AngiP

[AngiP]

Hi Everyone, I'm new here. I am 75 years old, and was diagnosed a few months ago. i don't know anyone with this condition and find it very daunting. Would love to know how it is likely to affect me. I am a very active lady

[friendofpiglet]

Welcome.

You haven't said which flavour of MPN that you have been diagnosed with.

I'm sure everyone here will be happy to advise and share experience.

Amdy

[AngiP in reply to friendofpiglet]

Thanks for the welcome I have ET JAK2 positive, so any advice would be welcome

[ChrisAnnSen in reply to AngiP]

That's what I have, am a couple of years younger than you and was diagnosed 12 months ago. So far I've not had any real symptoms which I could lay at the door of ET or Hydroxy. At our age things stop working as well as they used to but that is age-related not necessarily ET related.

[AngiP in reply to ChrisAnnSen]

Hello, the only symptom I have is the tiredness which I didn't have before so think it is ET or Hydroxy related, but your right age does catch up with us.

Regards

Angela

[Superwoman]

Hi, what MPN have you been told you have, mine is ET JAK2 positive told nearly five years ago now take Hydroxycarbamide, Enteric Coated Asprin, and numerous other tablets for blood pressure, and Thyroid.

I know it all sounds very daunting when you are first told, but do not be afraid, most MPN sufferers go on to live a very normal life span, for me it explained away all my ill health problems that I had suffered over the years before being told. Now I have improved my health by taking more exercise eating very well lots more fruit and veg, and a must when taking Hydroxy is to drink at least two ltrs of water a day, this is to flush any toxins through the body, and so far I feel my life has improved greatly, plus my skin with all the water is so smooth and clear, I am 68 this year have two grandchildren that keep me on my toes and love life to the full, do not now dwell on the fact that I have ET life is for living even with it, you say that you are a very active lady this is good keep it up.

So at least you have found us very rare bunch of people at MPN Voice, we are all here for one another so if you are worried about anything just talk to us, never sit and worry about things we are all in the same boat.

If you want more information about your MPN please get in touch with Maz who is our forum coordinator and she will send you some booklets and can also arrange a buddy for you to talk to which is a great help, you will find her details on the MPN Voice page.

There is not much more I can say until we know what MPN you have, but if you every want to have a moan or a rant we are all here for another.

Hopefully we will be speaking again soon.

Jean

[Stevesmum42 in reply to Superwoman]

Hi AnjiP . Jean has just about covered it. Welcome to the forum. Already you have found that this is a very caring community. There is a wealth of experience here , there is always someone to give you advice and encouragement and cheer you along. You need never feel alone here.

Regards Sandy.

[AngiP in reply to Superwoman]

Thanks for your reply it was very reassuring. Like you I have ET JAK2 positive and take Hydroxycarbamide and Aspirin and other tablets for blood pressure and peripheral.

After beating breast cancer I thought 'Oh not again' when I got MPN diagnosis, only to find I would not have to go through similar grueling treatment, but found it very daunting having to take Hydroxy for the rest of my life, I am getting used to the idea now, and now I have found this group I feel much better. I live on my own so have plenty of time to think about things which isn't good in some cases. One thing I am glad of is the Hydroxy seems to have cleared up the dizzy spells I used to have which the doctor could find no answer too.

Can I ask do you have any reactions to certain foods which you didn't have before taking Hydroxy, I seem to have a reaction to mayonnaise and wondered if this was usual.

Hope to speak to you again

Angela

[Superwoman in reply to AngiP]

Hi Angela,

I too have found for some reason That I now cannot eat mayo like I used to even get a funny tummy when I eat cold slaw, used to love tuna mayo sandwich, but now have it without, cream is another trigger for an upset tum, sad as I used to love both. Think now it is trial and error, and now only have in moderation or not at all.

Jean x

[Juliet46]

Hello AngiP I was diagnosed at the beginning of January with JAK2 and ET and it also took me a while to come to terms with it. I have been taking Clopidogrel and 500mg Hydroxycarbamide for three weeks now and my platelets have fallen from 1100 to 700 so I’m feeling quite positive. This website has helped me no end. I consider myself lucky to have found it. So far, touch wood, I haven’t had any side effects.

[AngiP in reply to Juliet46]

Hello, I too have ET JAK2 positive, and am taking 500mgms Hydoxycarbamide. I too am finding this website very useful. The only side effect I seem to have is a reaction to mayonnaise which I thought was quite odd.

[lizzziep]

Hi Angip, others have more or less covered it! You'll get a lot of support from this site, and information. By the way don't believe everything you read by Googling MPN's - there's a lot of mis-information out there! Or should that be referred to as fake news these days!

Best wishes

Lizzie

[MoNut]

I’ve had ET for 25 years now. Started on interferon for nearly 7 years, then aspirin for 6 years and have now been on hydroxylcarbomide for 12 years. I also take blood thinner, thyroxine, blood pressure meds and have inhalers for asthma. My worry is the hydroxy. I have had a very bad cough and wheezing and wonder if it is this medication. Has anyone developed a chronic cough while taking hydroxy. My inhalers do not seem to be working and although I have been under the chest clinic for years nothing seems to be working. Really getting me down now.

[Superwoman in reply to MoNut]

Hi MoNut, I have had quite a bad cough over the years, and was told by my Doctor that it was my ACE inhibitator Zestril, for blood pressure that causes it, had lungs checked and all fine. Bit annoying at times. But when you read the side effects a cough is one of them not nice. Speak with your GP and if on an ACE get them to try something else.

Jean 😀

[Mazcd Partner MPNVoice]

Hi AngiP, welcome to our forum, as you can see we all understand how you are feeling, it is a very scary time when you are first diagnosed, but please read as much as you can on our website mpnvoice.org.uk about your MPN and the medication, I am sure this will help you to understand it all a bit more. As the others have said, I can send you information booklets and details about having a buddy, please email me at [e-mail]

Best wishes, Maz

[AngiP in reply to Mazcd]

Thanks Maz I will email you

[forwardocho]

Hello and welcome to the family!

Which MPN have you been diagnosed with? There is a lot of support on here as we're all in the same boat.

Kind regards

Angela

[AngiP in reply to forwardocho]

Hello, I have ET JAK2 positive, thanks for the welcome, I am finding this forum very informative and supportive.

Regards

Angela