Hello everyone, I hope you are all staying safe. I have a weird question. I’ve had a very painful and swollen ankle which my Doctor diagnosed as possible gout. The swelling went down after about 5 days and the bruising was evident on the outer side of my foot for a further 5 days. Bloods ruled out gout and my doctor is going to email my Hemo at Guys. Has anyone experienced anything like this please? I have ET and on aspirin only.
Thank you for taking the time to read this😊
I have PV and I am on Hydroxy Clopidegrel and yes I had a similar ankle problem , very strange as no accident had happened, my doc sent me to the physiotherapist at our surgery she did a bit of manipulation and after a bill of £65 she said come back in a week !!! But within that week the pain and swelling went away. Didn't go back.
Thank you for replying. Hope you continue to stay well. x
Hello 👋... yes I have had a swollen foot (went on for months ) ......and now hands and fingers .... I have been told it’s nothing to do with ET ...but it is .....an overproduction of cytokines .... these cause swelling .. inflammation....and are because of ET .... this can be easily researched but sadly none of the professionals have a clue about other conditions that are another element of ET .... I have been diagnosed with gout ... then rediagnosed with arthritis and the latest diagnosis ( seen 3 different doctors) rheumatoid arthritis.... I now treat myself , I take my blood thinners but for the swelling and inflammation i use ice packs and heat packs .... hope this helps you ..... stay safe ... Lainie xx
Hey Mich10... 
Are you absolutely sure that you did have a sleep walking episode where you might have gently rolled your ankle?
Easy to do... just a thought... (?)
Stay safe & well...
Steve
Hi yes 100% sure. I can see why you think that. This is the second time I’ve had it. My family thought it was a bite each time because the swelling was so severe on my ankle. I wanted to attach a pic of that too but it would only allow one photo.
Than you for replying Steve 👍
Ok cool... so you're not a sleep stumbler then... :-))
just a thought... was all... 
Best wishes
Steve
Hello. I have PV and suffered with swollen ankles for a long time. I was on blood pressure tablets and since coming off them my ankles have been good. Take care
I don't get problems with my ankles, but I do get swelling and horrendous pain in my thumb and finger joints. It's so painful and swollen I can't bend my fingers. It only really occurs in the evening and by morning it's gone. Mentioned it to GP who said could be rheumatism and when it happened to go back for a blood test, which would be great but they shut in the evening.
Thank you for replying. I hope you get sorted soon x
Thank you. I've had it years and just put up with it as no alternative other than going to A & E and consider they have more important things to deal with. Interesting that someone mentioned cytokines- I'll do a bit more research into this. Stay safe.
Weird and painful meanwhile I thoroughly recommend ice xx
Like many of us I too have swollen joints, so much so I cannot bend my fingers , last week I read that people should use hot pads to warm the joints as it is the easy way to open the veins and allows the blood to flow around the joints whereas cold compresses close down the veins and blood doesn't flow so easily. Sounds logical enough, I must try it soon as I do a lot of sewing and it's agony.
Thank you 😊
I have had the bruising around my ankle but not particularly painful. I have never had it investigated and never thought too much about it. My ankles swell and sometimes bruising coincides with that but only feel the discomfort of the oedema
I've had bruising and swelling on my shins and calves for weeks. My GP diagnosed it via photo as erythema nodosum an infection under the skin. Antibiotics haven't worked and it's painful. Cause unknown. I'd never heard of it before. How do I post a photo,?
As Melanie66 mentioned, you might want to consider the impact that inflammatory cytokines may be playing in what you experiencing. MPNs are increasingly being looked at as inflammatory disorders with hematopoiesis being only one of the symptoms. I have been looking at this a good bit as I have a JAK2+ PV. I experience a variety of inflammatory disorders that I believe are the result of the JAK2 mutation and its impact on the JAK-STAT pathway. For me this includes: osteoarthritis, plantar fasciitis, GERD, insomnia and eczema.
The JAK-STAT pathway does more than increase hematopoiesis. It also impacts the immune response, hormone production, tumorigenesis, apoptosis and the production of inflammatory cytokines. This overproduction of inflammatory cytokines is thought to be linked to many of the secondary symptoms people with MPNs experience.
There is a fair bit of good research out there on this topic. Here are just a few representative samples if you are interested.
hindawi.com/journals/mi/201...
sciencedirect.com/science/a...
sciencedirect.com/science/a...
ncbi.nlm.nih.gov/pmc/articl...
If you are new to reviewing professional literature, do know that a medical dictionary is a must. There is a good bit of secondary reading needed if you are not already a medically trained professional. It is worth the time to do it I think since it allows you to gain knowledge about the condition(s) you need to manage. Knowledge is power and lets you make better decisions about your care.
We do not, of course, know to what degree the role of inflammatory cytokines has to do with your current situation. This is one of the times where consultation with a true MPN Specialist is necessary. Unfortunately, not all docs - even hematologists - have the KSAs we need to get answers for these rare disorders. That makes educating ourselves all the more important.
All the best to you. Hope you get answers soon.
Thanks, great info!
Thank you. A great reply. A medical dictionary is a must. I've just look up a couple of words which i.cant spell. Should have studied Greek
I wonder if my sciatica is also connected to this. I've had numerous investigations but no cause can be found. The sciatic nerve is inflammed and I am seriously disabled
It would kind of be a maybe to that. The KISS way I look at this is that the overproduction of inflammatory cytokines predisposes us to a whole variety of inflammatory conditions. The key is to learn to control inflammation. I have found some things that help, but it is a lot of trial and error.
Thank you so much! 😊
I've had similar in my left ankle and foot. I have always had issues with very loose ankles from numerous sprains in my younger days. Sometimes I wear a foot support to prevent pronation while I sleep. Keep in touch with your hemo doctor to rule out vein issues and clots.
I have had an episode of severe swelling in my left foot the first year of being diagnosed with PV Jak 2. The doctor I had at the time saw that it was red and felt the heat then asked if I had ever been diagnosed with Lepus which I haven't. I still have slight swelling every once in while but nothing like that time. Every time it does this the only thing I can do to stop it is to elevate my foot.
I know that can be very painful and it happens to me. Because I have a history of high uric acid my doctor tells me it is gout, no blood work is done. The Dr. reasons that the uric acid has collected in the joint and is not it the blood stream so my uric acid level would appear more normal, in his mind the test is useless at that point. All I know is that it is painful, comes on suddenly and if I take immediate action, get off it and ice it. I can recover quicker. In some cases I have had to go on a 3 day course of steroids to get it under control. I suspect gout in my case because too much beef from the fast food places will bring it on along with poor hydration. My advice is to stay hydrated and avoid purines from animal sources. Did you by any chance enjoy some seafood and an adult beverage or to prior to this?
I am JAK 2+ with PV and on aspirin and Hydrea.
Good luck and a speedy recovery!
John
Just saw this interesting link. pvreporter.com/gout-in-mpn-... Sounds like something worth learning more about for those affected this way.
Thank you! 😊
Interesting, but I don't think you need take meds for gout unless you get it a lot.
For the first year after my MPN diagnosis I was on low-dose aspirin (and supporting medication to reduce risk of gastro-intestinal damage - but that is another (long) story ... ). Early this year chemotherapy with Hydroxycarbamide (HC)/Hydroxyurea was added. At that stage the platelet counts were high, approaching 1000; my haematologist said that destruction of the platelets by the HC could lead to urea being generated as a by-product in sufficient quantities to cause a flare-up of gout, so I was prescribed Allopurinol to counter this risk. Recently, with the platelet count having fallen closer to normal levels (around 500), I was told to continue taking the Allopurinol until my supply ran out but advised that no more would be required thereafter ...
Hope that balance of meds works for you. Do wonder if PEG Interferon or ruxolitinib would be options if the HU causes problems with the gout. Hopefully it won't be an issue. Wishing you success with balancing the meds.
Thank you. Your post is interesting because the doctor sent me for bloods to see if I had signs inflammation in my blood. It was negative so gout ruled out. How can you test uric levels?
I drink a lot of water, daily, don’t like seafood and don’t eat meat, however I didn’t have some rose 🍷 prior to the swelling. It was so painful that I really thought it was gout. The mystery continues....
Stay well John 👍
I read that aspirin sometimes can cause some unexpected side effects.
Found this on the alcohol and drug foundation website
'The most common side effects of aspirin are:
dizziness, ringing in the ears, blurred vision
drowsiness, fatigue, depression
thirst, sweating, fluid retention, swollen ankles
abdominal discomfort or bloating
nausea, heartburn, diarrhoea, constipation.'
Hope you get it resolved and feel better soon
How did you post this photo,? I can't see a way to do it
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