New to Forum

[Mymble]

Hello

I’m new to the Forum and just wanted to say hello to everyone. I’m 51, female and diagnosed with ET JAK 2+ last summer on the basis of my platelets but my BMB results indicated PV. I’m currently on Pegasys and blood thinners. My experience since my first hospital appointment has been a bit of an exercise in ‘good news, bad news’ and that’s ongoing. But on the overwhelmingly positive side, I feel well, no symptoms and have great doctors. Despite this, I still spend a lot of time feeling decidedly wobbly! Grateful to have found this forum. Best wishes to you all.

[Mazcd Partner MPNVoice]

hello Mymble and welcome to our forum, so pleased that you have found us, you will find great support from the lovely people on here. Have you also had a look at our website mpnvoice.org.uk it's got lots of very useful information. Best wishes, Maz

[Mymble in reply to Mazcd]

Thank you, Maz. I have looked at the website- really helpful information- and I have signed up for the Oxford Patients’ Forum.

[Tylerdog1]

You’ve come to the right place. Everyone is very supportive and you can find out pretty much all you could ever want to know, from the MPN website

[Mymble in reply to Tylerdog1]

Thank you. I’m sure I will have lots of questions!

[mhos61]

Welcome to this fantastic forum. It’s informative, insightful and a great source of support.

We all feel ‘wobbly’ at times, but it’s so comforting to discuss any concerns that you may have with people who understand.

Mary

[Mymble in reply to mhos61]

Thank you for the welcome, Mary. It is very reassuring to know that the support is here.

Emma

[Nickthedevil]

Welcome to the forum. I don’t know what I would have done without it when I was first diagnosed with ET 7 years ago. You can always ask for advice and someone will always be happy to help.

Karen

[Mymble in reply to Nickthedevil]

Thank you for the welcome.

Emma

[Ebot]

Hi there and welcome. So glad you are well, symptom free and most critically, feel you are in the hands of good doctors. ‘Wobbling’ sounds entirely normal! There’s probably very few of us on here who don’t wobble at least from time to time! Wishing you all the best. Keep us posted.

[Mymble in reply to Ebot]

Thank you for the welcome. It’s good to know that wobbly is normal!

[Threelions]

“Decidedly wobbly” is quite possibly the best description that I’ve seen of the way I feel a lot of the time as well.

We were diagnosed at a similar time and on same meds.

It’s brilliant to share experiences, thoughts and feelings. Thanks for joining the group and banding together with a great bunch. X

[Mymble in reply to Threelions]

Thank you. How are you finding the Pegasys? It had been great for my blood levels but unfortunately since increasing the dose to 90 my liver has started to complain and my ALT level has been a bit higher every blood test. I’ve got another blood test in a couple of weeks when I guess my doctor will decide what to do. Hope I don’t have to stop taking it.

Emma

[Threelions in reply to Mymble]

Hi , I was originally 90 but reduced to 45. In truth I can’t notice the difference (side effect wise) but it’s keeping my platelet levels down which is what matters.

I don’t think my liver is playing up. Do you have pain on the liver region or did that issue show up on a blood test?

[Mymble in reply to Threelions]

Hi - my blood tests include liver enzymes and one of these, ALT, has been increasing. Normal is no higher than 49 and mine is 114. My Dr said it’s quite common for Pegasys to irritate the liver so they are monitoring it and I guess if it keeps going up we may have to rethink my medication. Unfortunately, by the time my ET was diagnosed, I had a chronic portal vein thrombosis and have portal hypertension. Because of that, I also see a liver specialist who is more concerned about my ALT than my haem dr and she’s asked me to get my bloods done sooner than scheduled. I had a liver biopsy last November and all was normal so I’m not too concerned about damage to my liver just yet but I don’t suppose my ALT can be allowed to keep rising without doing something to deal with the cause. And the most likely cause is Pegasys😕

[Alexbits in reply to Mymble]

Hi,

Check this thread regarding liver issues healthunlocked.com/mpnvoice...

[piggie50]

Hi Mymble,

Do you drink alcohol? Or any other drugs that may affect the liver. I have PV and have been on Hydroxy for 7 years. In September I had to start taking Methotrexate for RA. I was having weekly, fortnightly and now monthly blood tests. Initially all was fine but twice within the last 5 months I have had a few drinks. In December I had 1 glass of wine and 1 baileys on each of three nights, not a lot, but this caused my ALT to rise to 80. Two weeks later it was back to normal. I have not drunk any alcohol since mid December and it is fine. I think the 2 toxic drugs and the alcohol is just too much for my liver. My heam advised that it would need to be 10 times this level to indicate liver disease.

[Mymble in reply to piggie50]

Hi Piggie50, I don’t really drink at all. I think I had maybe 6 glasses of wine over the two week Christmas period and hadn’t drunk any alcohol since the Christmas before that. I also had a glass of champagne in mid-January and nothing since. So maybe even these small amounts have an affect. I also take Pradaxa and Carvedilol. It’s reassuring to know that ALT can go much higher than mine is currently without having too worry to much, so thank you for sharing that with me.