I was diagnosed ET jack2 neg Carl + in Feb 2015. I am 68 ( where did the years go?)
I take hydro 1500mgms per day and asprin 75 mg per day. Always fatigued one hour after taking hydro.
Platelets decreased from 1200 to 450.
Recently I have been experiencing pain in my hand forearms and elbows. Its peculiar more like a pain sensation and really prevalent when waking in the morning. It does wear off. But it is there, and causing me concern.
My question is "Am I alone"
Really appreciate this wonderful app.
So interested in others problems.
Stay safe. Lynne.
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Lynne-G
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Hi Lynne, I don’t have an answer to your query but your comment ‘where did the years go’ just made me smile as I think that all the time! And the feeling is accelerating: the last 3 months in lockdown working from home have flown past.
As for the pain, I have PV and am on Pegasys - I also have odd pains that come and go but they are minor. I find exercise helps: at first it does increase the muscle pain but then it gets better! I have read many others here complaining about muscle and bone pain so I think this is common. Some have mentioned anti inflammatory diet but I have not tried that. If it becomes persistent do mention it to your haemo. All the best, Susana x
Hi Susana. Thank you for replying. Some days it more of a pain than others ( pun intended) spoke to my Haemo consultant she doesn't think its drug related but is going to ring me again in 6 weeks. I would ideally like a few drug free months and see how my body reacts. But at 68 you must expect a few aches and pains. Stay safe 🌈
I also have ET CAL - R mutation. I suffer from joint pain in my hands and feet but not fore arms. Like you I find it worst when I wake up especially my feet. I feel like the bones have fused and it takes quite a while to wear off, some days I feel discomfort all day. I find when it’s warm weather it’s worse which I think is odd. I have read up about it and it has come up as a symptom.
I also have two red patches about 1.5 inches long under my little fingers on each hand. It’s not surface redness it’s deeper within my skin. I’m not sure if it’s related to my ET and I causes me no issues but it looks odd. I only noticed it because my Husband pointed it out as abnormal. It looks like I’ve just been leaning on something, like pressure marks. It gets redder if I’ve been exercising or using my hands physically. I’d be interested to see if it’s only me who has this. I like to be unique 😂🙄
Hi Joanne. This is a strange disease! Everyone of us presents with our own unique oddity 🤗 I spoke with my consultant re my pain and she wasnt too fazed. She is checking my bloods in 6 weeks so we'll see.
Hi Lynne, I too am ET calr and suffer pains. My GP suggested peripheral neuropathy and if you look at the contraindications list of hydroxycarbonide it is on there. Just a suggestion.
Interesting you should mention that. I was thinking maybe it was just age creeping up on me. Time is really flying away. I’m 77 and was diagnosed about 5 months ago with ET Jak2 positive. And we’re trying 500 mg Hydrea every other day and aspirin every day. Once in a while I will get a weird “pain” in my hand and feet, both on left side. Only lasts for a few minutes. Sometimes I wonder if I’m allotting these weird things to having ET or if they would just normally happen anyway. I don’t want to become so paranoid that I think every little new ache and pain is because of hydrea or ET. Sometimes it just is....... I’m learning to accept while not ignoring the changes my body and mentality are going through. As we get older things will change on their own without me making it worse than it is by being so afraid it’s the cancer. I’m learning to listen to my body and become cognitive of the changes and am adapting to those changes. The most frustrating thing for me is trying to explain to family and friends some of the things I’m experiencing because it seems like so many symptoms are just common everyday ones people have. There’s nothing new. So I’m learning not to make a big deal of it but do let them know if I don’t feel well and they can accept it or not. And I no longer have guilty feelings when I have a bad day. We do need to keep asking questions because it does make it easier to know others do understand. Best of luck.
It is what it is and we have to just accept and adapt accordingly. I try and be philosophical and call it my 'pain of day' if it last more than a few days I pay it more attention. My consultant doesn't seem too concerned. Having a review in 6 weeks. Stay safe and thanks for your interesting reply.
The CALR mutation can cause problems in the JAK-STAT pathway that leads to inflammation. This could be related to what you describe. I have a JAK2+ PV and have various inflammation-related conditions, including osteoarthritis and plantar fascitis. However, what you are describing could be peripheral neuropathy. Along with asthenia (fatigue), peripheral neuropathy is a known adverse effects of hydroxyurea (AKA hydroxycarbamide). It is very important for you to discuss this with your provider, as if present, peripheral neuropathy is a serious reaction and a sign of HU-toxicity that should not be ignored.
The good news is that if this is what is going on, HU-toxicity will usually abate when you reduce the dose or discontinue the med. If needed, there are other options for treatment that you may tolerate better. Do go to your discussion with your provider prepared. Most docs are great, but some will ignore your concerns if you are not assertive enough. Here are a few resources.
It can be really hard to sort out what is the MPN, what is the treatment side effects, and what is something else altogether. It is quite complex at times. It can be really helpful to consult with a MPN-Specialist rather than a regular hematologist.
I like you have joint pain but mine is mainly in my elbows and I spoke with my heam team about it, they recommend paracetamol. This has helped but I only try to use on the days which are worse as I think taking daily with my aspirin then having Peginterferon once a week is enough for my body to digest
Hope this helps but possibly speak with your team to see if they suggest anything
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