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 -
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 -
Monday, August 29, 2011
To Tell or Not To Tell...
When I first got diagnosed with lupus, there was the question of whether or not to share the information with my co-workers. I probably didn't think through it as much as I should have, but since I was out of work for 2 weeks, they were concerned about me, and I decided to tell them about my diagnosis. Part of my decision was because I knew I'd have to take additional time off for frequent doctor visits and in case I started flaring. I've only shared the information with the 6 others in my immediate work group, and I'm very lucky that they've been very understanding. It turns out that 1 of the 6 also has lupus, so we're able to relate on some level. The culture of my organization is also one that puts a high emphasis on personal well-being and family. I'm also very lucky to work in a flexible work environment which allows me to work flex hours and work from home if needed.
I know that the decision to share this kind of information with your co-workers is a very personal one and can depend on a number of factors. I know other lupies have not been as lucky as I have been. Often times others do not understand lupus, and because it is a disease in which you don't LOOK sick, many times people don't realize when you are in pain or fatigued. I'll admit that before I experienced fatigue, I didn't understand it and how it is different than just being tired or lazy. Sometimes co-workers can resent that you need to take so much time off from work or that you can't function at 100% due to the lupus fog.
I don't want lupus to be an excuse for why I can't do things, but I guess I'm hoping it will serve as some kind of explanation as to why I may need to take it slower sometimes...and I think that is something that everyone should do, lupus or not.
- a little lupie -
I know that the decision to share this kind of information with your co-workers is a very personal one and can depend on a number of factors. I know other lupies have not been as lucky as I have been. Often times others do not understand lupus, and because it is a disease in which you don't LOOK sick, many times people don't realize when you are in pain or fatigued. I'll admit that before I experienced fatigue, I didn't understand it and how it is different than just being tired or lazy. Sometimes co-workers can resent that you need to take so much time off from work or that you can't function at 100% due to the lupus fog.
I don't want lupus to be an excuse for why I can't do things, but I guess I'm hoping it will serve as some kind of explanation as to why I may need to take it slower sometimes...and I think that is something that everyone should do, lupus or not.
- a little lupie -
Tuesday, August 9, 2011
Anemia Blood Tests
I got a copy of my blood test results in the mail today, so I have a little more detail on what tests Rheumy ran. Once again, I had to do some research to understand what each of these tests were for and how to interpret the results. I have found labtestsonline.org to be a great source of information. They do a great job of explaining why a certain lab test is done, the background behind how the body functions, and what the results mean. I gave a brief overview below, but you can click on the links to get a lot more detailed information.
Haptoglobin
Haptoglobin testing is used primarily to help detect and evaluate hemolytic anemia and to distinguish it from anemia due to other causes; however, it cannot be used to diagnose the cause of the hemolysis.
Hemolytic Anemia occurs when the red blood cells (RBC) are destroyed by the body prematurely. The average RBC lives in the blood for about 4 months. With Hemolytic Anemia, this can be shortened to just a few days. The bone marrow is not able to produce new RBCs quickly enough to replace those that have been destroyed, leading to a decreased number of RBCs in the blood, which in turn leads to a diminished capacity to supply oxygen to tissues throughout the body. This type of condition can be inherited (e.g. Sickle Cell Anemia) or acquired (possibly as a result of an autoimmune disease, such as lupus).
When haptoglobin levels are decreased, along with an increased reticulocyte count and a decreased RBC count, hemoglobin, and hematocrit, then it is likely that you have some degree of hemolytic anemia.
My haptoglobin levels were in the normal range, so I likely do not have hemolytic anemia.
Iron/TIBC/Ferritin
This set of tests is often ordered to differentiate between different types of anemia (a condition that occurs when the level of Red Blood Cells (RBC) and/or Hemoglobin in the blood are decreased).
The Serum Iron test measures the amount of iron in the blood. The Total Iron Binding Capacity (TIBC) test is used to assess your body's ability to transport iron in the blood. These two tests allow the transferrin Saturation to be calculated. Transferrin Saturation reflects the amount of iron being transported in the blood and its capacity to carry more. The Ferritin test is used to determine your body's total iron storage capacity.
A summary of the changes in iron tests seen in various diseases of iron status is shown in the table below.
Based on my results, rheumy thinks it may be Anemia due to Chronic Illness.
- a little lupie -
Haptoglobin
Haptoglobin testing is used primarily to help detect and evaluate hemolytic anemia and to distinguish it from anemia due to other causes; however, it cannot be used to diagnose the cause of the hemolysis.
Hemolytic Anemia occurs when the red blood cells (RBC) are destroyed by the body prematurely. The average RBC lives in the blood for about 4 months. With Hemolytic Anemia, this can be shortened to just a few days. The bone marrow is not able to produce new RBCs quickly enough to replace those that have been destroyed, leading to a decreased number of RBCs in the blood, which in turn leads to a diminished capacity to supply oxygen to tissues throughout the body. This type of condition can be inherited (e.g. Sickle Cell Anemia) or acquired (possibly as a result of an autoimmune disease, such as lupus).
When haptoglobin levels are decreased, along with an increased reticulocyte count and a decreased RBC count, hemoglobin, and hematocrit, then it is likely that you have some degree of hemolytic anemia.
My haptoglobin levels were in the normal range, so I likely do not have hemolytic anemia.
Iron/TIBC/Ferritin
This set of tests is often ordered to differentiate between different types of anemia (a condition that occurs when the level of Red Blood Cells (RBC) and/or Hemoglobin in the blood are decreased).
The Serum Iron test measures the amount of iron in the blood. The Total Iron Binding Capacity (TIBC) test is used to assess your body's ability to transport iron in the blood. These two tests allow the transferrin Saturation to be calculated. Transferrin Saturation reflects the amount of iron being transported in the blood and its capacity to carry more. The Ferritin test is used to determine your body's total iron storage capacity.
A summary of the changes in iron tests seen in various diseases of iron status is shown in the table below.
| Disease | Iron | TIBC/Transferrin | UIBC | Ferritin | |
| Iron Deficiency | Low | High | High | Low | Low |
| Hemochromatosis | High | Low | Low | High | High |
| Chronic Illness | Low | Low | Low/Normal | Low | Normal/High |
| Hemolytic Anemia | High | Normal/Low | Low/Normal | High | High |
| Sideroblastic Anemia | Normal/High | Normal/Low | Low/Normal | High | High |
| Iron Poisoning | High | Normal | Low | High | Normal |
Based on my results, rheumy thinks it may be Anemia due to Chronic Illness.
- a little lupie -
Monday, August 8, 2011
Hemey
When I last saw Rheumy, my blood count was not improving, so he wanted to make sure that the lupus was not attacking the red blood cells. He ran a few more tests and just called to say that the results came back okay. He thinks it may just be anemia of chronic disease, meaning that the lupus is affecting my body's ability to produce red blood cells. When my lupus symptoms improve, my anemia should improve. To be sure, he is setting me up with a hematologist (which I will nickname "Hemey").
- a little lupie -
- a little lupie -
Saturday, August 6, 2011
Another Rheumy Day
Went to see Rheumy today. My white blood cell count is back to the normal range, so it looks like the azathioprine is helping. My red blood cell count, however, is still low. Since my other lupus symptoms seem to be getting better (still no joint pain!), Rheumy is going to run some other blood tests to see if my anemia could be because of something other than lupus. I remember being told I was slightly anemic when I first got diagnosed with hypothyroidism about ten years ago, so there's a good chance it may be due to something else. We just want to make sure it is not the lupus attacking my red blood cells. We should get the blood test results back around Wednesday, then we'll see if I need to go see a hematologist.
I also mentioned to Rheumy that when I stand up after sitting or laying down for a while, I get lightheaded and can't see for a couple seconds. It is something I have always experienced occasionally, but I have noticed it a lot more recently. Rheumy said that when you are laying down or sitting, your blood pressure is lower because your body doesn't have to fight as much gravity. When you stand up, the nerves in your body help to raise your blood pressure so that it can get the blood up to your brain. With lupus, sometimes these nerves don't work right. We will see what my blood test results are, and see a hematologist if necessary. If everything is okay and I am still experiencing this, I may need to see a neurologist.
Other than that, he said I am doing well. We're dropping my prednisone down to 1 mg and I don't have to go back to see him for six whole weeks! Looks like I graduated to the next level! :)
- a little lupie -
I also mentioned to Rheumy that when I stand up after sitting or laying down for a while, I get lightheaded and can't see for a couple seconds. It is something I have always experienced occasionally, but I have noticed it a lot more recently. Rheumy said that when you are laying down or sitting, your blood pressure is lower because your body doesn't have to fight as much gravity. When you stand up, the nerves in your body help to raise your blood pressure so that it can get the blood up to your brain. With lupus, sometimes these nerves don't work right. We will see what my blood test results are, and see a hematologist if necessary. If everything is okay and I am still experiencing this, I may need to see a neurologist.
Other than that, he said I am doing well. We're dropping my prednisone down to 1 mg and I don't have to go back to see him for six whole weeks! Looks like I graduated to the next level! :)
- a little lupie -
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