Hemoglobin level dropped to 10.6. Hemey keeping me on 4,000 units of Procrit weekly.
My white blood cell count is still low. I'm a little confused as to why lupus patients usually have low white blood cell counts when their immune system is overactive. This seems counterintuitive to me. I'll have to ask Hemey/Rheumy at my next appointment.
- a little lupie -
Tuesday, December 6, 2011
Friday, December 2, 2011
Belated Rheumy Update
I went to the Rheumy almost a week ago but didn't update, which can be taken as a good sign. It was a pretty uneventful appointment and I don't have to go back for another 8 weeks (yippee!). I must say, though, that after being to several other doctors offices, I really like my Rheumy. He, himself, is good -- he listens to me, explains things and offers me options, and makes sure all of my questions are answered. The other things that I really appreciate are his staff and his office. His front office is organized, responsive, and friendly. They know who I am when I walk in, and I never have to wait very long. The office itself is tidy and CLEAN. I don't feel gross and like I don't want to touch anything or sit on the chairs like I do when I visit other doctor offices. These may seem like little things, but they make a world of a difference when having to do an otherwise unpleasant thing like going to the doctor.
My laboratory results still showed low blood counts -- my hemoglobin is still right at 10.9, which is lower than "normal", but the highest it can be for me to keep getting my Procrit shots. My white blood cell count is also still low.
My fatigue has been lessening thanks to the Procrit, but now I have to be careful not to overdo myself. I'm so excited to be able to have the energy to do things after coming home from work and stay up past 7:00 that I do...but then I don't get my 9 hours of sleep and feel crashed the next day. Also, with the holidays, things are much busier again. This is around the time last year that I started showing symptoms before my diagnosis, so I'll need to watch out. Stress is one of the triggers for lupus. I think I've been pushing myself a little too much this past week, and it is taking a toll on my body. Time to take it easy for a while...
- a little lupie -
My laboratory results still showed low blood counts -- my hemoglobin is still right at 10.9, which is lower than "normal", but the highest it can be for me to keep getting my Procrit shots. My white blood cell count is also still low.
My fatigue has been lessening thanks to the Procrit, but now I have to be careful not to overdo myself. I'm so excited to be able to have the energy to do things after coming home from work and stay up past 7:00 that I do...but then I don't get my 9 hours of sleep and feel crashed the next day. Also, with the holidays, things are much busier again. This is around the time last year that I started showing symptoms before my diagnosis, so I'll need to watch out. Stress is one of the triggers for lupus. I think I've been pushing myself a little too much this past week, and it is taking a toll on my body. Time to take it easy for a while...
- a little lupie -
Friday, November 11, 2011
Feeling Better
It's been three weeks since my first Procrit shot. I feel like it has given me more energy than before, but I still don't feel "normal" or how I feel like I should. It has helped me in that I have some energy to run a quick errand or go out to dinner after work. I used to be wiped out and in bed by about 7 pm, but I can stay up until 9-10 now.
I went to see Hemey today and my bloodwork confirmed that my hemoglobin did indeed go up, which is the good news. The bad news? I am at 10.9...once I hit 11, I can't get the Procrit anymore. I know I should be grateful for what I have, but a part of me is a little pissed that this is the best I can get. A level between 12 and 15 is considered normal, but since I am "good enough to survive," I don't deserve better?! Hemey dropped my Procrit to 4,000 units weekly (previously I was at 10,000 units weekly) to try to keep my hemoglobin at the same level. If I go above 11, I'll have to stop taking the Procrit for a while. Hemey said that the lowest dosage they give is 2,000 units every other week and the highest dosage is 60,000 units every week, so I am on the low side.
Oh, how I'd love to just feel "normal" again...
- a little lupie -
I went to see Hemey today and my bloodwork confirmed that my hemoglobin did indeed go up, which is the good news. The bad news? I am at 10.9...once I hit 11, I can't get the Procrit anymore. I know I should be grateful for what I have, but a part of me is a little pissed that this is the best I can get. A level between 12 and 15 is considered normal, but since I am "good enough to survive," I don't deserve better?! Hemey dropped my Procrit to 4,000 units weekly (previously I was at 10,000 units weekly) to try to keep my hemoglobin at the same level. If I go above 11, I'll have to stop taking the Procrit for a while. Hemey said that the lowest dosage they give is 2,000 units every other week and the highest dosage is 60,000 units every week, so I am on the low side.
Oh, how I'd love to just feel "normal" again...
- a little lupie -
Saturday, November 5, 2011
Grand-lupie?
When the doctors first suspected that I had lupus, they all asked if anyone in my family had lupus. I said "no," because there was no one in my family that was diagnosed with lupus. However, now I am realizing that not being diagnosed does not mean that they didn't have lupus.
In particular, I have been wondering if it is possible that my grandma had lupus. She died of cancer, but I remember her dealing with joint pain, fatigue, and low blood count. This was all before I got diagnosed with lupus, so I couldn't relate to it, but now that I think about it, it all sounds very similar. In addition, a study has shown that patients with lupus are 15% more likely to develop cancer than the general population.
What makes lupus so difficult to diagnose is that it's symptoms are so similar to other diseases. Is it possible that lupus was overlooked by doctors because they could just as well explain these symptoms as being caused by the cancer? In my grandmother's day, a lot less was known about lupus, so it may not have even been something doctors would consider. Although lupus is not necessarily hereditary, researches believe that there is some kind of genetic link that makes one more predispositioned for the disease. Now, I'm not saying that my grandma had lupus, but I'm just thinking that it could be possible.
- a little lupie -
In particular, I have been wondering if it is possible that my grandma had lupus. She died of cancer, but I remember her dealing with joint pain, fatigue, and low blood count. This was all before I got diagnosed with lupus, so I couldn't relate to it, but now that I think about it, it all sounds very similar. In addition, a study has shown that patients with lupus are 15% more likely to develop cancer than the general population.
What makes lupus so difficult to diagnose is that it's symptoms are so similar to other diseases. Is it possible that lupus was overlooked by doctors because they could just as well explain these symptoms as being caused by the cancer? In my grandmother's day, a lot less was known about lupus, so it may not have even been something doctors would consider. Although lupus is not necessarily hereditary, researches believe that there is some kind of genetic link that makes one more predispositioned for the disease. Now, I'm not saying that my grandma had lupus, but I'm just thinking that it could be possible.
- a little lupie -
Sunday, October 30, 2011
Insurance
One thing lupus has taught me is not to take your health for granted.
Less than a year ago I thought I was healthy and hardly ever went to the doctor. When I started my new job in December and had to enroll for medical benefits, I declined coverage (I was covered under my husband's plan). I had been considering getting a life insurance policy but kept putting it off because I didn't really have a need for it (no dependents, no house, etc.).
On January 1, 2011, that all changed. I think the universe was playing some cruel joke on me in that I got sick on the day that my additional medical coverage would have started. January 1st is the day I got sick with what I consider my first flare and what eventually led to my lupus diagnosis.
From there, everything changed. Doctors and laboratory tests became a weekly occurrence, and I silently cursed myself for mistakingly thinking I was so healthy that I didn't need the additional medical insurance. I was now branded with the dreaded "pre-existing condition"designation. A couple months later, I applied for life insurance and was told that I do not qualify. Luckily, I had applied for my company's group life plan last year, so I have a little bit of coverage.
I am now going through open-enrollment at work for the next calendar year. I've signed up for my company's medical benefits so that I'll have dual coverage. I've been tracking my out-of-pocket medical costs this year, and if next year is similar to this year, I'll come out about even. If something should happen that lands me in the hospital or if my health starts to deteriorate, I'll feel better knowing I have that additional coverage in place.
There are other things like long-term disability insurance that I looked into increasing the coverage on, but after looking into it, I realized that my pre-existing condition prevents me from increasing coverage. Luckily I was enrolled in the basic company policy in December before I was diagnosed, so I still get some coverage.
I guess the lesson here really is that these things can happen to anyone and that very rarely do you expect it. Do what you can to prepare for these situations. Prepare for the worst, hope for the best.
- a little lupie -
Less than a year ago I thought I was healthy and hardly ever went to the doctor. When I started my new job in December and had to enroll for medical benefits, I declined coverage (I was covered under my husband's plan). I had been considering getting a life insurance policy but kept putting it off because I didn't really have a need for it (no dependents, no house, etc.).
On January 1, 2011, that all changed. I think the universe was playing some cruel joke on me in that I got sick on the day that my additional medical coverage would have started. January 1st is the day I got sick with what I consider my first flare and what eventually led to my lupus diagnosis.
From there, everything changed. Doctors and laboratory tests became a weekly occurrence, and I silently cursed myself for mistakingly thinking I was so healthy that I didn't need the additional medical insurance. I was now branded with the dreaded "pre-existing condition"designation. A couple months later, I applied for life insurance and was told that I do not qualify. Luckily, I had applied for my company's group life plan last year, so I have a little bit of coverage.
I am now going through open-enrollment at work for the next calendar year. I've signed up for my company's medical benefits so that I'll have dual coverage. I've been tracking my out-of-pocket medical costs this year, and if next year is similar to this year, I'll come out about even. If something should happen that lands me in the hospital or if my health starts to deteriorate, I'll feel better knowing I have that additional coverage in place.
There are other things like long-term disability insurance that I looked into increasing the coverage on, but after looking into it, I realized that my pre-existing condition prevents me from increasing coverage. Luckily I was enrolled in the basic company policy in December before I was diagnosed, so I still get some coverage.
I guess the lesson here really is that these things can happen to anyone and that very rarely do you expect it. Do what you can to prepare for these situations. Prepare for the worst, hope for the best.
- a little lupie -
Saturday, October 29, 2011
Sunsick
Headache. Nausea. Fatigue. All after half a day in the sun. Coincidence? Punishment? I'm not sure...maybe I am more photosensitive than I thought.
My workplace does a lot of community service events, which I like, but they usually always involve physical, outdoor activities. Most people like them because it let's them get out of the office, and they usually follow up by doing something "fun" like going on a hike.
As a lupie, this doesn't quite work for me, but I go along with it because it is somewhat expected for me to participate and I don't want to make things difficult. In this particular instance, the group I was with was not the folks I usually work with in my department (who know about my condition). It was a cross-functional group of folks across the organization who I don't know very well. I didn't want to bring up my condition because you never know what kind of prejudices people have, and it could be very likely that I might want to apply for a position in their department in the future. At the same time, I was feeling weak and sick trying to do yard work in the hot sun and didn't want to look like a lazy slacker. I tried to take it easy for as long as I could, but eventually had to go for a long water break. I was somewhat relieved when it started raining, sending everyone to head for shelter...at least for a while. I took on easy jobs where I could -- raking, pulling weeds, etc., but I think I probably ended up looking like a slacker.
After lunch, most of the folks went on a hike, but I declined and went home early. The hike was optional, and I wasn't the only one who didn't participate, so I didn't feel as guilty.
I got home, took a shower, and took a long nap. I woke up to a pounding headache, took some Alieve, then went back to sleep. It's now the morning after, and I feel a lot better. Not sure what I should do next time we have another outdoor activity...
- a little lupie -
My workplace does a lot of community service events, which I like, but they usually always involve physical, outdoor activities. Most people like them because it let's them get out of the office, and they usually follow up by doing something "fun" like going on a hike.
As a lupie, this doesn't quite work for me, but I go along with it because it is somewhat expected for me to participate and I don't want to make things difficult. In this particular instance, the group I was with was not the folks I usually work with in my department (who know about my condition). It was a cross-functional group of folks across the organization who I don't know very well. I didn't want to bring up my condition because you never know what kind of prejudices people have, and it could be very likely that I might want to apply for a position in their department in the future. At the same time, I was feeling weak and sick trying to do yard work in the hot sun and didn't want to look like a lazy slacker. I tried to take it easy for as long as I could, but eventually had to go for a long water break. I was somewhat relieved when it started raining, sending everyone to head for shelter...at least for a while. I took on easy jobs where I could -- raking, pulling weeds, etc., but I think I probably ended up looking like a slacker.
After lunch, most of the folks went on a hike, but I declined and went home early. The hike was optional, and I wasn't the only one who didn't participate, so I didn't feel as guilty.
I got home, took a shower, and took a long nap. I woke up to a pounding headache, took some Alieve, then went back to sleep. It's now the morning after, and I feel a lot better. Not sure what I should do next time we have another outdoor activity...
- a little lupie -
Friday, October 21, 2011
A Hit of the 'Crit
I have been feeling pretty drained for the past week or so. Even after a full night's sleep, I wake up feeling tired, and I drag throughout the day. I've found myself being more aware of rationing out my spoons for the day.
When I went to see Hemey today, I knew my blood count would be low, and it was. My hemoglobin was at 9.3, so Hemey asked me again if I wanted to try the Procrit. I have been thinking about it the past couple weeks, and the thought of actually feeling "normal" and having energy has been quite alluring. I decided to give it a try. I had to sign the consent form since Procrit is a black box drug then got a quick, painless shot in the arm. Procrit is a Erythropoiesis-Stimulating Agent (ESA) which stimulates the bone marrow to make more red blood cells. I'll need to get weekly shots, and it may be a month before I start to feel the results. I'm a little bummed because I was hoping for a quick-fix that I'd feel instantly like I did with Prednisone. I see Hemey again in three weeks, so we'll see if the Procrit starts to work for me...
- a little lupie -
When I went to see Hemey today, I knew my blood count would be low, and it was. My hemoglobin was at 9.3, so Hemey asked me again if I wanted to try the Procrit. I have been thinking about it the past couple weeks, and the thought of actually feeling "normal" and having energy has been quite alluring. I decided to give it a try. I had to sign the consent form since Procrit is a black box drug then got a quick, painless shot in the arm. Procrit is a Erythropoiesis-Stimulating Agent (ESA) which stimulates the bone marrow to make more red blood cells. I'll need to get weekly shots, and it may be a month before I start to feel the results. I'm a little bummed because I was hoping for a quick-fix that I'd feel instantly like I did with Prednisone. I see Hemey again in three weeks, so we'll see if the Procrit starts to work for me...
- a little lupie -
Friday, September 30, 2011
Hemey Update
Went for a follow-up with Hemey today...he was better today. We were at his other office location, and he didn't seem so rushed. We drew my blood to check my blood counts and they dropped again. Hemoglobin is in the 9's (normal for women is 12-16). We got a pre-authorization from my insurance company for Procrit, but I'm not ready to jump into it yet. I talked to Rheumy and he said that if I'm not sure, just wait a bit and see...if my lupus improves, my blood counts may improve too.
I was much better prepared with questions this time, and Hemey seemed more willing to address my concerns. The Procrit he would prescribe for me would be a very low dose, so he again said that there would be no side effects. I asked him about the black box warning and why the FDA would put that warning on a drug if there were no side effects. He explained that a lot of athletes use Procrit to bring their hemoglobin up to above-average levels, which makes their blood thick and can lead to heart attack, stroke, etc. Since we are not even bringing my hemoglobin up to regular levels (just up to a level to make me feel better), I wouldn't be at risk to those conditions.
I asked why we don't aim to bring me to a normal range and he said that insurance wouldn't cover it if my hemoglobin level is above 11.
I also asked again about how long I'd have to take the drugs. Hemey said that since it is caused by a lifelong condition, the therapy would be life long as well. The drug only temporarily boosts the hormone level to help the bone marrow produce red blood cells. I asked if there were any adverse effects to starting and then stopping the drug. He said no, just that I would start "dragging" again.
Hemey doesn't see my blood counts getting better since I am taking azathioprine, which he describes as a chemotherapy drug that decreases my bone marrow. Methotrexate (the other drug Rheumy gave me the option of) would have the same effect. However, taking azathioprine allows me to get off of prednisone, which has much more damaging long-term effects on the body.
Hubby was with me and asked if it would cause any damage to my organs -- kidneys, heart, etc., and Hemey said no.
I asked him if he would recommend that I take the Procrit. He said that it depends how I feel. If I feel okay, then no need to take it. If I am "dragging," he would recommend it. I explained to him that I feel tired, but I can get through the day okay. I told him it is hard for me to know what "normal" is. He concurred that a lot of patients don't really realize how much they are dragging until they take the Procrit and realize that life doesn't have to be the way they were living it.
I told Hemey that I wanted to wait and see, and he was okay with that. He said that we'll check my levels again in 3 weeks and if it drops again, he would recommend the Procrit shots. They don't seem as scary now as they did a week ago. I am feeling weak and tired, but not enough that I can't deal with it. If my hemoglobin continues to drop, I will consider starting on Procrit.
Oh, and I also got my flu shot today!
- a little lupie -
I was much better prepared with questions this time, and Hemey seemed more willing to address my concerns. The Procrit he would prescribe for me would be a very low dose, so he again said that there would be no side effects. I asked him about the black box warning and why the FDA would put that warning on a drug if there were no side effects. He explained that a lot of athletes use Procrit to bring their hemoglobin up to above-average levels, which makes their blood thick and can lead to heart attack, stroke, etc. Since we are not even bringing my hemoglobin up to regular levels (just up to a level to make me feel better), I wouldn't be at risk to those conditions.
I asked why we don't aim to bring me to a normal range and he said that insurance wouldn't cover it if my hemoglobin level is above 11.
I also asked again about how long I'd have to take the drugs. Hemey said that since it is caused by a lifelong condition, the therapy would be life long as well. The drug only temporarily boosts the hormone level to help the bone marrow produce red blood cells. I asked if there were any adverse effects to starting and then stopping the drug. He said no, just that I would start "dragging" again.
Hemey doesn't see my blood counts getting better since I am taking azathioprine, which he describes as a chemotherapy drug that decreases my bone marrow. Methotrexate (the other drug Rheumy gave me the option of) would have the same effect. However, taking azathioprine allows me to get off of prednisone, which has much more damaging long-term effects on the body.
Hubby was with me and asked if it would cause any damage to my organs -- kidneys, heart, etc., and Hemey said no.
I asked him if he would recommend that I take the Procrit. He said that it depends how I feel. If I feel okay, then no need to take it. If I am "dragging," he would recommend it. I explained to him that I feel tired, but I can get through the day okay. I told him it is hard for me to know what "normal" is. He concurred that a lot of patients don't really realize how much they are dragging until they take the Procrit and realize that life doesn't have to be the way they were living it.
I told Hemey that I wanted to wait and see, and he was okay with that. He said that we'll check my levels again in 3 weeks and if it drops again, he would recommend the Procrit shots. They don't seem as scary now as they did a week ago. I am feeling weak and tired, but not enough that I can't deal with it. If my hemoglobin continues to drop, I will consider starting on Procrit.
Oh, and I also got my flu shot today!
- a little lupie -
Thursday, September 29, 2011
Flu Shots and Lupus
It's that time of the year again...flu season. Rheumy recommends that I get the flu shot (shot, not the nasal spray). Close family members should also avoid the nasal spray because it contains a form of live virus and is not safe for anyone with an immune-compromising disorder or anyone taking an immunosuppressant medication (such as azathioprine and prednisone). While the flu shot is generally recommended for lupies, you should check with your doctor before getting any vaccines.
Here is more information about flu shots from the Lupus Foundation of America:
http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnliving.aspx?articleid=2688&zoneid=527
- a little lupie -
Here is more information about flu shots from the Lupus Foundation of America:
http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnliving.aspx?articleid=2688&zoneid=527
- a little lupie -
Tuesday, September 27, 2011
Searching For a Cure
Here is a link for anyone else who might be interested in participating (they are also looking for family members of those with lupus and for those who have no family members with lupus):
http://lupus.omrf.org/index.html
- a little lupie -
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