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Does Anyone Have Ringing In Their Ears Intermittently With PV?

Does Anyone Have Ringing In Their Ears Intermittently With PV?

Diagnosed just in May 2020 with PV. All my counts, Hematcrit, WBC's & Platelets are in good range. Recently developed intermittently ringing in my ears. Anyone else have this & is there any treatment for it you've found?

A myMPNteam Member said:

Hello, I haven't had any digestive problems. I take just Hydroxyurea 500mg once a day. I've was just diagnosed in May 2020. I had a friend with PV for a lot of years & her spleen eventually… read more

posted 3 months ago

Brain Fog

Brain Fog

I started noticing issues with brain fog about 2 years before my MPN diagnosis. Went to a neurologist for a full work up. They said it was stress. Now I know differently since I got the MPN diagnosis last year. Multitasking is impossible. I've flooded rooms in my house TWICE forgetting to turn off the faucet. Today I had to hang up my car keys because I got out of my car without putting it in Park. Thank God it was in my driveway and I could jump in and break. So I don't trust myself behind the… read more

A myMPNteam Member said:

UPDATE: As always, remember I'm not a doctor, just telling you what kind of results I have personally had. I've been on the low dose (5 mg/1x day) Ritalin for 2 weeks. I'm sure I'm not going to win… read more

posted 4 days ago

Ocular Migraines

Ocular Migraines

I’m new to the site and just received positive JAK2 mutation results - discovered via a high platelet count at my regular annual physical. I’m in my mid-60s, in excellent health other than high platelet levels (800s), and all other blood levels and markers are normal and I had no symptoms. My hematologist suspects ET, but I will meet with him next week for confirmation & a full consultation and review of treatment options. The only other remarkable issue I’ve had over the past few years are… read more

A myMPNteam Member said:

Lorraine: So true. It feels like “gaslighting” in a way
In any event, at this point I’m convinced that Occular Migraines were definitely related to my ET, and taking HU seems to have eliminated… read more

posted 22 days ago

Can Anyone Share How They Responded To Interferon Or Other Treatments To Lower Their Platelets?

Can Anyone Share How They Responded To Interferon Or Other Treatments To Lower Their Platelets?

I have ET, Cal Axion 9 Mutation (Calr). I have been on HU for over a year, my platelets have reached 1.5 million. (They have been at 1 million for over a year.) I am wondering about side effects. Thanks in advance!

A myMPNteam Member said:

I take Peginterferon as of two months ago. My platelets came down steadily each week and as of this week was 415 which is now in the normal range. I had headaches for about a month but after that I… read more

posted 4 months ago

Have Any Of You ET'ers Ever Stopped Hydrea (under Drs Supervision) Just To See What Would Happen? What Did?

Have Any Of You ET'ers Ever Stopped Hydrea (under Drs Supervision) Just To See What Would Happen? What Did?

I saw a MPN specialist who suggested that I try this. I'd be curious to see if others have done it and what the outcome was.

A myMPNteam Member said:

I guess my only choice then would be the Jakafi. My platelets have just surpassed the high point so I know that the Jakafi does lower platelets so that sounds more right up my alley.
Take care!

posted about 11 hours ago

Anyone Taking Pegylated Interferon For An MPN And If So How Bad And How Long Did The Side Effects Last?

Anyone Taking Pegylated Interferon For An MPN And If So How Bad And How Long Did The Side Effects Last?

I have PV and am JAK2 positive. I was diagnosed two years ago and have been taking 1500mg Hydrea/per day for almost a year. It has been keeping by blood work and symptoms under control. I am under 60 and have concerns about staying on Hydrea long term. I just had a telemedicine appointment with a doctor at Johns Hopkins who also expressed concern about the long term use of this medication, particularly for me since I am also BRAC2 positive. We discussed two other options such as Jakafi or… read more

A myMPNteam Member said:

I've been on Pegasys interferon alpha 2a since Nov 2020, weekly injections. I had flu like symptoms (chills, achy) for 2 days after 1st shot & the next week I had flu symptoms for only 1 day. After… read more

posted 2 months ago

Cholesterol Drugs And Jakafi

Cholesterol Drugs And Jakafi

Jakafi has increased my cholesterol levels off the charts and now my GP thinks I should be on statins. She recommended Crestor as an option and since I have never had this problem before, I gave it a try. I had a severe cytokinesis reaction and am now off of it. Does any one here take statins, and if so which ones? Have you had reactions to them to the point that you ended up in the hospital?

A myMPNteam Member said:

I had high cholest. And tried EVERY statin available. Even tried red yeast rice. They all caused serious muscle and bone pain! Finally tried Repatha, which causes nausea, but lowers LDL. YouTube… read more

posted 4 months ago

Numbers Going Up, Again.

Numbers Going Up, Again.

I've been on hydrea 500mg for about 6 months, platelets were over 900 and after going up and down the seemed to settle around 560, today they are 707, have to go back in 3 weeks to check again. Does anyone else look at all the numbers they tell you not to be concerned about, and are concerned anyway? This is such a rollercoaster.

A myMPNteam Member said:

Have had high platelet counts for over 25 years. Was taking Anagrelide for many years. Tried Hyderabad but I couldn’t tolerate. Once JACK 2 discovered, went on Jakifi and platelets have been under… read more

posted about 2 months ago

I Have Leg Pain From Time To Time Some Days Worse Than Other. I Have ET. Is There Anyone Else Who Has Been Bothered With Severe Leg Pain?

I Have Leg Pain From Time To Time Some Days Worse Than Other. I Have ET. Is There Anyone Else Who Has Been Bothered With Severe Leg Pain?

The pain is an aching and sometimes throbbing pain. I went to ER once and they did MEI to make sure there’s no blood clots but doesn’t know exactly what causes it,

A myMPNteam Member said:

I had pain in my right thigh that would not go away. Also pain in both of my hips. When I was taking chemo, that was the only way that the bone pain would go away. Now that I am not taking chemo for… read more

posted 4 months ago

More Symptoms

More Symptoms

I have recently become suck. I have been to the ER and they did some test. I found out quite a few things I did not know. But anyways is there anyone out there that has problems with your mouth. Lately I have like strip of small white dots in my cheeks. My gums have become sore and I brush and use proxide to try to get it under control. The last few days I have have a sore throat
Yes I just had a Covid 19 and it came back n egative so was wondering if It's another things going on
My CT scan… read more

A myMPNteam Member said:

Sounds like you have thrush.
See your doctor
Also certain drugs , like chemo ones can cause it.
If need be go to the ER
Always use soft toothbrushes, for infection

posted 6 months ago
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