Sickness

[Dazakella2010]

Good morning all...

I was diagnosed with E/T jak2+ in April this year.... I am suffering from sickness... mainly in the mornings but can happen at Radom times through out the day. Has anyone else had experience of this?

[Mazcd Partner MPNVoice]

Hi Dazakella, not very nice for you at all, are you taking any medication? Maz

[Dazakella2010 in reply to Mazcd]

Hi

I emailed you yesterday.... not sure if you have received this? X

[mhos61 in reply to Dazakella2010]

Is there a possibility you may be pregnant?

[Dazakella2010 in reply to mhos61]

No definitely not... I just wanted to find out if anyone else was having this symptom...

[Mazcd Partner MPNVoice in reply to Dazakella2010]

yes got it, just about to reply to you. Maz x

[Dazakella2010 in reply to Mazcd]

Thank you so much x

[Purplebailey]

If you have started taking aspirin I would consider that as a possible cause. When I started taking it last July, I was fine for the first 5/6 weeks but then started to suffer from nausea and eventually sickness. Even the first GP I saw said that it was not the aspirin causing it. However after things continuing for a few months, trying omeprazole and then developing further stomach problems, I eventually had to stop the aspirin in November and it was 100% the aspirin causing all of the problems. However, after a short break, I started clopidogrel instead and, touch wood, am getting on much better now. Good luck with getting it sorted though whatever the cause, there is nothing worse than being sick like that x

[Dazakella2010 in reply to Purplebailey]

Thank you for your reply... I was feeling sick before I started taking the aspirin 😩

[Purplebailey in reply to Dazakella2010]

I hope you manage to get to the bottom of it then. In the meantime just look after yourself and rest as much as possible, it's so draining when sickness is an ongoing thing. Take care x

[Marossi]

When I was first diagnosed I too suffered from nausea and dizziness quite a bit, very similar in fact to what I remember of morning sickness while pregnant! At the time I put it down to the numerous venesections I had initially. I started on Pegasys a few months later and slowly slowly got my blood levels under control (it took almost a year). I gradually felt less nauseous. I think my doctor thought part of these symptoms were due to stress and although I was loath to admit it at the time I think there is some truth in that. The months following the diagnosis were incredibly stressful and I struggled to hold down an almost full time teaching position. Now that I have been able to reduce my workload and have come to terms with this illness and how best to manage it , I no longer have the debilitating nausea and dizziness I experienced at the beginning. I hope you start to feel better soon.

[Cja1956]

When I was first diagnosed with ET, I also suffered with nausea and coughing every morning. I thought it had to do with the hydroxy. Then I was okay for a while. Recently, when my doctor increased my dosage of Jakafi, I got sick one time and that was it. It might just be an adjustment to the medication.

Hope you feel better soon.

[Dazakella2010]

Hi

I’m not on any medication yet only aspirin... I have been referred to St Thomas’s so waiting to hear from them.

[JenngeetingR828]

Hi Dazakella - so sorry to hear about your diagnosis. I too have ET, Jak2 positive - diagnosed January 2018. Last year was tough because I had similar symptoms but they were not acknowledged by my first hematologist. I had what I called “nonproductive flu like symptoms” every day.. that would come and go.. hence the non productive comment as I never got the full flu. I would just get feverish and feel horrible and then it would pass.

I also had leg pain/bone pain.. still do but it’s better. Last August they started treating my symptoms- the bone pain, extreme fatigue and flu like symptoms- by prescribing me Hydroxyurea. It’s been nearly 10 months and my energy level is up, nausea is better, fatigue is better and bone pain is down! (Platelets too!)

Talk to your dr. About your symptoms, regardless of your platelet count # because some of us have really debilitating symptoms- with lower numbers than what the medical community notes. (My numbers are now in the 300’s and the highest they had been before the Hydroxyurea was just under 700! Most people feel nothing in those ranges but apparently I did!)

So thankful for this site and the support! Keep plugged in here! Prayers for healing sent your way!

[Dazakella2010]

Hi jen

Thank you for tour reply.. it’s really helped me.

I am awaiting an appointment from St Thomas’s... my haematologist Denied that a headache was even a symptom and told me I had a migraine... I have had this headache for 16 weeks today.... my Macmillan nurse told me that my platelets have lowered slight (which is good) I felt like she was saying I should feel better now. My levels have apparently been up and down since last March now, surely that has got to have an impact at some point. As Maz said.. some people that have really high platelets have no symptoms so the number doesn’t really matter regarding symptoms I don’t think.

Kelly x

[MCW22]

Persistent headache and sickness suggests to me that you ought to be having a brain scan

[Dazakella2010 in reply to MCW22]

I have already had one and it was all clear

[Tiff84]

I honestly wish I could tell you no. I went almost 5 years being diagnosed with ET Jak2+ without any treatment. I was strictly on a “watch and wait”. I tried to take aspirin but, I didn’t have a very good reaction. At the beginning of my diagnoses, I felt sick yes, but mostly just fatigue and night sweats. As the years progressed, I began to get sicker and sicker. I finally began treatment in January of this year. I’m on Pegasys. Due to my age, my Oncologist wanted me on that over Hydrea. The medication makes me very sick for a few days after I take it. I then have about 2 days before my next injection where I feel better than I did before I began treatment. Everyone is different of course, but, like you, this disease made me ill, and really began to effect my quality of life. I hate to say this, but you eventually just kind of get used to it, and appreciate the good days. It sucks sometimes but, you still wake up the next day and still have your life to live ;). I hope this helps somewhat. This can be very hard, and I have days where I struggle, I’m sure we all do. Just remember, you aren’t alone:). Good luck, and I hope you begin feeling better soon.

[hunter5582]

There is some research out regarding the role inflammatory cytokines play in the secondary symptoms people with MPNs experience. Over-activation of the JAK2 signaling system can cause increased levels of cytokines, just like it causes the production of too many platelets. Hard to say if this is relevant to you, but you might want to learn more. FYI - GERD, Insomnia, Appetite loss - all potential cytokine related symptoms. Here is a link to one of the articles on this topic. there is more out there. hindawi.com/journals/mi/201...