- Joined
- Aug 25, 2013
- Messages
- 7
Hi all, my name's Luke, I'm 20, and I've had Crohn's since I was 9 and I've seen the worst this disease has to offer (hopefully).
I've had a swollen lymph node on my neck for the past 3 and a half years. I got it checked out when I first noticed it and my doc said not to worry, it's probably just an active immune system/common with biologics, and to keep an eye on it. Well it never really went away, though sometimes it feels smaller and sometimes it feels swollen.
I had been on remicade 4 months I think before I first noticed the node, at a dose of 5 mg/kg every 8 weeks. Over a year later I am starting college, and I notice minor symptoms returning towards the end of my cycle and my doctor recommends going down to 6 weeks. Between then and the first lymph node I noticed another node behind my ear.
A few months later I had a terrible flare, in which I am still recovering weight from, and I still have some pain every day. Prednisone didn't seen to help much this time around. Well, my doc upped my dosage to 7.5 mg/kg every 6 weeks, and this seemed to help and I began slowly regaining my quality of life. Medical cannabis was my savior during this period in my life, and was the only way I could keep any kind of normal appetite/ digestion. But even though I improved, at some point in the next year and a half I stopped improving, and symptoms started to return with a vengeance near the end of my cycle.
At the point when my symptoms were becoming more frequent and seriously detrimental to living, I told my doctor I need to test my body's immune response to the medicine, and obviously results showed my body has a strong immune system that wants my infusions crushed! Bummer, I know, but things got better. This past summer I switched to a Crohn's specialist involved in research at UVA, and he helped me get much better by upping my dose to 10 mg/kg every 4 weeks and introducing methotrexate injections weekly. Since then I have been feeling stellar! Gained 20 lbs, have loads more energy, and pain is hardly worth noticing compared to what I've experienced. This is great and I am happier, but honestly it is too soon to know that this new course of treatment is really working and only time will tell if my immune system wins the war against remicade.
So why I've wrote all of that is because recently, I was concerned to notice a new lymph node, hugely swollen at first, under my jaw. I can still feel it, and all of the other ones, which is worrying. Haven recently been put on an additional immunomodulator, I have researched and become more aware of the notable risk of cancer/infection with the drugs I'm on, specifically lymphoma. Crohn's is manageable because the pain and embarrassment can be dealt with, and it is not a mortal disease, but cancer genuinely scares me. I have family members who've died of and beaten cancer, and know plenty of others who have battled it.
I know swollen lymph nodes are somewhat common with immuno-modulating/-depressing drugs, but I know this could possibly be the beginning signs of something serious. It also could be simply that my immune system is only fighting hard to get my meds out, leading to swelling. I plan on letting my doc know at our next meeting, but I also wanted to know if anyone else has dealt with a situation similar to this? Thanks for reading and please post your experience with swollen lymph nodes.
Also, my swollen lymph nodes are exclusively on the right side of my body.
I've had a swollen lymph node on my neck for the past 3 and a half years. I got it checked out when I first noticed it and my doc said not to worry, it's probably just an active immune system/common with biologics, and to keep an eye on it. Well it never really went away, though sometimes it feels smaller and sometimes it feels swollen.
I had been on remicade 4 months I think before I first noticed the node, at a dose of 5 mg/kg every 8 weeks. Over a year later I am starting college, and I notice minor symptoms returning towards the end of my cycle and my doctor recommends going down to 6 weeks. Between then and the first lymph node I noticed another node behind my ear.
A few months later I had a terrible flare, in which I am still recovering weight from, and I still have some pain every day. Prednisone didn't seen to help much this time around. Well, my doc upped my dosage to 7.5 mg/kg every 6 weeks, and this seemed to help and I began slowly regaining my quality of life. Medical cannabis was my savior during this period in my life, and was the only way I could keep any kind of normal appetite/ digestion. But even though I improved, at some point in the next year and a half I stopped improving, and symptoms started to return with a vengeance near the end of my cycle.
At the point when my symptoms were becoming more frequent and seriously detrimental to living, I told my doctor I need to test my body's immune response to the medicine, and obviously results showed my body has a strong immune system that wants my infusions crushed! Bummer, I know, but things got better. This past summer I switched to a Crohn's specialist involved in research at UVA, and he helped me get much better by upping my dose to 10 mg/kg every 4 weeks and introducing methotrexate injections weekly. Since then I have been feeling stellar! Gained 20 lbs, have loads more energy, and pain is hardly worth noticing compared to what I've experienced. This is great and I am happier, but honestly it is too soon to know that this new course of treatment is really working and only time will tell if my immune system wins the war against remicade.
So why I've wrote all of that is because recently, I was concerned to notice a new lymph node, hugely swollen at first, under my jaw. I can still feel it, and all of the other ones, which is worrying. Haven recently been put on an additional immunomodulator, I have researched and become more aware of the notable risk of cancer/infection with the drugs I'm on, specifically lymphoma. Crohn's is manageable because the pain and embarrassment can be dealt with, and it is not a mortal disease, but cancer genuinely scares me. I have family members who've died of and beaten cancer, and know plenty of others who have battled it.
I know swollen lymph nodes are somewhat common with immuno-modulating/-depressing drugs, but I know this could possibly be the beginning signs of something serious. It also could be simply that my immune system is only fighting hard to get my meds out, leading to swelling. I plan on letting my doc know at our next meeting, but I also wanted to know if anyone else has dealt with a situation similar to this? Thanks for reading and please post your experience with swollen lymph nodes.
Also, my swollen lymph nodes are exclusively on the right side of my body.
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