Here is a link to an informational lupus tutorial from the US National Library of Medicine and the National Institute of Health (NIH). It does a good job of explaining the disease, its symptoms, and common treatments. Some of the pictures made me chuckle...
http://www.nlm.nih.gov/medlineplus/tutorials/lupus/htm/index.htm
- a little lupie -
Friday, April 22, 2011
Thursday, April 21, 2011
No Progress
So, I spoke too soon. Drawing less blood doesn't indicate getting better. It just indicates that we just need the basic information to show that I'm not getting better. :(
If you've been following the blog for the past few weeks, you'll know that I've been suffering from joint pain, fatigue, and continuing hair loss. When I went over the symptoms with Rheumy, he said he had a feeling I might have started flaring based on my blood test results. My lab results show that I still have low blood cell counts (both red and white), and the sedimentation rate has not improved. Rheumy bumped my prednisone dosage back up to 5 mg and said that we'd need to add another medication since I wasn't showing any improvement.
At my last two Rheumy visits, he had talked to me about Azathioprine (Imuran) and ran a blood test (thiopurine methyltransferase - TPMT) to see if I had a gene that could lead to excess drug toxicity. Well, blood test came back and I am heterozygous for the gene (doesn't this take you back to biology class?!), meaning that my body metabolizes the drug slowly. If I were homozygous (both alleles the same), that would mean my body couldn't metabolize the drug and I wouldn't be able to take it. Because I am heterozygous, I can take the medication, but will have to start with a very low dose and be closely monitored for excess drug toxicity. This can cause more complications, including me ending up in the hospital. Also, because the medication may actually cause lower blood counts, I'll probably need to bump up the prednisone for a while to help counteract this as I start it.
Because of this, Rheumy also offered another drug option -- Methotrexate (Rheumatrex, Trexall). This is a drug that is often used to treat cancer patients and has some pretty scary sounding side-effects (liver damage, lymphoma, lung damage, and life-threatening skin reactions). These side effects are usually the result of taking higher dosages for cancer, but since I would be taking it for lupus, the dosage would be much lower. Even so, it can cause mouth sores, more hair loss, and fatigue. Still scary. The drug is not safe to take while pregnant, so if I want to think about pregnancy in the next year or so, this wouldn't be a good option. It would take a few months to ramp me up to the right dosage, then if I want to try getting pregnant, we'd need to ramp down and be off the drug for three months. The one benefit of this drug is that I would only need to take it once a week.
After hearing both of these options, I asked Rheumy what the risk would be if I decided not to take either of them. He said that the risk would be that the lupus stays the same or gets worse. If it gets worse and starts affecting my organs, that could be dangerous. He mentioned a few other drugs that lupies take, but he said that my lupus was not serious enough for those yet. These two drugs are probably the lowest-risk options for me right now. I needed some time to think about this and do more research, so we agreed to wait until my next visit in three weeks to see if my blood tests improve and for me to make a decision. Right now I am leaning towards the azathioprine versus the methotrexate, but I'd really prefer neither of them!
In other news, today I woke up with joint pain in my left elbow. It is funny how a body part goes unnoticed and taken for granted until something is wrong with it.
- a little lupie -
If you've been following the blog for the past few weeks, you'll know that I've been suffering from joint pain, fatigue, and continuing hair loss. When I went over the symptoms with Rheumy, he said he had a feeling I might have started flaring based on my blood test results. My lab results show that I still have low blood cell counts (both red and white), and the sedimentation rate has not improved. Rheumy bumped my prednisone dosage back up to 5 mg and said that we'd need to add another medication since I wasn't showing any improvement.
At my last two Rheumy visits, he had talked to me about Azathioprine (Imuran) and ran a blood test (thiopurine methyltransferase - TPMT) to see if I had a gene that could lead to excess drug toxicity. Well, blood test came back and I am heterozygous for the gene (doesn't this take you back to biology class?!), meaning that my body metabolizes the drug slowly. If I were homozygous (both alleles the same), that would mean my body couldn't metabolize the drug and I wouldn't be able to take it. Because I am heterozygous, I can take the medication, but will have to start with a very low dose and be closely monitored for excess drug toxicity. This can cause more complications, including me ending up in the hospital. Also, because the medication may actually cause lower blood counts, I'll probably need to bump up the prednisone for a while to help counteract this as I start it.
Because of this, Rheumy also offered another drug option -- Methotrexate (Rheumatrex, Trexall). This is a drug that is often used to treat cancer patients and has some pretty scary sounding side-effects (liver damage, lymphoma, lung damage, and life-threatening skin reactions). These side effects are usually the result of taking higher dosages for cancer, but since I would be taking it for lupus, the dosage would be much lower. Even so, it can cause mouth sores, more hair loss, and fatigue. Still scary. The drug is not safe to take while pregnant, so if I want to think about pregnancy in the next year or so, this wouldn't be a good option. It would take a few months to ramp me up to the right dosage, then if I want to try getting pregnant, we'd need to ramp down and be off the drug for three months. The one benefit of this drug is that I would only need to take it once a week.
After hearing both of these options, I asked Rheumy what the risk would be if I decided not to take either of them. He said that the risk would be that the lupus stays the same or gets worse. If it gets worse and starts affecting my organs, that could be dangerous. He mentioned a few other drugs that lupies take, but he said that my lupus was not serious enough for those yet. These two drugs are probably the lowest-risk options for me right now. I needed some time to think about this and do more research, so we agreed to wait until my next visit in three weeks to see if my blood tests improve and for me to make a decision. Right now I am leaning towards the azathioprine versus the methotrexate, but I'd really prefer neither of them!
In other news, today I woke up with joint pain in my left elbow. It is funny how a body part goes unnoticed and taken for granted until something is wrong with it.
- a little lupie -
Tuesday, April 19, 2011
Progress
Today I went to do blood work and they only drew two vials of blood (vs. the 7-8 that they usually take). I'm taking this as a good sign.
Just a little sign of progress, but I'll take what I can get!
Tomorrow is my appointment with Rheumy, so I'll be back with an update....
- a little lupie -
Just a little sign of progress, but I'll take what I can get!
Tomorrow is my appointment with Rheumy, so I'll be back with an update....
- a little lupie -
Saturday, April 16, 2011
Exhausted
It's been a busy week for this lupie, and I've been too exhausted to blog much. In addition to getting my taxes done this week, I had a big deadline at work as well as a mandatory team building field trip to Magic Island. It is nice to get out of the office, but it is also difficult because they often choose outdoor activities which put me out in the sun. I don't get the malar rash that is common with lupies, and I don't get extremely sick as I heard was also possible, but it does exhaust me. Hubby thinks I should tell them that I can't go on these outings, since he thinks it could trigger a flare, but I don't really want to be difficult or miss out on anything.
Today we went to the Iolani Family Fair. It was fun, but another day of being out in the sun and a long walk to and from the car. I was totally exhausted after just a couple hours. It's hard for me to tell if this is just the "normal" exhaustion that comes from being in the sun, or if it is magnified by lupus.
Other than that, not much has been going on. I've been having trouble making it to my 10:30 bedtime and actually find myself going to sleep even earlier.
- a little lupie -
Today we went to the Iolani Family Fair. It was fun, but another day of being out in the sun and a long walk to and from the car. I was totally exhausted after just a couple hours. It's hard for me to tell if this is just the "normal" exhaustion that comes from being in the sun, or if it is magnified by lupus.
Other than that, not much has been going on. I've been having trouble making it to my 10:30 bedtime and actually find myself going to sleep even earlier.
- a little lupie -
Saturday, April 9, 2011
Haircut
It's been about a year since my last haircut. Despite not wanting to lose any more hair, I went in today to get my hair cut. With the amount of hair I have been losing, my hair is really thinning out and the ends were starting to look limp and straggly.
I explained to the hairdresser that I had started some medication that was causing me to lose my hair. She said that she's had 4 clients recently tell her the same thing. She helped me clean up my straggly ends but kept some layers in to add some style and bounce. She also gave me a few tips to help my hair grow.
First, she said to stop babying my hair (I told her how I tried to avoid touching my hair much to keep it from falling out). Instead, she encouraged me to brush my hair often since it will remove the loose hairs (which are going to fall out anyway) and will get circulation going to the scalp, which is what will help the hair to grow.
She also suggested trying a Korean seaweed soup. She recently gave birth and her mother-in-law made this soup for her every day. She thinks the iron in the seaweed helped to prevent the normal hair loss that occurs after delivery.
Another tip she gave me was to take care of the scalp by massaging it with olive oil for five minutes, wrapping it in a hot towel for ten minutes, then washing it out with shampoo (no conditioner). She says it is important to keep the hair follicles clean and clear so that they do not get clogged and prevent the hair from growing.
I'll give some of these tips a try and report back -- what do I have to lose...besides more hair?
- a little lupie -
4/10/11 EDIT: Aunty Lupette asked about special shampoos like Nioxin. I forgot to mention that my hair dresser did suggest trying a special shampoo for hair growth (though she wasn't specific in a brand), but she didn't have any personal experience with it. She also showed me some places on my neck and collar bone to massage to stimulate the hormones that could encourage hair growth. She gave me many tips, so hopefully at least one of them will work! She said the important thing would be to continue doing it consistently...it won't make a big difference if I only try a couple times then stop.
I explained to the hairdresser that I had started some medication that was causing me to lose my hair. She said that she's had 4 clients recently tell her the same thing. She helped me clean up my straggly ends but kept some layers in to add some style and bounce. She also gave me a few tips to help my hair grow.
First, she said to stop babying my hair (I told her how I tried to avoid touching my hair much to keep it from falling out). Instead, she encouraged me to brush my hair often since it will remove the loose hairs (which are going to fall out anyway) and will get circulation going to the scalp, which is what will help the hair to grow.
Another tip she gave me was to take care of the scalp by massaging it with olive oil for five minutes, wrapping it in a hot towel for ten minutes, then washing it out with shampoo (no conditioner). She says it is important to keep the hair follicles clean and clear so that they do not get clogged and prevent the hair from growing.
I'll give some of these tips a try and report back -- what do I have to lose...besides more hair?
- a little lupie -
4/10/11 EDIT: Aunty Lupette asked about special shampoos like Nioxin. I forgot to mention that my hair dresser did suggest trying a special shampoo for hair growth (though she wasn't specific in a brand), but she didn't have any personal experience with it. She also showed me some places on my neck and collar bone to massage to stimulate the hormones that could encourage hair growth. She gave me many tips, so hopefully at least one of them will work! She said the important thing would be to continue doing it consistently...it won't make a big difference if I only try a couple times then stop.
Friday, April 8, 2011
Mosquitoes Love Lupies
While it has not considered a symptom of lupus, a search on the internet reveals that many lupies suffer from extreme reactions to mosquito bites. Many lupies also claim to attract mosquitoes. I have always been one of those "lucky" ones that the mosquitoes are always drawn to (must be because I'm so sweet), and that has bad reactions to their bites. My bites usually get big and puffy and can last weeks.
According to the Mayo Clinic:
So it makes sense that lupus, which is a disease in which the immune system is hyperactive, would cause more intense reactions to mosquito bites. Before being diagnosed with lupus, I thought my extreme reaction was because I was allergic to the mosquito saliva, but now I'm inclined to blame this one on lupus too.
I bring up this subject because I was recently on a field trip for work which brought me into a lush valley swarming with mosquitoes. Luckily I was wearing jeans, long sleeves, shoes, and a jacket, but those suckers (literally) managed to get me a couple times on my face. Now I have a swollen eye that looks like it is starting to bruise. It seriously looks like I was punched in the eye. Ahh, the hazards of work...
On a side note, while plaquenil (hydroxychloroquine) is a medicine designed to prevent malaria from mosquito bites, I haven't found any information to suggest that it helps lessen mosquito attraction or bite reaction. I suspect that the prednisone (a corticosteroid to reduce inflammation) I am taking has worked to lessen the swelling -- I imagine that without it, my eye would look much worse.
- a little lupie -
According to the Mayo Clinic:
Mosquito bites are caused by the bite of a female mosquito. The female mosquito feeds off your blood by piercing your skin with her mouth (proboscis). While sucking your blood, she also deposits some of her saliva into your skin. This saliva contains proteins that remain in your skin. Your immune system may then react to those proteins, resulting in the characteristic itching and bump.
So it makes sense that lupus, which is a disease in which the immune system is hyperactive, would cause more intense reactions to mosquito bites. Before being diagnosed with lupus, I thought my extreme reaction was because I was allergic to the mosquito saliva, but now I'm inclined to blame this one on lupus too.
I bring up this subject because I was recently on a field trip for work which brought me into a lush valley swarming with mosquitoes. Luckily I was wearing jeans, long sleeves, shoes, and a jacket, but those suckers (literally) managed to get me a couple times on my face. Now I have a swollen eye that looks like it is starting to bruise. It seriously looks like I was punched in the eye. Ahh, the hazards of work...
On a side note, while plaquenil (hydroxychloroquine) is a medicine designed to prevent malaria from mosquito bites, I haven't found any information to suggest that it helps lessen mosquito attraction or bite reaction. I suspect that the prednisone (a corticosteroid to reduce inflammation) I am taking has worked to lessen the swelling -- I imagine that without it, my eye would look much worse.
- a little lupie -
Wednesday, April 6, 2011
Lupus, Is That You?
What makes lupus so confusing is that its symptoms are so similar to other diseases/illnesses/maladies, that it makes it difficult to discern what is what.
I have been dealing with recurring ear infections over the past few years (not sure if it is in any way connected to the lupus). I never had a problem with it as a kid, but in the past few years, I'll get two or three a year. I felt the start of one the other day so made an appointment to see the doctor tomorrow. Last night, however, the pain got pretty bad and I could not sleep. Add a fever, chills, and a sore throat, and I was not a happy camper. When I woke up this morning, I was dizzy and could barely stand. I called the doctor to see if I could come in today instead. I was able to get in and she prescribed azithromycin for me. I recently found that I was allergic to penicillin, so I couldn't take amoxicillin (which I usually get in liquid form because of my pill-swallowing issue). Dr. C searched for another liquid for me, but the only thing she could find was azithromycin, which the pharmacist claimed was a tiny, tiny pill. Okay, I can take my prednisone and levothyroxine, so a tiny pill should be okay. Well, when I got it, it was NOT tiny. It is pretty huge in my eyes. Anyways, the pharmacist said I could crush it, so I could deal with it.
After picking up my medicine, I picked up some Burger King for lunch and headed in to work. As I ate my lunch, I took my first dose of azithromycin. An hour later, I didn't feel good. My stomach was sore, I was nauseated, and I felt hot. I decided to take the rest of the day off and go home. The 5 block walk to my car felt much longer and I was worried if I would even be able to drive home safely.
I made it home and crawled into bed. I had stomach cramps and diarrhea. It got me worried because that is how my first flare started. I slept for a few hours and felt a little better. I'm still not sure what caused me to feel sick -- Was it lupus? Was it a side effect of the azithromycin? Was it the ear infection? Or was it food poisoning? Maybe a combination?
- a little lupie -
I have been dealing with recurring ear infections over the past few years (not sure if it is in any way connected to the lupus). I never had a problem with it as a kid, but in the past few years, I'll get two or three a year. I felt the start of one the other day so made an appointment to see the doctor tomorrow. Last night, however, the pain got pretty bad and I could not sleep. Add a fever, chills, and a sore throat, and I was not a happy camper. When I woke up this morning, I was dizzy and could barely stand. I called the doctor to see if I could come in today instead. I was able to get in and she prescribed azithromycin for me. I recently found that I was allergic to penicillin, so I couldn't take amoxicillin (which I usually get in liquid form because of my pill-swallowing issue). Dr. C searched for another liquid for me, but the only thing she could find was azithromycin, which the pharmacist claimed was a tiny, tiny pill. Okay, I can take my prednisone and levothyroxine, so a tiny pill should be okay. Well, when I got it, it was NOT tiny. It is pretty huge in my eyes. Anyways, the pharmacist said I could crush it, so I could deal with it.
After picking up my medicine, I picked up some Burger King for lunch and headed in to work. As I ate my lunch, I took my first dose of azithromycin. An hour later, I didn't feel good. My stomach was sore, I was nauseated, and I felt hot. I decided to take the rest of the day off and go home. The 5 block walk to my car felt much longer and I was worried if I would even be able to drive home safely.
I made it home and crawled into bed. I had stomach cramps and diarrhea. It got me worried because that is how my first flare started. I slept for a few hours and felt a little better. I'm still not sure what caused me to feel sick -- Was it lupus? Was it a side effect of the azithromycin? Was it the ear infection? Or was it food poisoning? Maybe a combination?
- a little lupie -
Saturday, April 2, 2011
I'm Okay
In case anyone is worried after yesterday's post (other than Mommy Lupette and Daddy Lupette, who I already talked to today), I am doing okay. The joint pain has subsided and I am able to move around today without pain. I was able to sleep in and rest for most of the day. I am still feeling tired and have some stomach pains, but am otherwise feeling okay. Not great, but okay.
I also received a gift from Aunty and Uncle Lupette that helped brighten my day. Aren't they just too beautiful to eat?!
- a little lupie -
I also received a gift from Aunty and Uncle Lupette that helped brighten my day. Aren't they just too beautiful to eat?!
- a little lupie -
The Etymology of "Lupus"
"Lupus" means "wolf" in Latin. There are several explanations as to why the word was chosen to describe the disease we now know as Systemic Lupus Erythematosus (SLE).
The most common explanation I have read about is that the common butterfly rash seen on the nose and cheeks of lupus patients is similar to the facial markings of a wolf.
However, the explanation that I like best is one I came across while searching for a picture of "lupus wolf." I think it is a wonderfully artsy analogy between the animal and the disease.
Has anyone heard of other explanations or have other thoughts?
- a little lupie -
Friday, April 1, 2011
The April Fool
Since it is April Fools' Day, lupus decided to take the opportunity to show me what a fool I have been to think I have won the battle. I have bad joint pain in my knees making it difficult to sit or stand without wincing or groaning. My walking has been slowed down to a hobbling in which I try to bend my knees as little as possible. I'm hoping this is only temporary, but if the pain remains tomorrow, I'll call Rheumy to see if I need to go in or if I should increase my prednisone dosage.
- a little lupie -
- a little lupie -
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