Hello all! My name is Anjo, I was diagnosed ET with JAK 2 positive 6 years ago. I am allergic to Aspirin so my Haematologist prescribed me Clopidogrel 75mg. I'm feeling tired and weak all the time. And from time to time a sudden stabbing pain on my right Stomach; Monthly lower extremities bruising and itchy skin... last end of June I started feeling vertigo whenever even when I'm just sitting still.  Haematologist advised me to take oral chemo Hydroxyurea, but I refused to take because I'm scared. Despite of all the symptoms, I continued  doing my  activities of daily living and always keep smiling.  In my case, it's very difficult because there's no one to share about how I feel and what's really going on inside of my body( the pain and all) because everyone thinks I look healthy. I'm very happy to find this thread, who's experiencing the same journey as me. Have a lovely day! 

 Hi Anjo,

It's lovely to meet you.  What with ET, Covid and the whole blood system problem, which in my case is getting more complicated than ever, it's good to have someone to talk to. However although I've had some experiences very like yours they've not all been do with ET.  For example, acute pain to the right of my stomach a few  years ago ended me up in intensive care before having my gall bladder removed.  (I still get twinges there).  And vertigo is now a daily companion but that's because my blood pressure suddenly shot up and began fluctuating wildly.  It's responding to treatment however - still fluctuating, but at lower levels. The bruising and itching oh yes, my goodness, that's par for the course with ET, but are you sure that all of your symptoms are really to do with ET?

Why have you decided not to take hydroxycarbamide/urea?

Looking forward to hearing fom you again,

I have had ET for 10 years and been treated with hydroxycarbamide all that time. I told my travel insurance company and it made no difference to my policy. I have since regularly travelled all over the world!

Hi Jdog

  I m doing ok.

I had 2 letters to shield from hospital first time,but this time nothing. I am being cautious, I feel at my age it's up to me to keep away from everyone else as so many around seem to be breaking rules all around and the young need to carry on with their lives and to work/school

I go out for walks and have many interests but I m lucky my daughter goes food shopping for me.

Apart from that the hydroxycarbamide  is suiting me so far with aspirin as a thinner  and omeprozole to protect stomach.I've been on this regime for3years+ and hospital/blood tests appointments are 4monthly. My platelets are still on the 260 level.

Hopefully the vaccine is not so far away now and we all can enjoy freedom.

Take care everyone

Sabie

Hallo Sabie,

It's good to hear from you and see that you're doing so well.  Your platelets are stupendous - mine have never got below 460 but that seems to be ok.

I regularly get shielded letters and good advice from NHS Scotland - and just go on the same old way, voluntarily self-isolating, driving out into the countryside to walk my dogs and getting the groceries delivered.  The complication is that my daughter lives with me since she moved south from Aberdeen 3 years ago;  this is wonderful, such a blessing, but hard on her; she is sometimes working from home, sometimes going back to work, sometimes on furlough, and always trying not to bring home any risk, which makes it difficult for her  - but at least she gets some normal life.  Of course we're not allowed to visit other people or have people here but she's on zoom a lot for work and people keep in touch.

Nicola (Sturgeon) says we are a pretty law-abiding nation and that certainly is true round here; we trust the people roundabout us, but this is a small country town we live in.

It seems uncertain if, or how soon, people like us will be eligible for the vaccine, being compromised by hydroxycarbamide (and in my case by candesartan too).  However the Oxford people seem to be working specifically

on this.

Best of luck and Merry Christmas if it comes.

Hi jdog

How are you doing.? Here we go again.Have you had a shielding letter this time? I must admit with this newer mutation( which seems to be spreading rapidly  )I am only going out for exercise. It s quite depressing. Have you had the vaccine yet? A few people in their 80s have but not all Gp practises here have received the Oxford vaccine yet.  
Here s hoping 2021 will be a happier and healthier new year for all.

Hi Sabie.Good to hear from you - Happy (better) New Year!

Yes, I've had another shielding letter from the Scottish government and a booklet about the vaccines from the NHS. 

Exercise is really all I go out for anyway, but not even that this week because the ice is so bad.  I'm even getting someone else to walk the dogs, which goes very much against the grain. But having lost a total of 8 months mobility in the last 2 years from injury (6 from broken ankle on black ice 2 years ago and 2 from sprained foot in unfortunate accident at home this summer), I don't want to lose any more of such time as is left to me.  I'm not over 80 so not eligible for vaccine here until February at earliest I think.  I'm not keen to risk the Pfizer one as I had a near fatal shock from a medicine in hospital 2 years ago, so I hope it's the Astrazenica if I'm offered one.  I don't know if the GPs here have got the vaccine yet but I have to go to the surgery for a blood test on Tuesday so  I'll find out then if not before.

Keep safe, well and in touch!

Hello All I have been interested to read some of the thread , It sounds as If NHS Scotland and others are communicating well. Unfortunately my experience iun North Wales  has not been very good, I was very lucky to have a consultant who respected me , listened to me and together we managed my ET without me having to go on Hydroxy Carbamide for 6 years.

This consultant has now left due to stress of working in my loca hospital, this despite learning Welsh and living in the area with her family, a great loss to me personally and to the hospital.

Not long after she left Covid struck and I got it my platelets went from hovering around 600 - 700 to over 800  and I still feel unwell. A doctor I have never met started me on a very low dose that had no effect, they are gradually increasing the dose. I feel very worried about my immune system and the effect of the drug on my resistance to C19. After 4 changes of doctor, nure or consultant I am now having an appointment with the person who specialises in this drug.

No one has talked to me about how to manage or how I'm feeling , no one told me I had a change of doctor, I just happned to notice on my last letter that once again my doctor had been changed.

I feel very let down

Hallo ETishome,

It's really sad that you're feeling so let down, as if illness isn't depressing enough.  You're right about the difference here;  I've been getting regular letters from the Scottish government and the NHS all along, with new bits of good advice and info, and it's surprising what a difference that makes - it genuinely makes me feel supported. The local surgery has been good too; the doctors keep changing of course but they're very practical and helpful about things.  Almost too helpful, I wonder guiltily; aren't the younger and unshielded people getting the short straw here?

Do I understand rightly that you've actually had covid?  And come out of it OK?  That's marvellous.  It would be great for the et community to hear more about that!

I think one has to be on hydroxycarbamide for quite a long time before the immune system is seriously compromised - but for how long?  I wish I knew.  I hope you get the information and support you need from the new specialist and feel better about things soon.