May 10, 2018 at 3:39 pm #7019
digital-warriorParticipantŦallars: Ŧ 1.72Rank: Carer
I wanted to reach out to the community and see if anyone had similar experiences:
First attack: 24, didnt come back til 30
Allopurinol: Age30 – 300mg
First UA: 12 went down to around 4 after 3 months.
Kept at it for a year and another blood test came and it was 4-5
So the doctor put me on 100mg to see if that could be enough, i started getting dull arthritic pain after a while not like a flare but just stiff, aching pain under the foot and just below the toes when i walked so the doc put me back onto to 300mg, and it was fine.
The thing is my gout attack was never on my big toe its be always behind the back of my foot, near the achilles area, it was hard to also bend the ankle.
Over the next 3 years, i had been pretty lazy sometimes taking it sometimes not taking it. Then in the last 5 months it has gone to the point where i was taking it and getting weekly flares so decided to stop and see a rheumatologist in April who said i was probably mis diagnosed years due to the fact my gout was never on my big toe and that I have have psoriasis near in the groin area (I showed this to a second doctor and he said its not enough to be wanted Psorotoic arthrtis), its been 2 months and no flares but I’m back to that same dull arthritic pain under the foot, would rather this pain then a full blown flare but Im not sure if its because of gout or what as it comes and goes, but recently staying longer and longer. Ive been eating pretty clean, low purine diet. He told me to stop taking it aswell and that only we can find out if its “gout” if i have a flare so he can extract fluid out. At this point my UA is 7.7 as i had done a blood test for him.
I did ultrasounds and x-rays and they all look fine no bone damage, slight bursitis
Its now May, I currently have a home test and my UA is 8.4 increased in the last 2 months. It wasn’t a lab test but i might do one in the next month. I worry that if i dont get flares but UA level are still high it is will doing damage internally, making it worse. Like i get people who have high UA might not get gout but ive had a history of these attacks. even tho its not in the typical joints.
So here are my questions:
Since i haven’t had a flare up do you think:
a. Just not go back on allopurinol (im actually taking this time to see if diet and herbal supplements like celery seed and cherry tart will work.
I really dont want to take it for life.
b. Go back on Allopurinol but start of slowly again? since its been 2 months since my last major attack would it be fine?
c. how long should you wait to retake allopurinol again to limit the flares since allopurinol exhasibates flares.
Im just lost and dont know what to do and it starting to affect my everyday life. and starting to worry its becoming super chronic. Any advice would be appreciated.
May 10, 2018 at 8:58 pm #7020
nobodyParticipantŦallars: Ŧ 470.84Rank: Scholar
I do not have a similar experience but I don’t understand why, after taking allopurinol for so long, you have become so hesitant.
Did you have a bad reaction? Is your doctor worried about side effects?
You know your UA is high enough to cause gout symptoms without allopurinol and you know you can get your UA to a safe value with allopurinol. Therefore all you need to do to determine whether your symptoms are caused by gout is to take allopurinol regularly long enough to cure gout (5 months isn’t long enough). This is actually a more reliable way to tell whether you have gout than the joint fluid test. Your doctor’s “only way to tell” is actually the cheapest way to prove that you have UA crystals. Another way to prove it would be a DECT scan. That’s more expensive but it doesn’t produce false negatives like the join fluid test. And if you have access to allopurinol anyway, why do you need a proof?
If your doctor has a different therapy they want you to try, fine. But if the choice is between a drug you’ve already taken for years without issues and doing nothing, I’d go with the drug.
If you can cure your symptoms with allopurinol, then you’ll be able to quit taking it briefly in order to try celery seed and what not. Your UA will rise when you quit the drug but once you are cured the symptoms shouldn’t come back immediately so you should at that point be able to perform such experiments without damaging your joints and your quality of life.
If on the other hand allopurinol doesnt cure these symptoms, you’ll know that trying other ways to lower your UA would be pointless.
May 10, 2018 at 9:25 pm #7021
nobodyParticipantŦallars: Ŧ 470.84Rank: Scholar
As I was going over your post again, I realized I had failed to understand one of your questions so here is the answer: you don’t need to wait to take allopurinol. The recommendation to wait until your symptoms have gone away is probably not baseless but it is kind of old-fashioned.
If you had a proper attack, you could wait it out but since you seem to have something chronic you could end up waiting forever. Better take a regular anti-inflammatory drug or colchicine for a little while along with your allopurinol. Obligatory warning: if you aren’t familiar with these common gout drugs, do not take them without discussing them with your doctor first!
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