Why do I have Extreme skin flushing and sweating. Have ET.

[Wewo01]

Hi All! I have ET, JAK2+. My platelets have been elevated since 2002 but my dr back then said that some people have higher platelets. As the years went on, my platelets continued to rise. It took several years to find out my Dx. I had blood in my urine that was both visible to the eye and on urinalysis. Had a cystoscope and was told by the urologist that “some people have blood in their urine”. This was in 2012. I had lots of bone and joint pain and was diagnosed with Rheumatoid Arthritis; sero-negative at that. I was put on methotrexate and hydro chloroquine. This was 2014. In 2016 another Dr took X-rays and did labs and was adamant that I did not have Rheumatoid. I was fed up! Finally, last October I was correctly diagnosed. BUT I keep forgetting to ask why my skin flushes red and I sweat so gawd awful bad every day! I feel like I cannot cool myself once outdoor temps are above 70. Anyone else experience this? Is there an association to ET? Thanks!

[Uzza]

I have Jak2 ET and all of the above flushes and sweating has increased post drop in platelet count and cessation of HU.

Cheers,

Uzza

[Wewo01 in reply to Uzza]

Thank you, Uzza!

[hunter5582]

ET is caused by a genetic mutation that deregulates the JAK-STAT pathway. The JAK-STAT pathway is a tyrosine kinase system that does more than drive hematopoiesis. It also drives immune response, hormones, and inflammation. At the core, MPNs are inflammatory disorders. Many of the secondary symptoms we experience are related to the other things the JAK-STAT pathway does.

It sounds like you are experiencing erythema (reddening of the skin) which is known to be associated with ET. Sweats are also known to be associated. Elevated levels of histamine may be one component of what is going on. Also bear in mind that microvascular events are a known issue with ET.

Regrading the arthritis, it is an inflammatory condition. The upregulation of JAK-STAT activity can cause a host of inflammatory issues. I experience: osteoarthritis, plantar fascitis, tendonitis, GERD, eczema, insomnia. All related to systemic inflammation. I am working with an Integrative Medicine specialist and have found some things that help. the biggest help of all had been finding a Curcumin formulation that works. In fact, Curcumin works better for me than Meloxicam, Ibuprofen or Lyrica.

It sounds like you really have been through the mill. This happens all to often with MPNs. They are rare conditions and most doctors know little to nothing about them. It is very important for you to consult with a MPN Specialist, not just a regular hematologist. Most hematologists do not have the KSAs to provide optimal treatment for MPNs. Here is a list of docs with MPN expertise. mpnforum.com/list-hem./

All the best to you.

[Wewo01 in reply to hunter5582]

Thank you, Hunter! I so appreciate your responses!

[Whitehair51 in reply to hunter5582]

Hunter, how common are elevated histamine levels? I was diagnosed 6 months ago with ET with a calr mutation. I'm on 1000 mg per day HU. For the past 10 weeks I have been suffering with rhinitis. I don't have a cold and don't have allergies. Nothing new has been added to my life to cause it. Could it be the ET or HU?

[hunter5582 in reply to Whitehair51]

I really do not know a specific number for people with MPNs who experience elevation in histamine. It actually has to do basophils and mast cells (both of which derive from myeloid stem cells) that can be deregulated by the MPN mutations. It is linked to symptoms like pruritis. Have not heard that it is linked to rhinitis, but I suppose it is possible, That is really a question for a MPN Specialist.

I have not heard of rhinitis linked to HU. I suppose a mild allergic rhinitis would be possible, perhaps as rare side effect. Perhaps a mild decrease in your immune response as well. You would be able to see that with depression of leukocytes I would think. Again, more questions for the MPN Specialist.

I have pretty much come to the conclusion that any inflammatory "itis" can be linked to the deregulation of the JAK-STAT pathway. at least as something that exacerbates it. And vice versa. Most any inflammation can trigger platelet production,

you have some great questions. Wish I had great answers. Please let us know what you learn. We can all benefit.

[Whitehair51 in reply to hunter5582]

Saw my hematologist yesterday. He said he had not heard of this reaction to HU but that it's possible since cells in the nose may be subject to high turnover similar to mucosal cells.

[hunter5582 in reply to Whitehair51]

That does make sense based on how Hu works. Maybe is just is an unusual adverse effect. We all respond different. HU compromised my intestinal endothelium (more cells with high turnover/DNA activity), but that is a well know adverse effect.

Hope you get it all sorted out.