And I think that's probably worth the pillow. Maybe.
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