March 9, 2016 at 9:23 pm #3593
I have a bottle of allopurinol pills ready to go but my Dr. and pharmacist says not to take them until I was symptom-free. I have a slight aches that move from foot to foot affecting my ankle and achilles on my left foot and an occasional ache on my right toe. Every day it’s somewhere different. It seems to change locations all the time. It’s not what I would call a flare up but just a lingering ache. I take Indomethacin when needed but I want to get to the root of the problem and try allopurinol. Should I start or should I wait until all pain is gone. What will happen if I don’t?
March 9, 2016 at 9:23 pm #1019PatrickParticipant
Finally prescribed Allopurinal – What is Allopurinal?
I’ve been diagnosed with gout for about 4 years now and my doctor FINALLY put me on Allopurinal. A little backstory as I’ve told it before, but my Rheumotologist was reluctant to put me on Allopurinal because his thinking was I wasn’t getting more than 3 “severe” Gout attacks a year. We went back and forth every time I went to him to be treated, saying I was tired of this.
Well I had 2 severe attacks that were within 2 months of each other (Dec and Feb) and after the last one in Feb, I went back to my regular MD and asked for all the previous annual physical blood work results he had and I brought those with me 2 weeks ago to my Rheumotologist.
Since 2012 my Uric Acid results were as follows:
See the trend? Well since the end of last year, I’ve made sweeping changes to my lifestyle and changed diet, alcohol, hydration, and really bumped up the exercise. The results were 8 lbs of weight loss (I weigh 165 lbs by the way) and my Uric Acid was 7.6. Not good enough for me or my Rheumotologist. He put me on 100mg of Allopurinol and 0.6 of Colchcine. He wants me to update my blood work in 5 weeks and wants a face to face in 6 weeks. I feel like “finally I can start to get this Uric Acid under control” after 4 years of begging.
I read a lot on this site, as well as a few others so I kind of know what to expect in the upcoming weeks. Anything you all can think of would be appreciated.
I learn a lot from the experiences of everybody here, and thank you for that.
March 15, 2016 at 9:02 pm #1025
Patrick, Glad to see you were finally given meds after your suffering was needlessly extended. Anyone who thinks up to 3 gout attacks per year is acceptable has never had a severe gout attack. There are a lot of theories about starting allopurinol. Some say you should start out with 100mg/day and slowly increase, with the theory being that gradual increases may prevent gout attacks that sometimes occur when starting allopurinol. Some say you should start out considerably stronger to start having the crystals dissolve sooner. Read up on the prescribing info. From the document I have, the min effective dose is listed as 100-200mg/day; average dose for mild gout is 200-300mg/day and average dose for moderate to severe tophaceous gout is 400-600 mg/day. Max recommended is 800mg/day, and it is suggested that requirements for over 300mg be divided into multiple doses. Sounds like your doc is starting you out slow, and will want to monitor not just your uric acid level after this, but also check for any liver or kidney problems to make sure your body is handling the allopurinol ok. I assume he will then increase the dosage if all is ok. The dose that is actually correct for you is the one that gets and keeps your uric acid level at a point where your gout is reversed, and then the maintenance dose should be one that keeps the UA level to where the gout cannot form crystals again. While all gout cases are different, in my case I had it for several years and it became almost constant, striking at least every month for 9 months straight and lasting at least 50% of the time. So I was virtually out of commission. When I started taking the allopurinol 4 months ago, I actually got some pretty bad attacks that didn’t go completely away for 3 months, so I have only been without gout now for about a month. Finally they stopped and I think I am out of the woods now. From what I understand, for some people, as the uric acid leaves your body it causes your immune system to respond similarly to when it built up in your body. So it actually causes what feels the same as a gout attack. It takes time to clear all the stored up uric acid out of the tissues and joints. Once that (hopefully) happens then you are finally free. It is at first depressing, thinking the meds are not working, but if you know what is really happening, then it gives you strength to carry on knowing that you are really getting better and that it will eventually stop; it just doesn’t feel like it yet. Best of luck to you!
March 16, 2016 at 12:11 am #1026PatrickParticipant
Robert thanks for the kind words and the advice. I’m finally glad my Rheumotologist prescribed Allopurinol for me also. You are correct in your assumption that he is starting me off slow (100mg) and wants to see me again in 6 weeks with new blood screening results and discuss further treatment options. He discussed with me that if he didn’t see a significant drop in my Uric Acid, he would bump up my dosage to 200mg or 300mg, depending on where the UA was.
He also put me 0.6 of Colchicine to help curb potential gout attacks. I’m hoping that will help so that I won’t go through what happened to you with gout attacks happening as the crystals dissolve.
I’m hoping that my medications will help control my UA and I can go on leading my life the way I used to (with more knowledge of course). Thanks and good luck to you also
June 13, 2016 at 10:44 pm #1241
My toe has been flared up for 3 weeks. Pain level up and down. Went back to doc and received script for allipurinol. Had appt scheduled for today with Ruematologist and it was cancelled until August. I don’t know what to do. Do I continue the indomethacin and start the allipurinol? I have the 300mg but could split them if necessary. I feel like I am trying to treat this without any direction. Please help!
June 14, 2016 at 6:15 am #1243AnonymousInactive
Hi Fellow Sufferers..
I finally felt I understood what was happening with my gout and got it under control after reading the book “Beating Gout” A Sufferers Guide to Living Pain Free – Victor Konshin
In essence the recommendations were along the lines of the following:
1. After elevated uric acid is confirmed with uric acid test ( >6 mg/dL) commence taking a life time course of Allpurionol which assists your body excrete the excess uric acid from your joints, soft tissues and your blood.
2. Start with a low dose of 100 mg built to 300 mg over the course of a month but importantly never stop taking the Allpurionol (even during a gout attack) as this is what is excreting the additional uric acid in your blood, something your body is no longer able to do.
3. Commence a preventative course of anti inflamatories (Indomethacin and Cochiline) to counter potential and likely gout attacks as your uric acid levels stablise over the next 6 months. I think it was 1 x 25 mg capsule in the morning and the evening. Cochiline is 0.5 mg 3 or 4 times per day check the book.
4. At the first sign of a gout attack hit it hard with 2 x 25mg capsules of Indomethacin 3 times a day until the pain subsides. I don’t recall the doseage of the Cocholine but read the book.
5. The Allpurionol treatment should commence 4 weeks or so after an attack and when started it should never be stopped. It’s objective is to stabilise your uric acid blood levels to prevent future gout attacks.
June 14, 2016 at 6:17 am #1244Gout FoodieParticipant
First off I am not a doctor…..
Indomethacin is a pain and inflammation relief drug. It does addresses the symptoms of gout, not the cause. If it hurts take them!
The immediate cause of gout is elevated urate levels, the Allopurinol will address that, though the correct dosage is important. If your doctor put you on 300mg per day then follow his orders! It does seem high. I was put own 100. Self decided to go up to 200, (confirmed by doctor) the rheumatologist put me up to 300. That is only just keeping it in check.
You can Indo and Allo separately, together, whatever. Don’t take to much and follow doctors orders!
The question then arises: why are your urate levels high? You can try and reduce them by altering your diet. This may help, but in my experience not much.It may be you are ageing and your body isn’t working as well as when you were young. It could be genetic – you are prone genetically to this problem.
Meat and shellfish are known to be high in purines. I am vegan so I don’t eat that and I still get gout. I am currently experimenting with Soy. I think Soy may be bad for gout (for me anyway), but I am not yet convinced.
One important thing is weight. Are your overweight? I need to lose 10kg. The rheumatologist also said gout in and of itself is a symptom – an indicator that all is not well. He told me I must lose the weight.
Hope that helps a little.
June 17, 2016 at 10:52 am #1258
Hi again, Marilyn,
You got some great responses from Craig and Rod. I hope they help.
When I reviewed Beating Gout by Victor Konshin, I was very impressed. I remember thinking that if it had been around when I first got gout, I’d never have started GoutPal. Of course, you can’t compare a book to a website, but it is a helpful publication. I don’t know if it covers the latest professional rheumatologists recommendations for gout treatment. Certainly, be careful about using the book to get gout medication doses. They should come from a knowledgeable doctor. If you can find one!
300mg is too high to start allopurinol. It’s a serious health risk to do that. Best to change them for 100mg, so you can do what Rod advises. If not, splitting them gives you 150mg. 50 to 100mg is the clear recommended starting dose for allopurinol from the American College of Rheumatologists. So, best to split twice and start on 75mg per day.
What are your thoughts Marilyn?
June 17, 2016 at 4:04 pm #1263
Yes I have received wonderful information. I can’t get in to see a rheumatologist until August so when I found this website of folks that have gone through this, I was I would get some information to assist me. And I did.. Since starting the allipurinol the pain has subsided and the redness has decreased. The GP doc gave me the script for 300 mg, but I decided to cut in half after reading information. I am going to cut in half again based on your recomendations. Once I see the rheumatologist he can suggest my ongoing treatment.
Thanks again for providing great information..
June 17, 2016 at 11:18 pm #1265
That’s great, Marilyn. If you’ve been taking 150mg OK without any problems, then I would continue. My suggestion for splitting again, was just to be cautious, if you hadn’t started the allopurinol first.
I wish you continued success with your treatment. And I hope to read you’ve made a full recovery soon. 🙂
May 6, 2017 at 6:16 am #3598
Thanks for this great question, Alan. It’s very interesting to me for a few reasons.
Most importantly, your question highlights the problem of getting new gout research known to frontline medical professionals. Because, we now know that, for most gout patients, there is no need to wait for gout flares to resolve before starting allopurinol. So, that’s the quick answer to your question – start now.
Then, you ask, what will happen if you don’t start allopurinol now. So, again, the quick answer is, you will needlessly delay your admirable goal of wanting “to get to the root of the problem”
Now, I’ll indulge myself with a bit more explanation. Please feel free to ignore this if you wish. Because, most of it relates to the importance of your question to how I manage GoutPal.
Firstly, I searched for “should i start allopurinol now or wait until all pain is gone”. But, as you can see, there are no results that are relevant to your question. Because, it’s a fine example of the paradox of asking good gout questions. That is: you don’t know the best way to ask the question until you know the answer.
Incidentally, I get round that paradox in 2 ways:
– Either, you do exactly what you did, and post your question here. That’s the best way for most gout patients.
– Or, you start a structured help project. Which, requires time each week, but results in a more personal answer.
Next, I changed my search to “when should i start allopurinol”. So, I was delighted to see my complete explanation at the top of those results: Start Allopurinol Quickly, But Carefully. But, in reality, it’s not the complete explanation about when to start allopurinol. Because, I need to improve that page to reflect:
1. More recent science confirms the findings of the report I reviewed.
2. The message needs to be clear: this only works where the gout patient is confident of gout pain control during uric acid lowering. So, I believe this to be true in your case, Alan, as you refer to indomethacin with confidence. However, I’m slightly concerned that you don’t make any reference to uric acid blood test results.
3. I need to widen the scope of this key information to ensure it gets picked up by searches similar to “should i start allopurinol now or wait until all pain is gone”.
I hope that answers your question adequately, Alan. If not, please ask for clarification. Also, please feel free to ask more questions about managing your gout recovery. Because, I want to be sure that 2017 is the year you finally kill the root of your gout problem.
April 7, 2018 at 5:56 am #6836Alan StraubParticipant
Hesitant to start allopurinol
I am considering starting allopurinol but scared to death of stevens-johnsons syndrome. I can usually knock an attack out with one dose of med and be almost better the next day but i miss so much food i would like to eat and i miss not eating anything i want for a few days after attack. wondering how folks can take allopurinol when the side effect can be so deadly and gruesome. thanks much. ps also any tips on starting the med if i decide to?
April 7, 2018 at 6:14 am #6838nobodyParticipant
Understand that these attacks are damaging your body. Over time, this crap can eat into bone at which point it takes forever to get rid of it. It also increases your risk of developing stuff like OA.
Now you are correct that allopurinol is dangerous. So if you want to be safe, start with very small doses, increase the dose slowly, never take much more than you actually need and get your blood tested regularly for signs of distress as long as you are in the process of increasing your dose. You might also want to get a genetic test prior to starting the drug if you have East Asian ancestry.
April 7, 2018 at 11:28 am #6847d qParticipant
nobody has hit the nail on the head. Trust me, I’m relatively new to gout and I’ve only been taking medication for just over a year [side affects of Allopurinol made me move to Febuxostat instead and even now I’m in the process of working out if I’m OK to continue with it].
The lingering pain that I deal with day to day may or may not go. The response I get from rheumatologists is simply once your uric acid levels are down for a sufficient period of time we will have a clearer picture.
I’m no doctor but do a HLA-B*1502 gene test to get a little more information about your genes and maybe think about the outcome of not taking any drugs.
p.s. you haven’t indicated just how high your uric levels are?
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