Coming off Allopurinol Introduction
This old topic is about coming off allopurinol gradually. So it applies to gout sufferers during Gout Progression Phase 6: Adjust Uric Acid Cure.
After you've read this, there is a link back to the latest version of GoutPal. Where you can seek more ways to clarify your role in shared decision-making with your health advisers during gout recovery. Or you can continue to make comments below. Revitalizing this old thread for the benefit of current gout sufferers.
You can read all this general chat about coming off allopurinol. Or skip to:
Coming off Allopurinol Forum
🕖Latest Change: January 11, 2023 – ⎙Published:April 11, 2013.
-
Posts
-
Good afternoon, and hello – My name is Sam, and I am a 35-year-old recovering alcoholic.
Began taking allopurinol and indomethicin when diagnosed with gout approx 8 years ago(?). I’ve been sober and alcohol-free for going on 7 years. Earlier, I was drinking about a half gallon of vodka a day.? I’m sure that was the cause of my gout at age 26-27. But I’m not a doctor 🙂
My question is, I want to come off allopurinol if I don’t need it anymore. I have scoured the internet and all signs point to I’ll be on it for life. But I couldn’t find anything that addressed my specific situation.
I used to be 5’8″, 230 pounds, type 2 diabetic, and taking meds for high cholesterol, high blood pressure, diabetes, mental health, gout and heartburn. Now, I’m down to 180 pounds and no longer diabetic. So I have gotten off all medicines but Allopurinol (out of fear) and Omeprozole for stomach/heartburn.
Anyone have any suggestions?? I started chopping my pills in half (300 mg?? Peachy/orange tablet) this week to taper off.
How to handle Allopurinol Withdrawal Note: This discussion is about coming off allopurinol. There is a related discussion about allopurinol withdrawal.
Additionally, I watch what I eat very closely and work out 5 days a week at minimum.? I do smoke still.
The purpose of allopurinol is to lower uric acid to safe levels. For most people, the safe level is 5 mg/dL (0.30 mmol/L) or below.
When you start taking allopurinol, you should get blood tested for urc acid, liver function, and kidney function at least once a month. As uric acid stabilizes at 5 or below, you can relax testing, but never less than once per year.
Once all old uric acid crystals have dissolved (which might take many years) you may find that your test results are consistently below 5. In that case, as long as you have not had a gout attack for six months, and you have no visible sign of tophi, you can reduce the dose by 100mg per day, then test 2 to 4 weeks later.
It might be possible to stop allopurinol completely, but it is dangerous to stop annual blood tests.
Well, I called my doctor to check into this and his nurse called me yesterday to let me know the doctor doesnt advise me to come off allopurinol, as my last reading was 10.7?? I don’t think that can be right, can it?? Oh well.? What the heck was it before I started allopurinol 8 years ago I wonder!? So much for this idea.? thanks for responding, Keith.
It is good that you are improving diet and exercise, but that does not always help gout. Good diet is important for general health, but gout is usually down to other factors. Diet might be one of them, but I always feel that if you cannot get uric acid down with a healthy diet (I recommend Mediterranean diet or alkalizing diet for gout), then you need to rely on allopurinol or similar.
This is exactly why you need to get tests at least once per year, and understand the results. Please get your allopurinol up to a dose that gets your uric acid level to 5 or lower. Anything higher than 5 is putting your joints at serious risk of permanent damage, and eventually crystals spread to all organs, especially heart and kidneys.
Thank you for the feedback, Keith.? Here I was trying to come off Allopurinol when it sounds as though I need a higher dose ;).
Additional notes to OP….
#1 – Get a home uric acid test kit. They are not that pricey and worth it. Keith has links somewhere in this site. I test once every other week or so in addition to the testing done by the doctor during my annual visit.
Once you have gout you have it for life. Regardless of what you do, you are never cured. You just don’t experience physical discomfort for a while – but damage is still occurring. at 10.7 I would be surprised if you aren’t developing tophi and just dont know it. You can diet control diabetes and you can diet control gout to the point where you never experience pain, but they differ in that gout is still grinding away on your joints even when you dont feel it.
#2 – I am with Keith, you should up your dosage until you level off at 5.0 or less. Push your doctor to give you more. Remember that doctors are generalist by nature?and frequently dont care about your uric number as long as you aren’t experiencing pain, but damage could still be happening. You need to take control and let them know your expectations.
Yeah taking a drug every day sucks ass. But Allopurinol is one of the oldest and?safest drugs on the market.
Thanks again, @tavery.
#1 Best way to find the links are to use the search box at the top of the page – just search for home uric acid test kit.
#2 Rheumatologists have recognized the issue about doctors not controlling uric acid properly, and are trying to raise awareness in their guidelines last year. They still have a long way to go, so it is up to us gout sufferers to do something about it. It starts with taking responsibility for knowing your own number, and directing your doctor to help you get it to 5 or less. If they will not accept that, I guess you have to insist on seeing a rheumatologist. I found that flagging the professional recommendations meant doctors took me a little more seriously.
I do not enjoy arguing with doctors, but it’s a lot easier than arguing with gout pain.
sicboy,
I think the first order of business is to get a clinical recheck on that 10.8 SUA. Labs screw up.
If indeed it is repeated while you are on 300 mg/d allopurinol, you will almost certainly want to up your dosage.
I would think that if the 10.8 is accurate you would be having one attack after another so I am skeptical of the number.
How to Taper off Allopurinol
Going back to Sam's original question about "coming off allopurinol". If your test results show that uric acid is safe, then you are right to taper off slowly.
Unfortunately, I can't find any specific advice on this from American rheumatologists. However, I did find some relevant British advice at Allopurinol: medicine used to treat gout - NHS:
Tapering off allopurinol
If you stop allopurinol treatment suddenly, there is a high risk that gout may get worse or you will get serious side effects. Only stop taking allopurinol if a doctor tells you to. A doctor will help you to reduce your dose slowly so you do not get serious side effects.
Do You Need to Wean Off Allopurinol?
So my first advice to people in your situation is to get a blood test and see if your doctor recommends you should wean off allopurinol. And if so, how?
Now, pill-splitting is an option. But going from 300 mg to 150 mg is quite a jump. Because when we're in the "titration phase", doctors usually recommend increments of 50 - 100 mg. See Gout Progression Phase 6: Adjust Uric Acid Cure for more. So if I were in your situation, I'd probably ask for a reduction to 200 mg per day as part of our shared decision-making process.
However, I understand the desire to avoid wasting your stock of 300 mg allopurinol pills. So another option is to increase the gap between doses from 24 hours to 36 hours. But every gout sufferer is different. So again, as part of your shared decision-making responsibilities, you have to discuss this with your doctor. Because your medical history may be important in ways that are outside the scope of an allopurinol forum.
Coming off Your Allopurinol
Which aspects of coming off allopurinol are you interested in? Do you think you need to wean off allopurinol? Please tell me your stories about coming off allopurinol in the comments below.
I'm working on templates that help you identify, understand, and resolve the best way to taper off allopurinol. In the meantime, you can start by adding notes about what you've learned about coming off allopurinol so far.
All you do is highlight any text that interests you. Then click "Annotations" to personalize any GoutPal page. Which means you can keep your coming off allopurinol notes linked here, where you can always find them.
Do you need help with annotations? Or other unanswered questions or unresolved concerns? Then please tell me below. Or, if you prefer to use email, then subscribe to my free newsletter.
Leave Coming off Allopurinol to return to Gout Progression Phase 6: Adjust Uric Acid Cure.