GOUT!!

[retromicky]

Hi, does anybody with ET suffer with gout? I seem to be getting more and more attacks of gout as time goes on!

Michael

[Hidden]

Hi Michael, I had PV for 16 years and had horrible gout attacks before it was finally diagnosed, so I now take allopurinol and, thankfully, the bad attacks are a thing of the past. It does seem to be one of the extra gifts that these MPNs give us, but is controllable with drugs. I tried just taking cherry active capsules but they didn't quite keep it under control so had to take the allopurinol. I've now moved onto MF so I take Ruxolitinib also, which has helped with my generally puffy ankles too so I'm happy - and if I never have to suffer another gout attack I'll be even happier!! Good luck with it, your gp should check your uric acid levels as, apparently, it can lodge in the kidneys and do irreparable damage, so well worth being on the right meds.

Christine

[Splb3317 in reply to Hidden]

Hi Christine,

Yes, I've had gout, virtually from the start of my PV 2 years ago. I get cellulitis as well, and, at first, the GP confused the two, until, one day, I went to her with 'cellulitis' and was told that, in fact, it was gout. As you will have found out, the pain is excruciating. My haemotologist put me onto Allopurinol and the gout has disappeared. The Allopurinol works by controlling the uric acid levels in the blood.

I hope you get it treated soon. I've never known anything so painful.

Kind regards,

Sandra

[Splb3317 in reply to Splb3317]

Hi Michael,

For some unknown reason, I've just called you Christine. I do apologise.

Sandra

[retromicky in reply to Splb3317]

That's fine Sandra, I sometimes get called that but only on the weekends haha

[sjdard]

Morning, I been suffer for years with Achilles / heel pain and always told that it was achillies tendonists, but now I'm wondering if it is gout. Where do you get your gout and what are your symptoms?

[Splb3317 in reply to sjdard]

Hi, I get gout round my ankles. Each attack affects just one ankle. The skin round the ankle goes red, hot, and puffy and very sore. The pain gets worse and, at the height of an attack, I find it difficult to put my foot to the floor. It's incredibly painful. Thank goodness for Allopurinol. I never have an attack when I'm on it. Your GP should know from the levels of uric acid in your blood, whether what you have is gout or not.

Kind regards. I hope you get it sorted soon.

Sandra

[sjdard in reply to Splb3317]

Thank you for reply, does your ankle hurt all the time and even more when you have a flare up? My gp is not concerned about it, but I fed up with this constant pain, there are times I can't even walk, walking up stairs is a real problem one step at a time. Sitting I get sharp pains and constantly having to swap ankle position

[Splb3317 in reply to sjdard]

Hi sjdard

I only get that pain around the joint during an attack I think gout does only affect the joints. People get it in their knuckles, toes and larger joints like ankles and rarely, even knees I think.

Like you, I get some pain at the back of my leg, low down, but that is not the same pain as gout. My haemotologist said he thought that pain could be tendonitis, but I know that some people with MPNs sometimes have bone pain.

All I know is that now I have had gout, there is no mistaking it!

I hope you get an answer to your pain soon. Any severe pain like that takes over your life.

All the best

Sandra

[sjdard in reply to Splb3317]

Thank you it sure does, hope you get relief soon.

[Splb3317 in reply to sjdard]

Hi again,

Fortunately, I've not had any gout since I started taking Allopurinol several months ago. It keeps the levels of uric acid low. If your problem is not gout, Allopurinol would make no difference to it.

Good luck with resolving the problem.

Sandra

[retromicky in reply to Splb3317]

Hi Sandra, thanks for that, yes the blood test came back with high levels of uric acid, so as of today I am on the Allopurinol

[retromicky in reply to sjdard]

Hi I get the gout in my big toe and to the side of it...(red, swollen and painful) It's strange you say that you get achillies problems...I do too and have had painful achillies for a couple of years now. Could it be it is related to high levels of uric acid?

[Splb3317 in reply to retromicky]

I wonder! That's interesting,isn't it? Nearly as interesting as your weekends, from what you say!!

Sandra

[Folly41]

My wife was diagonised with ET after a blood test for Gout. She did not find that Anagrlide made any difference to the Gout.

The best treatment to relief the pain was to put her foot in hot water with Epsom Salts.

In addition she was advised by the person at the local health shop that gin and tonic is recommended.

This is because of the quinine in the tonic water and the juniper in the gin. She has also found this to be helpful. Also black cherries are good.

Finally, I have been advised that raw celery is good for Gout.