NEWBIE

[JOL13]

I have chronic myeloproliferative disease - between ET & prefibrotic myelofibrosis, on HU 500mg per day and 1000mg on Sundays, plus 75mg Aspirin. This is of course on top of all my usual pain medication. I was undiagnosed for 5years until this year in May, my high platelet levels were picked up by chance during a blood test for my high potassium levels. Then my journey commenced. I have terrible fatigue, suicidal migraines, believe me and achy bones. Since June my platelets have gone down from 900 to 616. I have always been energetic and staying positive always helps. I have embraced my diagnosis - the fatigue is a pain, and painful joints which come and go.

[hunter5582]

Hello and welcome. Glad that you found your way here.

It sounds like you experience a variety of MPN symptoms. Unfortunately, deregulation of the JAK-STAT pathway does more than just make too many blood cells. Beyond the risk of thrombosis and hemorrhage, we can experience bone pain, microvascular symptoms like headaches, fatigue and more. The overproduction of inflammatory cytokines plays a role in many of these symptoms. It gets all the more complicated to figure out when the medications used to treat MPNs can cause some of the same symptoms as the disease (headache, fatigue, arthralgia, etc.)

Fortunately, there are things that can help with the symptoms. Your positive attitude is one of them. It really helps to consult with a MPN Specialist. Most doctors, including hematologists, do not have much experience managing MPNs. Expert consultation can make a big difference. Here is a list mpnforum.com/list-hem./

There are some good resources to learn more about managing MPNs. The MPN Voice website is a very good place to start. mpnvoice.org.uk/

There are some recent presentations that are also quite good.

mpninfo.org/conferences/202...

mpnadvocacy.com/video-events/

Wishing you all the best on your journey.

[JOL13 in reply to hunter5582]

😀thank-you so much for the info much appreciated👍

[Aldebaran25]

Hi! I will not add more to the very good pointers provided by hunter, just wanted to say , that your positive attitude is a plus! Don’t lose it . This disease really is a journey. We know that it is chronic but that it can be managed, which may prove tricky as the disease can change in many ways. Being positive and working at maintaining a good quality of life is a great way ahead. All the best!

[JOL13 in reply to Aldebaran25]

thank you 😀

[DiveGoddess]

Happy to see you here Jol13,

I have learned so much from this forum, being able to discuss MPN here has helped me. This group has such a wealth of knowledge. Continued support from me!

[JOL13 in reply to DiveGoddess]

Thank you looking forward to discussing and asking questions - having a bad day today the fatigue gets to me.

[Tipsy2023]

Hi Jol our stories sound so similar I was undiagnosed since 2015. Eventual diagnosis after bone marrow biopsy October 22

I am ok with diagnosis because hi had so many symptoms effecting so many areas that the diagnosis helped . My problem is my haematologist says they are nothing to do with ET though many problems have improved . I was also diagnosed with high potassium2020 then took 2 years

I write down the things that have improved

But the fatigue is so draining it is sometimes hard being positive