Hi guys just wondering if anyone else has suffered from gout about 6 weeks ago had a really painful big toe joint this has been treated with various NSAID and I’ve etc but still painful at the mo. I wonder if it’s a common thing with us pvers I’m mainly veggie, hardly drink alcohol, I cycle I’m fit and healthy so really don’t understand gouts attraction to me. Any tips would be appreciated.
jason.
I have experienced osteoarthritis and tendonitis along with PV. While I have not experienced gout, others with PV have reported it. It can come from the PV or from some of the drugs (e.g., hydroxyurea) used to treat PV.
"Gout is a build-up of uric acid, which our body produces naturally. In polycythemia vera (PV), red blood cells are replaced more frequently than normal. Because of this, patients with PV are more susceptible to gout. While typically felt in the fingers, hands, and toes, it can affect any joint and cause extreme pain." "Sometimes controlling the underlying PV or other MPN can reduce the frequency of chronic gout attacks. In other cases, it is the MPN treatments themselves, in particular some chemotherapy drugs, that could be contributing to the occurrence of gout." patientpower.info/myeloprol...
Suggest reviewing the issue with a MPN Specialist as well as a nephrologist for a case-specific answer to your question.
thank you , I am currently under the doctor for this but will speak to my consultant about this at end of the month.
saw a podiatry specialist recently and he suggested it was halux limitus.....the joys of getting older! 😅Decent footwear, the right sort of exercise and the correct exercises should help.
Obviously get yours checked out but it might be something as "simple" as this
hi I have 50/50 PV and ET started with gout as one of my first symptoms was very painful I’m om Allopurinol daily now
Hope you get some relief ask your haematologist
My wife has MF, she has allopurinol once a day due to having high uric acid levels, the allopurinol is to prevent the uric acid in her blood causing gout. From memory, which is pretty poor we think it's high due to the mpn and not due to the medication for the mpn. Previous to being diagnosed she was very active and ran, and cycled, but had painful red toes, which was gout. Though an aspirin would fix the pain for four days at a time. She doesn't get gout now.
Hi. I have nothing constructive to add here except to say that I experience the intense pain in my big toe and have often wondered whether this is gout.
Like all of my ET symptoms I am unclear whether it is related to MPN, its treatment or just age.
Fortunately the pain is not overly prolonged and I mentally file it away with the peripheral neuropathy, erythromelalgia, actinic keratosis, anaemia, pruritis, breathlessness and tiredness as another side effect/symptom - that like all of the others, comes and mostly goes. I tell myself it could be worse and perhaps my daily use of Diclofenac helps minimise things.... and at least I didn't wake up dead today !!
My husband had PV which progressed to Myelofibrosis. He developed gout in his big toes which was extremely painful. .. couldn’t even bear the bed sheet to touch his toes. Eventually he was permanently taking Allopurinol which was excellent. From what I remember he had to wait until the acute attack was over before starting Allopurinol. I think anti-inflammatory tablets were more or less contraindicated/ used with great caution due to low platelets. The Allopurinol had to be titrated and later increased when gout got worse but it was very effective.
I have just had first attack of gout just below big toe. It swelled as the day wore on and became so painful. Side if foot quite red and even a slight touch on it hurt. Saw GP Wed and was precribed Colchicine - instructions on box 1 tablet 2-4 times a day. I had 12 tablets. Rather confusing as to how many to take so took one Wed afternoon and one late evening. Next day took one in morning - stomach making alot of noise afterwards! Mid afternoon I felt awful and was sick and had diarrhea. Wondered if I should take another - I did. Went right off food and just drank water - I made myself eat a little cottage pie but too much of a struggle. My bedtime I had been on the loo about 3 times and again during the night.My toe swelling has gone down and us just slightly sore at side of foot.
My question is (GP closed as Good Fri) what dose is the norm?
I haven't taken any today. Don't feel 100% yet.
Gout is new to me.
Would be interesting to hear what otjer members take and for how long
Thanks
I did right before my diagnosis. Now not so much. I’m not sure if Besremi has helped with this or not. I will get a flare up if I eat junky candy. Like Sour Patch Kids. So I stopped eating that. My favorite. 😩
those really are the best lol
Hi! I was diagnosed with PV almost three years ago. I do not have symptoms of gout as of now, but while doing some research I found this that might help you.
“Purines: You can develop gout as a complication of polycythemia vera. This is a painful type of joint swelling. In general, it’s recommended that you avoid foods that are high in purines (such as red meat, organ meat, cold-water fish) if you have gout because they can increase your level of uric acid—a major culprit in gout.
Foods high in purines:
1. Seafood
2. Organ Meats
3. High purine content:Bacon, turkey, veal, venison
4. Medium purine content: Beef, chicken, duck, ham, pork
5. Purine-rich vegetables: Asparagus, dried beans (especially fava and garbanzo), mushrooms, peas, spinach”
I hope this can help you!
Not sure if this will help but I have PV and only do phlebotomies for treatment. My uric acid has been high although I've never had a full-blown gout attack. I do get some symptoms (red big toe, burning/pain, joint pain), and have crippling osteoarthritis (back, hips, other joints). When I asked my MPN dr.'s office about this the response was:
"Uric acid is a byproduct of cellular debris, when you have rapid cellular turnover, as is common in MPN disorders, there is excess build up of uric acid. It is very common in MPN disorders. Allopurinol helps to clear out the excess uric acid, which helps to prevent build up and gout symptoms."
I've recently been put on 200 mg Allopurinol/day and I have seen my Uric Acid number drop. From the short time (about 1 month) I have been on it my number dropped from 6.8 mg/dl to 4.6 mg/dl. Normal range: [2.5 mg/dL - 6.5 mg/dL].
Just an update on my Allopurinol intake and new symptoms. I have no way of knowing if any of this is related, but the Allopurinol is the only thing different in the past 6 weeks or so. My blood pressure had gone up (both numbers more than a little bit), my morning blood sugar, which had been hovering between 95 - 115, is not 185 - 205. I don't take any diabetes medicine but now fear this medication of another one is causing these numbers to go up. I don't eat sugar as I am on a plant-based diet so have no idea. Dr.s have been no help. Each tells me to talk to one of my other dr.s. Frustrating.
Jasbak22 how did your call with the doc go on Thursday?
Hi my doc call confirmed gout or at least high levels of Uric acid. I guess like you I’m reluctant to take an additional medication but am going to seek an opinion from my consultant at the end of the month. My BP is always high despite good diet and exercise so I need to be careful of anything that might make it higher. Hope you get to the bottom of this issue. All the best. Jason
Sorry to hear your doc confirmed high levels of uric acid. I just recently stumbled across something called luteolin, which a Dr. David Perlmutter mentioned in something I was reading or watching. It's supposed to lower uric acid as good as Allopurinol does. I have no idea if this is true or not, and perhaps someone here is more familiar. Apparently luteolin is found in many vegetables such as celery, chili peppers, and other veggies. If you google it, you'll see there are articles touting it may help with cancer as well. Just one from Science Direct:
sciencedirect.com/topics/ph...
Again, I really know nothing about this so need to do further research. Would be nice if there was a more natural alternative to Allopurinol.
Hi Jasbak22 The information from LIGEBA is accurate according to my experience ie high uric acid levels because of high cell turnover being processed by your spleen. I have PV and had a gout attack for the first time in January (I couldn't walk for several days), after the cardiologist stopped my colchicine 7 weeks before that. The haematologist thinks the colchicine was keeping the gout under control. I am now on 300mg allopurinol/day after starting on 50 mg in January and gradually titrating up over several months. Apparently if you don't do that it can cause another gout flare. I am also taking colchicine again as it will reduce the likelihood of a flare too. The uric acid levels came down quite quickly into the normal range as mentioned above. I've been told I will be on allopurinol at least 2 years and possibly for life. When my uric acid levels are at the bottom of the normal range the allopurinol dose will be titrated down. My brother also has PV and his haematologist has been prescribing him allopurinol for years as a preventative for gout. Until you get on allopurinol you will continue to have symptoms. I found this article very helpful: racgp.org.au/afp/2016/may/t...
All the best for a quick resolution of your symptoms as it can be very painful. Best wishes.
Gout and MPN
PV diagnosed in Jan 2023
Joint pain: Pv or arthritis?
Can ET & PV Hereditary
