Hello - I suffer from Lupus. Was diagnosed following a major hip surgery and blood transfusion in 2014. I’ve had just about every miserable symptom including crippling fatigue due to auto-immune related hemolytic anemia. I was very competitive in cycling and other sports prior to this. In 2019 I made the decision to start training again with the intention of doing some road races and crits but it seems that the anemia is really affecting me from making any performance gains. My most recent FTP test was about 278 which is about 3.2 w/kg for me but what’s weird is after that I sometimes struggle with even holding 250-270W for 3-5 minutes. I do almost bi-weekly CBCs and my hemoglobin and hematocrit typically run anywhere from 9-12 mg/dl or 28-35%. A normal male my age should be 14-18 or 40-50%.
Is this fluctuation in my blood volume really impacting how well I perform? I’ve tried everything to get my numbers up and more consistent - Lifting, diet, supplements etc but just can’t seem to make any improvement. Doctors say I wouldn’t qualify for EPO or blood transfusions because my hemoglobin isn’t low enough consistently and they say it would be dangerous anyways. Im on a low maintenance dose of prednisone 5mg daily and 2g of cellcept to protect the kidneys but that’s not enough to keep my anemia in check. Is there anything I can do or can anyone suggest something I might not have tried?? I’m so hellbent on competing again but at times I feel stuck and just need to accept this disease and move on.
First, sorry that you have lupus. It’s really a terrible disease.
You specifically said autoimmune hemolytic anemia that sounds to be persistent. That means you have antibodies floating around that are destroying your RBCs—thus the need for immunosuppression with prednisone and mycophenolate. Transfusing will give you a temporary bump in RBC mass, but your hemoglobin isn’t so low that you are transfusion-dependent. Similarly, your bone marrow and kidneys are likely functioning appropriately, so you probably don’t have a production problem: EPO won’t make much of a dent.
That leaves you to solve the destruction side of the equation (the underlying cause of the anemia in the first place). Increasing your prednisone dose certainly has negative side effects, especially if you’re performance-oriented. Have you and your rheumatologist discussed adding rituximab (Rituxan) to your regimen? Typically this is the first agent added to low-dose glucocorticoids for AIHA. This decision, however, needs to be contextualized on the background of your overall lupus therapy and trajectory.
Thank you for the feedback. Yes I did a round of rituxan back in 2018. At the time I was having difficulty tapering off prednisone after being on a high dose orally for several months. Every time I got below 5 mg I’d develop painful mouth sores, I’d lose a drastic amount of weight and my hair would fall out and eventually my hemoglobin dropped to nearly below 7. It slowly climbed back up after treatment and has stayed above 9 for the most part since however it still has not climbed above 12. Eventually I was able to taper off the prednisone but I ended up back on a high dose in 2021 after a kidney flare up. At that time I did a round of chemo (cytoxan) and kidney function improved. I eventually tapered down the prednisone from 60 mg daily to 5mg daily and 2 g of cellcept daily and here I am today. I wouldn’t be opposed to doing another round of rituxan but the big question is would it be worth the cost? Would I see my hemoglobin and HCT reach the normal ranges? Treatment would likely cost at least $1500 after hitting my insurance deductible. Are there any other new Lupus treatments out there? Benlysta is one I haven’t tried but that one has been around for maybe a decade?? Another question i have is my anemia the primary cause of these crazy power output fluctuations I’m seeing? I’m sure other factors like hydration and my hip/knee injuries can affect that but I don’t really deal with pain very often these days and I tend to stay pretty well hydrated.
Hey, fellow lupus rider here.
I have mixed connective tissue disease (lupus and scleroderma) and with one of my long term use meds it affected my b12. I take injections now which also helped my blood levels. Your case is different but something to look at. Keep riding and staying positive.