Question For Hunter

[Bikelove]

Hi,

This is my first post. I had my second bone marrow biopsy today, hoping to get a specific diagnosis of which MPN I have. I saw a hematologist first, then a second one for a 2nd opinion. They both diagnosed me with ET Jak2.

I have 2 autoimmune diseases, Sjogren’s and Hashimotos also, so I posted about the ET on “Smart Patients” an online support group for autoimmune diseases. One of the patients on that website informed me of this MPN website and I found your very helpful and informative posts. So, first I want to Thank you for all the help provide to everyone on this site. Second, I’m trying to find the list of MPN specialists you posted a while back where I found my current doctor at Weill Cornell in NYC.

I would like to find a different doctor to continue with and tried to find the lists you posted, but I failed to find them.

Would you mind terribly posting them again? This time I will not loose them!

Thank you!

Best,

Susan

[hunter5582]

It sounds like you have a complex case. Consultation with a MPN Specialist is all the more imperative. Here are three different lists of MPN expert docs.

Updated MPN forum list mpnforum.com/tsr-the-list/

PV Reporter pvreporter.com/mpn-speciali...

MPN Education Foundation mpninfo.org/medical-informa...

[Bikelove in reply to hunter5582]

Thank you so much Hunter!!! You’re the best!

[rmfisch in reply to hunter5582]

Hey Hunter

I'm hoping you can point me in the right direction. I was diagnosed with Hashimotos about 12 years ago but have never been on treatment. i was diagnosed with PV about 2 1/2 years ago and have only take aspirin and done phlebotymys. I'm headed to Mass General next week for a 2nd opinions consult and I'd love to bring a relevant article about any correlation between hashimotos/hypothyroidism and PV/MPN's as it seems many of the symptoms overlap and I have most of them. I tried searching on this site but came up empty. Figured if nyone could find something it woild be you. Much thx

[hunter5582 in reply to rmfisch]

You are correct that some of the symptoms of Hashimoto's and PV overlap, particularly in the area of inflammation and fatigue. As far as I know, there is no direct link between Hashimoto's Disease and Polycythemia Vera; however, there may be some underlying similar mechanisms to the two disorders.

As you know, Hashimoto's Thyroiditis (HT) is autoimmune disorder where the immune system attacks the thyroid gland, leading to hypothyroidism. PV involves the JAK-STAT pathway, which a key regulator of the immune system. I believe there has been some research into the involvement of the JAK-STAT pathway in Hashimoto's. It is not a topic I have looked into. A quick search will find articles like this. pmc.ncbi.nlm.nih.gov/articl....

If you want to research this more on your own, suggest you search based on the potential common link between HT and the JAK-STAT pathway. Note that this is some pretty technical research. Understanding how kinase systems work is essential to understanding the research.

There is an issue to be aware of in terms of treating the PV. While Besremi or Pegasys are excellent options for many people, a pre-existing autoimmune disorder would be a contraindication for use of the interferons. This is an issue to discuss with a MPN Specialist when considering cytoreduction options. Some on the forum who have an autoimmune condition have done well on Jakafi to treat the PV. Perhaps others can speak to their experience.

Please let us know what you learn and how you get on.

[rmfisch in reply to hunter5582]

thanks so much Hunter. I’ll def check it out.

[EPguy in reply to rmfisch]

I'm one of the "some" Hunter refers. As he suggests re MPNs, the disease is less directly implicated in thyroid conditions than interferon treatments for MPN. Autoimmune (A-I) emergence or increase is a black box risk with IFN, I have suffered a worst case such outcome.

It's the boxed text at the top of this reference:

accessdata.fda.gov/drugsatf...

It's real and not just for legal completeness. But not to overly worry, thyroid is a sort of separate category, it is most often treatable, if that is even required. But having Hasimotos can be associated with other A-I disease risk. And being male is associated with lower odds but more severe outcomes for some A-I's, as I serve as example.

" females are 10 times more likely to get it than males." Same for my Sjogrens and others.

my.clevelandclinic.org/heal...

-If you do at some point consider interferon, I suggest you ask your Dr about at least basic autoimmune tests. These include ANA, RH, CRP, SS-a and others your Dr may suggest. Although in my case these would not have indicated any risk. And watch for any neurological events if on IFN.

[rmfisch in reply to EPguy]

Thanks again EPguy. very helpful

[EPguy]

The SP member was likely me. I post as Sjo guy there. You should find MPN Voice to be a reassuring place to comfort your concerns.

[Bikelove in reply to EPguy]

Thank you! I did find MPN voice through you and I appreciate that very much!