Exploring the Link Between Myelofibrosis and CD38: Thoughts on Recent Findings
Greetings! I’m a 41-year-old male diagnosed with low-risk, asymptomatic Myelofibrosis (MF) driven by MPL mutations. I have an excellent hematologist and am well-connected with experts and research networks focusing on MPN across the globe. My current treatment plan is solid. Recently, I came across a study released approximately three weeks ago discussing a potential correlation between MF and a new drug being developed for Systemic Lupus Erythematosus (SLE). This isn’t the first time I’ve encountered suggestions of a link between these two conditions, so I figured it would be worthwhile to gauge interest on this matter. **Inquiry:** Do you think it’s worthwhile to investigate the synergy of measuring CD38 levels alongside administering mezagitamab (or a similar agent) to potentially control or halt the advancement of fibrosis? Are there more effective (cost-efficient and quicker) alternatives for assessment? I want to clarify that I am not soliciting input on whether this is a cure—it's definitely not! Research over the past year indicates that merely preventing fibrosis progression doesn’t adequately address the overall disease trajectory (it fails to restore the microenvironment). My question strictly pertains to the progression of fibrosis, which is merely a characteristic of this illness. **Study (March 2025):** [Link to study](https://doi.org/10.1101/2025.03.02.639410) **Earlier Research (November 2024):** [Link to study](https://doi.org/10.1182/blood-2024-202529) Here are what I consider the key facts: * In human patients with MPN, particularly those affected by MF, there is a notable increase in CD38 expression in CD14⁺ monocytes, particularly in those with fibrosis. * The expression of CD38 can be altered through pharmacological means in humans. * Interestingly, the repercussions of CD38 overexpression can be modified through NAD precursor supplementation in mouse studies, though this isn't the core of my question. Additionally, for those interested in another intersection between SLE and MF: secretory autophagy and the use of hydroxychloroquine (HCQ). A recent preprint from Harvard has shown that mutant megakaryocytes engage in secretory autophagy of TGF-b. In mouse models, applying various treatments, including HCQ, has shown a reduction in MF characteristics. Paper: [Link to study](https://doi.org/10.1101/2024.12.04.626665) Last night, I jokingly asked my wife if I potentially have what I playfully termed “lupus of the bones.” She recommended that I seek advice from AskDocs, so here I am!
Answers (1)
4/4/2025, 5:40:48 PM
OpenHealth AI
It's great to see your proactive approach toward understanding your condition and exploring recent research findings. Given your low-risk, asymptomatic Myelofibrosis (MF) and your academic engagement, let's address your inquiry about the potential link between CD38 levels, mezagitamab, and fibrosis progression.
Main Points:
- There is emerging evidence suggesting a correlation between CD38 expression and the progression of fibrosis in Myelofibrosis.
- Considering CD38 levels alongside treatments targeting this pathway, like mezagitamab, could be worth investigating.
- There may be effective, cost-efficient methods for assessing CD38 levels, although specific details would depend on your healthcare context.
Explanation:
CD38 is an enzyme known to play a role in various immune processes and has been noted to have increased expression in certain hematopoietic conditions, including Myelofibrosis. Your interest in the relationship between CD38 modulation and fibrosis progression is timely, especially with new insights into treatments that affect this pathway. The recent research pointing to the pharmacological alteration of CD38 and its implications for fibrosis suggests a potential area for therapeutic exploration.
However, measuring CD38 levels reliably and utilizing these results for clinical decisions can vary in feasibility and cost-effectiveness depending on your access to specialized labs and tests. It’s essential to consider how practical these assessments might be in your situation.
Next Steps:
-
Discuss with Your Hematologist: Engage your hematologist on the findings you've come across. They are best positioned to advise on the implications of measuring CD38 levels in your treatment planning.
-
Request Specific Tests: If deemed relevant, ask about the possibility of measuring CD38 levels in your blood samples. Your hematologist may know the most efficient way to assess this without incurring significant costs.
-
Stay Informed: Continuously monitor new research studies focused on the CD38-MF relationship. Collaborating with your research network can keep you updated on potential clinical trials or novel treatments.
-
Symptom Monitoring: Continue to manage your health proactively by keeping track of any changes in symptoms or any new insights you gather from your discussions and research.
-
Clinical Trials: Consider inquiring about ongoing clinical trials related to fibrosis treatment mechanisms and potential new therapies targeting CD38, as this could provide broader options for managing your condition.
Your curiosity and proactive research are commendable, and by discussing these details with your healthcare team, you can stay informed about any evolving treatment strategies that might be beneficial for you.
Related Questions
Concerns About My Toes
Age: 30, Female Currently, I am on the lookout for a reputable podiatrist in my vicinity. However, I've encountered a perplexing issue with my foot. Just last night, I noticed a growth on the side of my toe, something entirely new to me. I maintain a nutritious diet and have a demanding job that requires me to be on my feet quite often. My footwear includes brands such as Brooks Ghost Runners, Hoka Bondi 9’s, and Nike Motiva’s, and I don’t opt for restrictive socks. I also apply Vick’s Vaporub to my feet, a practice handed down from my family, and stick with simple, non-fragrant lotions like Vanicream and CeraVe SA Cream for my skin. In addition, I am curious about the my big toenail's change in color. What might be the underlying reasons for this? Also, I have these persistent dark spots on my toes that I've struggled with since my days on the runway. Despite my efforts, nothing has succeeded in lightening or diminishing their appearance. I'm just looking to determine if there might have been a factor from the past that could have contributed to these issues. I’m not sure what else to include, but I’m open to answering any questions you might have. Thank you for your attention! Best wishes from a worried soul!
Strange Jelly-Like Substance Observed from Wound
I’m a 21-year-old female living with an auto-inflammatory condition known as hidradenitis suppurativa (HS). Recently, I've experienced a concerning issue with one of my wounds. This particular wound causes significant pain and excessive bleeding. However, whenever I attend to it, I tend to find this unusual jelly-like substance present within it. Interestingly, this phenomenon has only occurred with this one wound and not any of the others I have. The bleeding seems to persist until I manage to remove this jelly substance, after which it typically slows down and comes to a halt completely. I’m seeking insights into what this might signify so that I can effectively discuss it with my healthcare provider.
Battling Chronic Nausea and Vomiting for Over Two Years
For the past two years, I (age 26, female) have been enduring an incredibly challenging health situation. I experience intense nausea daily and find myself vomiting numerous times, with almost nothing providing relief. To provide some background, I’m from West Texas and I currently weigh around 190 pounds, standing at 5’7”. Initially, my weight was about 211 pounds when these symptoms began, and it fluctuates frequently between 190 and 225 pounds. I engage in vaping and consume THC. Previously diagnosed with hypothyroidism, my condition seemingly resolved, according to my healthcare providers. Additionally, I have polycystic ovarian syndrome (PCOS). I have consistently faced irregular bowel movements, with stools that are loose and sometimes appear to have mucus. Compounding my struggles, I've also suffered from migraines. I have had an IUD for over five years, experiencing two insertions of the Kyleena device. In December 2022, my battle with health took a severe turn when I was diagnosed with stage 4 Hodgkin’s Lymphoma, requiring chemotherapy treatment, specifically AVBD (Apologies for not recalling the exact medication names). By July 2023, I had fortunately achieved remission. However, after reaching remission, my vomiting worsened, transforming from primarily white foam to a mixture of 80% bile, any food I attempt to consume, and still white foam. This intense vomiting, accompanied by significant pain in my upper back, escalated to more than eight episodes daily by November 2023. At that time, THC seemed to be the only avenue for me to retain any food. During this tumultuous period, I consulted various doctors who, after confirming I wasn’t pregnant, attributed my symptoms to Cannabinoid Hyperemesis Syndrome (CHS). Immediately, I ceased THC consumption for over six months, yet the vomiting continued unabated. Each time, doctors would prescribe ondansetron, regardless of my claims that it provided no relief. I experimented with various diets recommended by medical professionals, but there were no improvements in my condition. Eventually, I obtained a referral to a gastroenterologist who intended to perform an endoscopy. However, the procedure was prohibitively expensive even with insurance, and thus was never conducted. This doctor also ordered blood tests to rule out several gastrointestinal disorders, such as Crohn's disease, Irritable Bowel Syndrome (IBS), and gluten sensitivity, but all results came back normal. Afterward, I had another appointment with a different gastroenterologist, but the doctor failed to meet with me. Instead, a nurse informed me that the doctor had merely recommended promethazine without conducting any tests or scheduling further visits. When I mentioned the possibility of gallbladder issues, the doctor laughed dismissively at my suggestion. Discussing my situation with my oncologist, he suggested that my heightened sensitivity to food odors stemmed from my chemotherapy experiences while I was working in fast food. While food smells indeed affect me, I'm primarily triggered by medical scents such as rubbing alcohol and cleaning agents. This ongoing ordeal has been overwhelmingly distressing. I now experience episodes of vomiting accompanied by bright red blood, presumably due to a throat tear. When I first encountered this troubling symptom, I consulted a doctor who appeared unfazed and prescribed a promethazine suppository, which does help but makes me extremely drowsy. My nausea persists nearly around the clock, often feeling as if there’s a heaviness in the upper part of my abdomen. I frequent urgent care facilities when my symptoms intensify, only to be met with minimal assistance since this is a chronic issue. Currently, I lack a primary care physician. Whenever I sought one, I encountered skepticism regarding my condition, with some healthcare professionals implying that I was exaggerating my symptoms. Though many physicians who do take my situation seriously seem baffled, I've lost count of the diverse medical experts I've consulted about these ongoing issues. If anyone has insight or suggestions, I would genuinely appreciate it. I can share my latest bloodwork results if that would be helpful—just let me know!
Strange Stomach Sensation Leading to Waking Up
Greetings. I'm a 36-year-old male, standing at 172 centimeters and weighing 90 kilograms. I don't take any medications, nor do I smoke. I've been living with diastasis recti for several years now, and I may also have irritable bowel syndrome (IBS). Additionally, I deal with fatty liver and kidney stones, though I assume these last two conditions are not related to my current concern. Occasionally, I experience a peculiar sensation that jolts me awake; it feels like a quick pulsing in my stomach. I’ve noticed it tends to affect the left side when I’m lying on my left side and the right side when on my right. Remarkably, it can occur even when I’m on my back. This strange feeling often escalates into a surge that fully rouses me. Alongside this, I sometimes feel prickling sensations throughout my body and fleeting lightheadedness. When this sensation disturbs my sleep while I’m turned to my side, shifting onto my back or the opposite side might alleviate it, but not always. In instances where I awaken while lying on my back, I discovered that gently pressing my hands on either side of my stomach can help, as can rising to a sitting or standing position. However, during my last two episodes—one a couple of weeks ago and another tonight—those techniques weren’t effective right away, which made me feel a bit anxious, prompting me to seek advice. Does anyone have insight into what might be going on? By the way, I’ve undergone routine ultrasound examinations of my abdomen by two different physicians during check-ups, both of whom assured me that everything appears normal, including my abdominal aorta and internal organs. They didn’t identify any issues at that time.
Swelling Beneath My Chin Near the Jawline
18-Year-Old Male: I'm reaching out to any medical professionals who might provide insights into my situation. I've been using marijuana since I was 14, but now, at 17, I'm making an effort to stop and have been clean for 18 days. Recently, I've discovered an unusual swelling located just beneath my chin, behind my jaw. It causes some discomfort when I move, yet it doesn’t feel painful continuously. I'm somewhat anxious that this could be indicative of a more serious issue, especially considering it's positioned near my chin's lymph nodes. Any advice or information would be greatly appreciated as it might help alleviate my worry.