Hello, I was diagnosed in June 2020 with ET Jak2 mutation, platelets around 600,000 , I am a 53 year old male and on 81 mg of aspirin. When I look a the list of common symptoms for ET a few I have are not on it and I am wondering if it is common with other ET patients ?
1) Pain in both elbows
2) Rib pain, dull ache from bones
3) Itchy sore abdomen left side below ribs
I don't have swelling or redness in hands or feet, but i am tired
Its the dull constant pain that bothers be most, any guidance or assistance would greatly be appreciated.
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Rockhigh
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During the interim of initial GP referral to Haematologist I developed significant elbow pain, mainly on awakening. I must say I do get ‘wear and tear’ type aches in knees, shoulders etc, but I had never had any problems with my elbows. This felt different. My point here is because I was aged 60 at diagnosis I was put on hydrea. The pain in my elbows disappeared as quickly as it had started, as my platelets dropped from 500 to 288. This was almost five years ago now and it’s never returned.
Hi RockhighI ET, jak2 & have the elbow thing too, hadn’t thought about mentioning it to haemotologist as do get other joint pain, might ask now thoughHope you’re doing ok
Hi , I have ET. I do not suffer with your symptoms but I’m fully aware that I’ve read about people who do. Apart from the elbow pain. Now that is interesting because I’m suffering with that but thought it to be stubborn tennis elbow.
I have a lot of joint pain but it is unrelated to my ET, I saw a rheumatologist and it is apparently because of my hyper mobility. It is true that is is received by exercise and stretching for me. It may be these issues are unrelated.
What you describe sound like common MPN symptoms. At the core, MPNs are inflammatory disorders. The JAK2 mutation deregulates the JAK-STAT pathway. This does more than increase hematopoiesis. It also drives the overproduction of inflammatory cytokines which is thought to be responsible for many of the secondary and constitutional symptoms we experience. Controlling inflammation is just as important to our treatment as controlling hematopoiesis.
Fatigue is quite common in MPNs. It is one of the major constitutional complaints. While I do not experience that, I do have joint pain throughout my body (osteoarthritis). I have had great success with Curcumin to treat that issue. It works better for me than any NSAID I ever took.
Regarding the pain you describe as "Itchy sore abdomen left side below ribs" - this is something to follow up on. Splenomegaly is a potential complication with MPNs."Spleen pain is usually felt as a pain behind your left ribs. It may be tender when you touch the area. This can be a sign of a damaged, ruptured or enlarged spleen."
Many docs are not familiar with all of the manifestations of MPNs, even hematologists. If you have not already consulted a MPN Specialist, it would be advisable to do so. Here is a list mpnforum.com/list-hem./ .
I am sorry to hear that you are suffering from pain.
It is a chronic condition. I was put on a medication to reduce my platelets called Hydroxyurea (Hydrea) my joint and rib pain has been reduced. Only down side is that I feel tired most of the time
Hello Rockhigh , such a relif too hear this has I also have ET jak-2 and suffer with the painful elbows and pain in all my bones , I’m new on this site , I’m 52 and feel so much older ,everyday can be a struggle also terrible fatigue , I don’t feel there is much help with ET ,
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