I haven’t found much information about the symptoms of ET other than dizziness, headache, numbness and tingling in hands and feet, fatigue. I’m sure I missed maybe one ore two more that are not listed online. This is something I have never talked in depth about with my hematologist before. I am wondering if anyone has had any other symptoms? I have always notice pain deep within my body almost down to the bone. I constantly feel like there is this radiating heat from within but my skin feels normal to the touch. The only thing I can think of to really describe it is a feeling of inflammation throughout my body. I’m constantly fatigued no matter what I do. I have been suffering chronic after affects of Covid, but my symptoms were long before this. My platelets did increase to a million at my last two visits. Had CT scan to r/o PE because I was coughing months later and with shortness of breath. I couldn’t even walk up the stairs and had to call off work several times after my second Covid vaccine the shortness of breath started subsiding a bit. I’m wondering what that was all about.
Anyway my main concern is the pain in my body. And I want to know if anyone is experiencing this as well. If so, will my Hydrea help with this? I can barely handle someone touching me. Mostly my legs are constantly throbbing. Has anyone researched NAC supplements and their effects on ET?
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Hemaeohisto13
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MPNs are at the core inflammatory disorders. There is a lot of research on this. The upregulation of the JAK-STAT pathway does more than drive hematopoiesis. It also causes the body to make too many inflammatory cytokines, This is thought to be responsible for many of the secondary symptoms we experience with MPNs. I would also note that bone pain is a MPN symptom that some experience. Your hematologist should have reviewed all of this with you.
The answer to your question about N-Acetylcysteine is yes. There is some evidence that NAC is helpful in dealing with systemic inflammation. In fact, Dr. Angela Fleischman recommends it based on her research. (see presentation below). I also deal with significant systemic inflammation, including: GERD, osteoarthritis, plantar fascitis, eczema, insomnia. I have found some things that definitely help. Note: I work with an Integrative Medicine Specialist regarding these issues. Most docs are not familiar with complementary health and how it interfaces with conventional medicine.
Here is what works for me.
1. Curcumin - this has made more difference than anything else, particularly for the osteoarthritis. Curcumin (found in turmeric) is not readily bioavailable, so the formulation you choose matters, My I-M doc recommends CurcuWin. I actually found it at WalMart in the Spring Valley brand Turmeric/Curcumin w/CurcuWin blend. Do be aware that it is mildly blood thinning.
2. L-Glutathione - NAC is the precursor for L-Glut in your body. It is the L-Glut that is the actual anti-inflammatory agent in your body per my I-M doc. She suggested just going straight to the active agent since you can take it in that form.
3. SPM Active - a fish oil derivative that concentrates the anti-inflammatory agents found in fish oil. I would consult with a doc familiar with this specific supplement if you are taking aspirin as fish oil potentiates the blood thinning of aspirin.
4. Qi Gong - I practice QI Gong (Tai Chi is one form). The gentle exercise, breathing, mindfulness are very helpful.
Regarding the hydrea (HU) that answer is maybe to helping with the secondary symptoms. It will definitely reduce hematopoiesis. Some people do find it helps with secondary symptoms. Others do not. I would be in the latter category. It did nothing for me other than reduce hematopoiesis. I do not take it anymore because I turned out to be HU-intolerant. We are each different in how we respond to HU and the other meds used to treat MPNs. It is known that Jakafi (ruxolitinib) is more effective in treating some of the secondary symptoms than HU. That would be something to review with a MPN Specialist who can better advise you on these meds.
I would note that it is worth consulting with an Integrative/Functional Medicine doc if you can find one. If you want to pursue complementary health approaches like NAC, it is important to consider how this will impact your care. If something is biologically active enough to help you, it can also hurt you and interact with other meds. Most docs do not have expertise in how complementary health interventions interact with conventional medicines. It pays to get expert consultation. I pay out-of-pocket for this. It is worth it.
This is great information! Thank you! I need to look into a MPN Specialist. When I mentioned NAC to my hematologist I got the feeling he wasn’t very knowledgeable about it. The conversations are not very much in depth and it’s more like here’s what’s going on and here’s what we should do. I find myself doing all the research in the end.
Another question, how does your Hematologist feel about you working with an Integrative Medicine Specialist? Most doctors I have known have been very dismissive towards holistic medicines
My hematologist is very supportive. Actually all of my docs have been supportive. It was my PCP who referred me to this I-M Doc when I told him I wanted to seek this care. He told me she was far more knowledgeable than he was about complimentary health interventions and how they interface with everything else. I did not ask any of the docs if I should seek this consultation. That was my decision. I always keep them up-to-date with what I am doing with all interventions. I insist that all of my docs treat me in a holistic fashion and am particularly insistent that specialists be aware of all aspects of my overall care.
Hi 😊I get deep bone pain, it's not uncommon. Fatigue and night sweats are my main other symptoms. The aching throbbing bone pain is what keeps me awake. I was diagnosed a year ago now, and started on Hydroxy. It seemed to help with the symptoms, for some time they reduced markedly. Recently though the night sweats have returned properly and the bone pain too though less so. The Hydroxy is working, my test last week was the first time platelets dropped to within the normal range. It confuses me that the symptoms are returning despite this, but I understand that this does happen to others too. Symptoms don't seem connected to platelet count but rather to the condition itself regardless of treatment.
I didn’t seem to have any symptoms initially either. Mine was also discovered during routine blood test at my annual exam several years ago but for some reason recently I have been experiencing symptoms and noticed it had become worse as time has gone on and my platelets increased. I even wondered if it was fibromyalgia but I’m thinking it’s more related to MPN
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