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 -
Friday, September 30, 2011
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 -
Thursday, September 22, 2011
Procrit
Hemey got my lab work back and concurred with what Rheumy suspected -- anemia of chronic disease. He said that my hemoglobin levels increased slightly but that my white blood cell count was still low. The low hemoglobin is probably what is causing me to feel weak and tired all the time. He said that I could take Procrit shots if I feel like I am dragging, and that it would stimulate my bone marrow to create more red blood cells.
I'm sad to say this, but I am not too impressed with Hemey. He does not explain things well. He asked me if I had heard of Procrit and when I said no, he just told me what I said above (oh, and that it was a highly abused drug by athletes) and then wanted me to decide whether or not I wanted to take it. I had to prod him to tell me more about it and when I asked about side effects, he said "at your levels, there are none." I don't know, I find that kind of hard to believe, especially because he mentioned that this medication fell under FDA's "black box warning" and I'd need to sign a consent form to take it. I wasn't sure what this meant, so when I Googled it when I got home, and I saw that this label indicates that the drug carries significant risk of serious of life-threatening adverse effects. Scary! And Hemey made it sound like it was nothing! When I asked him how long I would need to take the shots, he said it would be weekly forever. To me, this sounds not only inconvenient, but pretty serious if it is something I'd need to do for the rest of my life. To Hemey, he just saw it as "but it would only take 5 min, and you wouldn't have to see me every time...just come in to get the shot and leave." He said they wouldn't aim to bring my hemoglobin levels back up to normal, but just high enough to make me feel better. When I asked if there were any other options, he said no. It was too hard for me to make a decision based off of the information he told me, so I said I'd need to think about it (meaning I'd have to go do my own internet research -- and I wanted to talk to Rheumy to see what he thinks too).
In the mean time, Hemey printed out an information sheet for me to read and is going to find out what the insurance guidelines say to see if they would even cover me. Normal hemoglobin levels for adult women are between 12-16 gm/dl. My last blood test was around 10, and prior to that I was around 8-9. I guess at a level of 10 some insurance companies don't think it is necessary, so they won't cover the cost of it (it is expensive). If insurance won't cover me, I probably wouldn't do it. If it would be fully covered, I'm not sure what I would do. On one hand, the weakness and tiredness I feel is becoming my "normal" and just something I deal with every day. It is the thought of the possibility of having more energy and being able to do things that makes me wonder if I should give it a try. Anyone have any experience or thoughts to share?
- a little lupie -
I'm sad to say this, but I am not too impressed with Hemey. He does not explain things well. He asked me if I had heard of Procrit and when I said no, he just told me what I said above (oh, and that it was a highly abused drug by athletes) and then wanted me to decide whether or not I wanted to take it. I had to prod him to tell me more about it and when I asked about side effects, he said "at your levels, there are none." I don't know, I find that kind of hard to believe, especially because he mentioned that this medication fell under FDA's "black box warning" and I'd need to sign a consent form to take it. I wasn't sure what this meant, so when I Googled it when I got home, and I saw that this label indicates that the drug carries significant risk of serious of life-threatening adverse effects. Scary! And Hemey made it sound like it was nothing! When I asked him how long I would need to take the shots, he said it would be weekly forever. To me, this sounds not only inconvenient, but pretty serious if it is something I'd need to do for the rest of my life. To Hemey, he just saw it as "but it would only take 5 min, and you wouldn't have to see me every time...just come in to get the shot and leave." He said they wouldn't aim to bring my hemoglobin levels back up to normal, but just high enough to make me feel better. When I asked if there were any other options, he said no. It was too hard for me to make a decision based off of the information he told me, so I said I'd need to think about it (meaning I'd have to go do my own internet research -- and I wanted to talk to Rheumy to see what he thinks too).
In the mean time, Hemey printed out an information sheet for me to read and is going to find out what the insurance guidelines say to see if they would even cover me. Normal hemoglobin levels for adult women are between 12-16 gm/dl. My last blood test was around 10, and prior to that I was around 8-9. I guess at a level of 10 some insurance companies don't think it is necessary, so they won't cover the cost of it (it is expensive). If insurance won't cover me, I probably wouldn't do it. If it would be fully covered, I'm not sure what I would do. On one hand, the weakness and tiredness I feel is becoming my "normal" and just something I deal with every day. It is the thought of the possibility of having more energy and being able to do things that makes me wonder if I should give it a try. Anyone have any experience or thoughts to share?
- a little lupie -
Tuesday, September 20, 2011
Rheumy
I had a pretty uneventful visit with Rheumy on Saturday. Blood counts are still low, but we're waiting to hear back from Hemey about that. Other than that, I have been doing pretty well so we decided to stop the prednisone (yay!) and my next appointment won't be for another 2 months (double yay!). The azathioprine has been giving me some tummy/digestive issues, but when Rheumy asked if I wanted to stop taking it, I said not if it is working. So, I'll put up with it for now...it's a lot better than the pain I was dealing with before.
- a little lupie -
- a little lupie -
Friday, September 16, 2011
CSI: Hemey
I went to see my new Hematologist (Hemey) yesterday. After waiting in his waiting room for about an hour, I finally got called to the back to see him. They had some word puzzles posted on the wall, which makes me think that long waits are not unusual around there.
After solving most of the puzzles, Hemey finally came in and introduced himself. He explained that Rheumy had sent me to him to help discover the cause of my anemia. He asked me about my lupus, when it started, what I experienced, and what medications I was taking. He also had copies of my labwork. He said that they would run more tests to get to the cause of my anemia, but he thinks it could be due to:
1) Lupus
2) Hypothyroidism - he noted that my thyroid levels look low, and he was surprised that my medication dosage had actually gone down in the past six months. He decided to run some tests to check my TSH levels again.
3) the Azathioprine (Imuran) medication I am taking - he explained that it is a chemotherapy drug used to treat cancer patients and that it could also cause anemia.
He said that this was like detective work and that they would need to keep running tests to narrow down the possibilities. Once they found the cause of the anemia, hopefully they will be able to do something to fix it. An example he gave was that if he found the cause to be that my body wasn't producing enough of the hormone needed for red blood cell production, he could give me a hormone supplement to help.
He sent me to his lab to get blood drawn and scheduled me for a follow-up appointment next week. Hopefully we'll be closer to figuring this all out!
- a little lupie -
After solving most of the puzzles, Hemey finally came in and introduced himself. He explained that Rheumy had sent me to him to help discover the cause of my anemia. He asked me about my lupus, when it started, what I experienced, and what medications I was taking. He also had copies of my labwork. He said that they would run more tests to get to the cause of my anemia, but he thinks it could be due to:
1) Lupus
2) Hypothyroidism - he noted that my thyroid levels look low, and he was surprised that my medication dosage had actually gone down in the past six months. He decided to run some tests to check my TSH levels again.
3) the Azathioprine (Imuran) medication I am taking - he explained that it is a chemotherapy drug used to treat cancer patients and that it could also cause anemia.
He said that this was like detective work and that they would need to keep running tests to narrow down the possibilities. Once they found the cause of the anemia, hopefully they will be able to do something to fix it. An example he gave was that if he found the cause to be that my body wasn't producing enough of the hormone needed for red blood cell production, he could give me a hormone supplement to help.
He sent me to his lab to get blood drawn and scheduled me for a follow-up appointment next week. Hopefully we'll be closer to figuring this all out!
- a little lupie -
Sunday, September 11, 2011
Too Many Pills
I know some people have had success with a naturalistic/holistic approach to treating lupus, but I don't know if I'm ready to try that route yet. Seeing all of these pills certainly makes me think about it, though. I really hate to rely on pills for the rest of my life.
I'm also collecting quite a nice supply of orange bottles in my medicine cabinet. I feel bad throwing them away, but I'm not really sure what to do with them. Any ideas? I feel like they would be useful for something...craft supplies, maybe?
Tuesday, September 6, 2011
No News
In lupie world, no news is good news. Things have been pretty uneventful healthwise, which is a good thing. I still haven't had any joint pain since starting the azathioprine. I have an appointment set up with my new Hemey on the 15th then another Rheumy appointment on the 17th. If I need to do blood tests for Hemey, I'm going to see if I can consolidate them with my normal Rheumy blood tests to save myself a couple vials of blood.
- a little lupie -
- a little lupie -
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