ET

[elliebongo]

Hi, think I've started with a bout of gout today. Affect my foot and toes. (On Hydrea) didn't know it was so painful. I've got Jak2 ET. Has anyone else out there had problems with this x Ellie

[Scottishterrier]

Hi

I remember when i was put on hydrea my consultant that gout could be a side effect of the Hydrea so he prescribed me a drug called allupronil which was to prevent me getting gout so it maybe worth asking your doctor or consultant

stay safe

Scottish Terrier

[Hidden]

Get lemons, say 5 or 6 and cut into small chucks skin and all. Place in a large bowl and cover in boiling water. Let sit over night and then strain off the water into a jug. Discard plup etc. Keep in fridge and drink one 200ml to 250ml glass of the water once a day. Add a bit of honey if too bitter. Gout will go away and stay away as you will alter the acidity of your body and stop the Uric acid crystals forming which are the cause of gout.

[elliebongo in reply to Hidden]

Hi thanks for reply going to make some this morning. Will let you know results. I know that lemons are good for you, so this will be interesting. Have a good day and once again thanks

[Hidden in reply to elliebongo]

No problem. Sour cherry juice(very old variety of cherry) from places like Iran etc does the same. Lemons cheap and easily available and no preservative etc and just as good/effective. Keep taking or gout could come back.

[Chaz1]

Gout is a symptom of MPN, hubby drinks cherry juice to reduce the uric acid & it does wonders, he has it everyday & keeps it under control, if he stops for a few days he has pain again so definitely works. The cherry concentrate is available from holland & barrett (& other stores but we get H&B bottles) add water to a measure of it & it's lovely.

[elliebongo in reply to Chaz1]

Hi, thank you for your reply will order some from H&B and see how it goes.

[Applesnpears]

Chaz1mis right. Cherry juice every day will keep gout at bay. Worked wonders for my mum. Tastes good too.

[elliebongo in reply to Applesnpears]

Hi, two replies have said this so very interesting. So definitely going to try. Many thanks

[Tomsgranny]

Yes! My consultant gave me Alluprinol to help in the early days. I still have sore toes, which I’m told is Erythromelalgia and is one of the things that I have to live with! Have a chat with your specialist, Good luck.

[Uzza]

Hi Scotti,

Yes, from 2010 getting worse each year. Allupurinol is the way to go. I had it before Hydrea.

Feel better...

Cheers,

Uzza

[jodary]

Hi, can I ask how long you have been on hydrea? And how many you take ?

[elliebongo in reply to jodary]

Hi 1 tablet 500mg - been on them for 3 weeks

[jodary in reply to elliebongo]

I was interested because I have been on it for about 16 months although only took 3x 500 a week until this year when I went up to 5x500 so still low dose. I had my first attack of gout about a month ago but strangely have been suffering cystitis type symptoms as well. Unfortunately for me I was given steroids by my gp for the gout which , when I stopped them have caused some unpleasant withdrawal symptoms. So all in all it's been a miserable few weeks .

[elliebongo in reply to jodary]

Hi sorry you are having a rough time at the moment. Seems we take tablets for one thing which causes 2 more problems - which then require more tablets - and so on. Hope things improve soon.

[jodary in reply to elliebongo]

Thank you, I took the steroids without knowing what they could do. Maybe gout would have cleared up without. Hope yours does soon. X

[hunter5582]

Sound like you already know that gout can be one of the adverse effects of HU. Another option is to look into other options for treating the ET. You may find that you will tolerate something like PEGylated interferon or Ruxolitinib better than the HU. While ALL of these meds have their own risk/benefit profile, some of them are significantly less toxic than HU.

If you have not already seen this presentation by Dr. Spivak (one of the leading MPN experts) it is worth watching. Hope this helps and you find relief soon.

youtube.com/watch?v=hbVr9u3...(Not working as expected?)

[Brendaf]

Hi I have CNL only on Asprin I have had gout twice in the last 18 months and yes is so painful. I now take Alpronol 400mg daily this has helped me.

[bluteco]

My dr just called tonight and said I have the jak2 mutation, that’s all I know. And he wants to see me this coming week. I’m so scared from reading on the Internet about Jak2 anything you can help me understand I would so appreciateZ I’ve been a nervous wreck. And also I’m new to here max how do I type something without tying ‘to’ someone? Like start a conversation?