Aspirin and diverticulitis

[Piperpeeps]

Hello,

I hope you are all doing well! My 16 year old daughter was diagnosed with ET, JAK2+ last year and I have been doing a lot of reading. I rejected the HU, recommended by the Dr. and she is on 81mg aspirin, daily.

However, my research has brought to my attention that long term aspirin consumption can lead to diverticulitis. And I am concerned, due to her young age this may cause additional, future issues. I also read that magnesium works similar to aspirin and I was planning to ask the Dr. if we should switch to that instead. After discussing with a friend, she informed me that you could potentially lose your sight by consuming magnesium??. Does anyone have any recommendations or different perspectives regarding this?

Thank you so much for your assistance!

Angela

[hunter5582]

Sorry the hear about the ET diagnosis at such a young age, I think you are absolutely correct about rejecting HU for someone her age. In the absence of high-risk factors or actual symptoms, there is no need to engage in cytoreduction at all. Aspirin-only would be the only recommendation by the vast majority of MPN Specialists.

It is very important for your daughter to be seen by a MPN Specialist. Most hematologist do not have the KSAs to provide optimal MPN care. These disorders are just too rare. This is especially true for pediatric MPNs. This is even more rare. There are only a handful of pediatric hematologists that specialize in MPNs.

Here are two lists of MPN Specialists.

Worldwide mpnforum.com/list-hem./

USA pvreporter.com/mpn-speciali...

There are resources specifically for pediatric MPNs.

Organizations

mpnadvocacy.com/pediatric-mpn/

mpn-hub.com/medical-informa...

mpnresearchfoundation.org/p...

pediatric-mpn.weill.cornell...

Articles

ncbi.nlm.nih.gov/pmc/articl...

pubmed.ncbi.nlm.nih.gov/301...

nature.com/articles/leu201212

mpnadvocacy.com/category/pe...

Presentations

youtube.com/watch?v=-xU1kQh...(Not working as expected?)

vjhemonc.com/video/ysdxqxgf...

youtube.com/watch?v=nwcRA4C...(Not working as expected?)

There is more out there now and more emerging all the time.

There is also an excellent blog on the MPN Voice website for young patients with MPNs.

run by a wonderful young lady who herself has a MPN.

mpnvoice.org.uk/about-us/yo...

Hope this helps get you and your daughter started on this journey.

[Mostew]

Hello Angela,Definitely seeing MPN specialist is a good idea. And if you and your daughter are interested maybe working in tandem with a functional Dr.

I have been told it's difficult to get correct dose of any alternatives to asprin .

Carolyn