I am recently diagnosed with Parkinson’s, it seems to have manifested itself recently following a prolonged battle with gout and the use of febuxostat (about two years) Having recently researched possibilities of using a supplement like Manuka bean, it seems that there is a clash between the two medications.
My question is does anyone have any anecdotal information that may possibly link the prolonged use of febuxostat with the onset of Parkinson’s or any recommendations for a medication or supplement to that won’t affect purine levels in the system.
Best wishes to all in the community.
Bill.
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William321
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My diagnosis of Parkinson’s came after taking some gout medicine for a couple weeks. Didn’t have gout but when I looked up side affects later there was mentioned a possible connection? If you have Parkinson’s for years before diagnosis,then it was probably a coincidence?
Generally speaking there is an inverse association between gout/high uric acid levels and PD. And within the group of people with Parkinson's the higher the uric acid levels are, the milder the case of PD. Here is a study about gout medications and PD - though they do not note any harmful effect of Febuxostat on PD:
Thanks for your response it was most informative, I need to learn a lot more about both conditions, but after reading your reply the simple answer seems to be, I am damned if I do and damned if I don’t. Finding a balance between Uric acid, gout and Parkinson’s is the challenge.
So you are not really 'damned if I do and damned if I don’t' in regarding your urate levels. What I think is most important is to keep your gout under control because exercise is the best medicine for slowing the progression disease and gout certainly limits mobility.
William, I come from the land of manuka but I have never heard of manuka bean?? What is it? Parkinsons takes at least 5 yrs probably 20 yrs to develop. He would already have had PD before he began gout treatment.
Thanks for your post and correction Mucuna is the correct spelling, that’s my dyslexia kicking in 🙈you have intrigued me about your island of Manuka I am going to research it today.
Hi. Thanks for the welcome, I read your post from a year ago about Mucuna and falling asleep, a year on is it having the same affect, have you made any adjustments in your dosing, after reading your post I was considering trying it as insomnia is a problem that has manifested itself recently, I was always a light sleeper and it would be lovely to get an uninterrupted sleep.
I have absolutely no experience with any PD medication at this time and reading some of the historic posts people seem to be over medicating almost as they are in a panic to find a magic bullet.
As far as sleeping goes, I was diagnosed with sleep apnea last year and now use a Cpap machine. It has taken a long to get used to it, but now that I am accustomed I get a solid 7 to 9 hours sleep per night. My husband said that I used to toss and turn all the time keeping him awake and snoring. Now he has to check to make sure I’m not dead because I barely move. I wake up energized, happy and ready for a productive day. I still have a rare case of insomnia. I highly suspect that sleep apnea is not the same animal as what people experience with Parkinson’s.
I still take Mucuna daily. I notice on the days that I don’t take it I am more symptomatic and my disposition is not nearly as positive. Sadly, symptomatic and grumpy seem to go together for me. So, in my case, it is an essential part of my daily routine.
You may have read that I currently see an integrative medical neurologist (Dr. Ilene Ruhoy in Seattle). Dr. Ruhoy has me on a slew of vitamins, minerals , Mucuna and some Sinemet. It is quite a concoction, but I seem to be doing pretty darned good. I still have days where I am symptomatic, but I am far better off than I could be based on where I was in August, 2018 before meeting with Dr. Ruhoy.
I totally understand what you’re saying when you think people are over medicated in a panic to fix Parkinson’s. I think we all just do the best we can with what we’ve been dealt. One person may be further into the disease and need more medication and sometimes I think, as in my case, I just want to optimize my health to feel my personal best. My dosage has not been increased and I have not progressed as of my appointment earlier this month. 😁
As you are likely aware, the day you get your Parkinson’s diagnosis is it sad and scary feeling. I wondered what I did to bring this on, but through this group it has been confirmed to me that the answer is most likely nothing...we are just the “lucky” ones. “Welcome to the club no one asked to join!” This group has been such an amazing support/resource for me and I am so grateful to each person. If you have a question, someone always takes the time to answer and help as best as they can. Who knows best about what to do for different situations than the one who walks in the road? My best “advice” is to glean what sounds workable/applicable for your situation, find an excellent doctor, learn all you can, eat well, exercise, pray and embrace every single good day that comes your way.
That’s a bit verbose, but I write like I talk! Lol Anything I can ever do to help, please give me a shout!
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