Managing Life With an MPN | What You Need to Know

[hunter5582]

Looks like it may be an interesting Webinar from our friends at Patient Empowerment Network.

In this webinar, Dr. Raajit Rampal, an MPN specialist, will share advice for making treatment decisions for patients with essential thrombocythemia (ET), polycythemia vera (PV), and myelofibrosis (MF). Dr. Rampal will also provide tips for managing symptoms and side effects as well as an update on new and emerging MPN therapies.

Register today to watch online on Tuesday, March 21 at 1 PM Eastern (10 AM PT, 12 PM CT) for a 30-minute webinar.

powerfulpatients.org/event/...

[Hidden]

Thank you so much Hunter l hope to make this webinair.Adiewon

[azaelea]

This sounds very interesting Hunter. Meanwhile I’m about to see my GP yet again about kidney issues and wondered if you could direct me to any studies that specifically mention ET causing kidney dysfunction. Spoke to Haematology on routine check yesterday, but Consultant wasn’t able to make the call. Dr. I spoke to wasn’t much help. Blood test results are alright and kidney function. I’d just like proof that kidneys can be affected with ET. The article you already sent was interesting. Thank you, all best wishes. Fran

[hunter5582 in reply to azaelea]

I have not looked at the renal complications associated with MPNs in depth. I have experienced age-related weakening of the kidneys, but it is not associated with the MPN.

There can be a number of factors that impact renal function. The medications we use to treat the MPNs can have adverse effects on kidney function. You are correct to think that there can be issues with kidney function when due to a MPN. The risk of thrombosis impacting kidneys is present. I would also expect the additional load caused by inflammatory cytokines could be an issue. There is likely more to these issues. While some things occur independently, many are in fact related to the MPN. The body is an integrated system.

Here are a few references of interest.

tandfonline.com/doi/full/10...

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

Please do let us know what you learn as you deal with these issues. Your experience and increased knowledge can benefit all on the forum.

[azaelea in reply to hunter5582]

Thank you so much again Hunter for your thoughts and links which I shall read shortly. Visit to GP this afternoon shows all blood counts are normal including kidney function. He’s at a loss to know why I’m experiencing these symptoms. I’m being referred back to Gastrologist who ordered last September’s scan of whole abdomen but this will take a few months because of the state of the NHS! They all say it has nothing to do with ET. I’ll keep our friends on MPN Voice informed meanwhile hoping for this to disappear . I think there’s improvement at least with the nausea and flank pain. Kind regards, Fran

[Anag in reply to hunter5582]

my kidneys had not been well for a while. I was also having problems with a high pulse rate and reoccurring high blood pressure, which would send me into the hospital every month or two. Last summer I started drinking a concoction every day.

one glass of Sencha Tea, half teaspoon of honey, 2 ounces of pure cranberry juice, 2 tablespoons of lemon juice, 1/2 tablespoon of apple cider vinegar, 1 tablespoon of artichoke juice.

I drank half of this before my breakfast and half of it with my breakfast. I drank half of this before my breakfast, and half of it with my breakfast after four months. After four months, my kidney readings were finally in the normal range. I also have to say that I reduced and Anagrelide from four to only two tablets a day and I am taking 150 µg of Besrrmi every second week. Since the medication change, my heart palpitations stopped completely my racing heart is now beating under 70 BMP, blood pressure is 110/70, I have much more energy! Hopefully I will be able to stop Anagrelide completely by the summer! As I suspected, the kidneys were also affecting my heart. This has had a huge positive impact on my quality of life. I still drink that concoction a couple of times a week! 😀 it does me good!

Cheers,

Anag

[DiveGoddess]

Thank you Hunter!

[UKZA]

Would this be avail to view after the event? I am away on the 21st, but would be very interested in the content of this webinar. Thanks. Penny

[Lilliegarden in reply to UKZA]

if you click on the link to register & scroll down, there’s a link to where the webinar will be available after 21st

[Anag]

thanks Hunter!

Am already registered. We are in Portugal at the time and celebrating my husband’s birthday so I won’t be on live but the webinar is being recorded and placed on the website where we register. I will listen in a few days later!

Cheers

Anag

[Meatloaf9]

Thank you for posting, it should be very interesting. I think Dr Rampal is well recognized as a MPN specialist. Best

[111214lucy]

Hi Hunter thank you very much i hope to watch this Webinar, the time will be 5pm with me here in Ireland i have registered. Thank you for all the info you share with us.

[Arnoldthecat]

Hello Hunter. I've have just caught up to watch this webinar, found the treatment for ET Jak2 patients very interesting, especially about Interferon. I am going to ask about my suitability for this at my next appointment. Very interesting webinar.