Jak2 positive, bone marrow biopsy, eczema, ultrasound

[margaritampn]

Jak 2 positive. Diagnosed with MPM and just had my bone marrow biopsy last week, Monday. Also saw a dermatologist because I have severe eczema. Like i look a dalmatian dog because of all the spots all over my body. I also had an ultrasound last Friday.

Tomorrow, I will be seeing my hematologist to discuss my results. Pretty nervous and do not know what to expect. I am of course hoping for good news. What were your results after your bmb and ultrasound?

Also, any of you have severe eczema? I was scratching so hard the other night that I was crying so bad because the itch won’t go away. My dermatologist said it is severe eczema and does not need a skin biopsy as recommended by my hematologist. Instead, he prescribed me some prednisone.

[ladyanello]

Itching, on a spectrum from mild to very severe, is a complication of many with Polycythemia Vera. It is horrible and I'm so sympathetic to your plight. If you have an MPN, make sure your hematologist is well versed in the disease, most have never treated an MPN so a specialist is critical, especially with that itching. I would also do what my hematologist suggests, or at least ask more specifically why a skin biopsy is necessary. The bmb will give a lot of information to your doctor.

[hunter5582]

Yes to eczema, though not as severe as what you describe. I have a JAK2+ PV with a mutant allele burden of 26%. I also have the NF1:c5425C>T mutation (Neurofibromatosis Type 1) but no other relevant non-driver MPN mutations. I am fortunate in that my MPN is relatively indolent. I was diagnosed with a MPN about 30 years ago. I have actually had more trouble with the secondary symptoms. Never a single incident of thrombosis.

The key to understanding MPNs is to know that at the core MPNs are inflammatory disorders. The deregulation of the JAK-STAT pathway does more than increase hematopoiesis (blood cell production). It also drives up the production of inflammatory cytokines, driving systemic inflammation and many of the secondary symptoms people with MPNs experience. controlling systemic inflammation can help with many inflammation related symptoms (e.g. osteoarthritis). I have found Curcumin very helpful for this purpose.

Regarding the eczema, I have also found very effective treatment and prevention. For outbreaks, I use Eucrisa (crisaborole) . It is a PDE4 inhibitor and it works amazingly well. It stops outbreaks dead in their tracks. However, prevention is the key. Maintaining a healthy skin moisture barrier is vital. I stopped using all body soaps. I only use ceramide-based cleansers. I also uses a ceramide cream on all affected areas twice/day. I eliminated all scent/dyes from laundry products and am selective about what fabrics I wear. Those prevention measures greatly reduced outbreaks. The Eucrisa takes care of the rest.

Hope that helps.