Hi guys not been on in a while !: Hi everyone I've... - MPN Voice

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Hi guys not been on in a while !

Boobles profile image
3 Replies

Hi everyone I've not been on in a while I've been a little head mashed and since having a bad allergic reaction to the fabulous jab I'm still in solitary confinement grrrrr.i wanted to ask if anybody has any ideas of how I can get a bit of peace as last week I had to go into hospital as I had a major acute attack of gout and still in quite alot of pain I've had a course of colchicine tabs but hasn't gotten rid of it I can't understand how I've got it I've been on hydroxy for 8yrs and nothing until last week I would be so grateful if any of you have any ideas hope everybody is doing OK and taking care of yourselfs jade x

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Boobles
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hunter5582 profile image
hunter5582

Sorry to hear you have had a rough go of it. You are correct that the HU could be the cause of the gout. Unfortunately there are long-term risks associated with HU (and other meds) that can take a while to show up. Fortunately, you do have other treatment options. Depending on your situation PEGylated Interferon is also a first-line treatment option for ET/PV. Second-line options include Jakavi (ruxolitinib) and anagrelide.

My experience with HU was also that I could not tolerate the toxicity of this med. I have now switched to Pegasys. At 45mcg it is controlling the erythrocytosis and thrombocytosis. I have experienced no side effects after 6 months. This is my experience. Others are not able to tolerate PEG. you will have to sort out what is the best choice for yourself.

At this point, consultation with a MPN Specialist is certainly in order. Hopefully you already have one on your care team rather than a regular hematologist. Ig not , it is definitely time for expert consultation. Here is a list of MPN expert docs.

mpnforum.com/list-hem./

All the best to you.

Judypinner profile image
Judypinner

Hi. There is a very old remedy that has helped some of my family. Take large cabbage leaves. Place them in the freezer. Allow to get very cold. Then Wrap them around affected areas . It seems to help . My uncle had good relief from his leg gout. Judy xx

MichaelS profile image
MichaelS

Hello Boobles, since being diagnosed with PV, way back in 1973, I have been on Allopurinol 100mg daily because my haematologist said the drug for PV causes a rise in uric acid which causes gout. One blood chat with a locum blood doctor told me to not take the allopurinol to reduce the tablets I was taking, but after a while I had an attack of gout. My GP was annoyed that the locum suggested the abstinence :-)

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