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Nokka,
Just a heads up, but I started on 100-200mg of AP and my levels dropped to 4.5-6.0 (or somewhere around there). It was great at first because the initial lower dosage decreased my SUA to an acceptable range. The challenge is that once the “initial” acid is removed, your body stary\ts breaking down the solid crystals which once dissolved, can spike your levels back up above 6.5 and cause another attack (just like what happened to me).
So a long story short, when I started on 100-200mg of AP my SUA was between 4.5-6.0. I’ve now been on 300mg of AP for almost 2 months and my SUA is 4.5- 5.5 so the lower dosage would probably not be sufficient anymore.
To be perfectly honest with you nokka, at the same time I started AP, I developed a horrible case of bronchitis (that lasted 2 months) and also had quite a bit of stress and anxiety going on at the time so its very hard for me to tell exactly why I felt like crap lol. Was it the AP? probably. Did the other things make the AP side effects worse? Possibly. Anyway, to answer your question, the main side effects for about the first 30 days for me were:
– chest flutters/palpatations
– dizziness
– fatigue
– slight blurred vision
On a good note, I think the mild side effects are short-term. I perfectly feel fine now except for a couple chest flutters every once in a great while and of course some lingering joint pain. Like any drug, some peoples bodies just react differently. Like Zip has commented on in previous posts, he's never had a single negative side effect in nearly 20 years.
GoutPal said:
You've mentioned “healthy diet” a couple of times recently in a way that suggests that you feel it is not good for you. What do you mean by healthy diet?
I just meant that certain healthy foods like spinach, legumes, etc are bad for gout sufferers but otherwise would typically be healthy for the average Joe.
I think the important thing to remember is that its all about your numbers…NOT PAIN. If you have no symptoms but are running high 7's and 8's then there's still a potential problem.
First gout attack: July 12th 2009- end of Aug 2009
Started 100 mg of AP end of Aug 2009
Started 300mg of AP end of Sept 2009
GoutPal said:
Great points, cjeezy.
The occasional lower uric acid reading after a few beers doesn’t surprise me. Alcohol has several effects, one of which is that it promotes uric acid excretion. Beer also promotes uric acid production thus counteracting that effect, but if you are on allopurinol the second effect will be very much reduced.
It might even be possible to arrive at the optimum beer intake to maximise uric acid reduction, but very difficult to rule out other factors. Much better experiment than many I’ve thought of recently.
That's what I thought too GP, however here is the kicker; there have been times when I've had more than a few spirits or beers and levels were still very low. For example, a couple weeks ago, I was on a 3 day vacation that involved quite a bit of beer and walking. I did not test my UA while on vacation however I did the morning after I got home and had a 3.4 level. As I've posted many times before, I've tested my UA quite frequently over the past month and a 1/2 and while it fluctuates, its never (knock on wood!) been higher than 5.7 on 300mg AP. Ironically the highest my levels have been on 300mg of AP “seemed to be” during healthy lifestyle periods. This is where I'm confused. I don't drink that often, but I would think that when I did, it would shoot my levels up. Could crystals be forming still?
How long after a person eats or drinks something before they can get an accurate reading of the impact of what they consumed? How long before the food, purines, etc are out of the body to where they wouldn't effect a reading anymore? I feel a pun coming on about the last question 🙂
Hi Nokka,
RANGES:
The variance is by far my biggest frustration right now. While my ranges are good, I'm also on 300mg of AP. Im sure yours would fall in this range if you were on the drug too. Currently, your range might be right in the threshold you DON'T want to be in (ie: crystals dissolving, then forming, then dissoving, then forming, etc).
DIET:
My diet was fairly good before I developed gout (aside from having some beers w/friends on the weekend and eating the occasional fast food) so there wasn't much I had to change. The only major thing differently I've done with my diet is avoid red meat and limit seafood intake :(. It actually pisses me off that certain healthy foods are bad for gout sufferers. Seriously, how can you live a healthy lifestyle if its difficult to eat a balnced healthy meal?!?
PAIN and MANAGEMENT:
Originally my attack was in the right bunion area ONLY. Since starting AP, I've had some lingering pain in all kinds of my joints. espcially my knees (which I've NEVER had issues prior). I did take Colchicine for about the first week or so but stopped (2 pills daily in the AM).
AP vs DIET:
Again it's all preference and what I think may not be the right choice for another person. “At this point” I would rather take AP, live a healthy lifestyle and be able to eat foods in moderation and not worry. I always find it interesting that people are so reluctant to take this medicine. I guess the question is “whats worse for your body, high UA or AP?” While there is always a chance of side effects (even with AP), I would rather attempt to be in the majority of successful “takers” than be miserable for the rest of my life always worrying about “can I eat this” or “can I drink that” or “I hope I don't feel bad when I wake up tomorrow.” Someone can correct me if I'm wrong, but I think many of the adverse AP effects can even be reversed if caught early. I'll of course have the standard Liver Panel tests and stuff done over the years just to make sure my body is ok with the drug. If I have to be on this drug for the next 40+ years then oh well. At least my “quality” of life will be improved as I NEVER want to go back to the type of pain I had during my first attack. In terms of your “how long I felt ok to do so” question, I started returning to normal diet and exercise as soon as I started 300 mg of AP and my acute attack was over (of course I monitored my UA regularly…probably too much lol). The funny thing is that my UA is often (not always) lower after a night of a few beers than my average. Go figure. I don't think it's because new crystals forming though because I haven't been above 6 since starting AP and I tested frequently.
Again, these are just my opinmions and experiences but I hope they help you and there is a lot of good info on this board. Time and trial and error is unfortunately the only thing that will show how your life will be impacted from this horroible condition.
Nokka,
Your variations don't seem uncommon. Right now, mine have been ranging from 3.5 -5.5 after a month and a half of 300mg of AP. It's all personal preference whether you want to lower UA with a drug or lifestyle change. I'm in a similar situation as you. I don't mind eating more veggies, but am not prepared to be a complete vegetarian. For me the choice was simple, I could worry about gout every single day because I'd really have to focus on diet, or I could take 1 pill/day and not have to worry about it so much. I like eating healthy, but with gout, even many healthy foods are not good for the disease so AP will help with that. I may try and cut back to 200mg in a year or so IF I do not have any attacks, but thats far down the road. If you start AP while overseas make sure you have some Colchicine on hand to abort any potential attacks.
Stay strong
Lol. You are correct on over testing. The funny thing is I cut back, but only started monitoring again closely because I was moving closer to 6. Hopefully levels will stabalize around low 4 and 3's once more crystals are dissolved
Ok sounds like a plan. Do you think after 6 months that's when fluctuations in UA would not be as drastic because most of the easier reached urate has been dissolved? My levels have been all over the board the past couple weeks ranging from 3.3- 5.6. I'm assuming that after 6 months I'll probably stabalize around 4ish…I would hope. I'd hate to have to go up to 400mg of AP.
I've just heard of gout and pseudo-gout. Both are forms of arthritis, but one is from urate crystals and the other I believ from calcium build up. I'm sure someone else will chime in
To touch on this again since I started the post a little ways back. It's now been a little over month on 300mg of AP. I still have sore knees and pinching in various spots on both my feet (arch, bunion, tops of toes, bottom of feet, etc). I've never had knee or foot pain problems in my life…ever. I can live through this now, but sInce my first attach in my right bunion (and starting AP) I have pain and soreness all over at times. Will this subside with time or is this pain going to come and go forever? I have not been taking Colchicine lately either because I do not think the pain will develop into a full blown attack. I wouldnt think Ive done any major joint damage since I only had 1 bad attack in my life.
I undertand that I always will have gout. I didn't necessarily mean “all urate would be cleared out.” Just meant enough to where it is not dissolving as much because most of what can be cleared has been liquified already. So if UA goes down when crystals deposit, does that mean my 3.5-4.5 was lower due to that? I'm confused now
Thanks Tavery. That makes perfect sense I just don't know if my increase in UA is due to crystals forming or dissolving (I'm assuming dissolving). So the first type of crystals should dissolve rather quickly. I'm assuming within a matter of weeks so mine are probably gone. I'm wondering about the 2nd type and how long it will take for my numbers to stabalize. So a couple questions:
How long do I wait for levels to stabalize?…until another attack? until I exceed UA of 6, 1 yr, etc?
If I've seen my numbers between 3 and 4 75%+ of the time. Would that indicate that's the range I would stabalize at once urate is cleared out? And should I be concerned with this 5+ level I'm currently at?
In regards to the last sentence you said “producing new crystals as fast as the old ones dissolve,” how can new ones be forming if I'm never above 6?
How are you feeling? How's your treatment going? Did you move up to 300mg?
So would it be safe to say that the 5.5 is temporary and the 3.5-4.5 will most likely be the actual almost all the time “once there are no more crystals to dissolve?”
You hit it right on the head. I would get a UA test. What good is 300mg if you have UA above 6 at times? It sounds like you might be right on the threshhold of the correct dosage.
And to clarify on the increased dosage, that is for 1 day only and then stop taking it al together. This is not a dosage you take everyday
If you're in the middle of an attack you'll probably need much more than 4…Took me I think 10-12 in a day to finally rid myself of major pain. Problem is I dont think any Dr will tell you to take that many. Just my opinion
trev said:
Post edited 9:33 am – October 13, 2009 by trev
Although allopurinol is usually well tolerated, it may cause adverse effects that need a discontinuous use, in about 20% of patients.
Hi Trev,
I'm a complete newbie, does this % sound accurate? I've never heard of adverse AP side effects being 20%. So what thats saying is that AP cannot be used in 1 out of every 5 people. Just seems very high to me
2nd2none said:
you can keep taking during the attacks. That makes it a lot easier to manage.
Same thing with Allopurinol. While you were getting pain on AP, that was probably a good sign that it was working. Some Colchicine would prob do the trick to help in conjuction with that drug. Have you discussed with your doctor going off Uloric and starting AP to see if your kidneys improve?
Hi 2nd,
It could have just been that you were on to low of a dosage of Allop at the time. Couple questions: did you have regular UA tests in the beginning of your treatment?. Did you ever increase your dosage? Did your Dr specifically state that Allop would not work for you? As many will attest on this boardan Allop is a waste if you do not have the correct dosage.
Just curious what dosage of Allopurinol were you on? I think acceptable dosage ranges from 100-800mg. Anyways I hope you get to feeling better soon!
While 5.0 or even 6.0 may help me be gout free “most of the time,” that is not good enough for me. I want to live gout free “all the time.” I want to exercise, eat and drink what I want without worrying about this stupid disease. So I guess it just boils down to what's your magic number and how much do you want to put with? A UA of 5.5 isn't helpful if it jumps to 7 while I sleep :). Maybe I'll I'll eventually try and ween back down to 200mg of AP, but I think I'll worry about that once I can go a while without any pain
Oh now thats a different story 🙂 I'd prob be dead if I drank that much in a day. Isn't that like 15-20 shots a day for 2 weeks? LOL
Since we are in a very similar situation and have generated similar numbers on similar AP doses, it wouldn't surprise me to see your numbers fall around 3 after fasting in the near furture. I think consistent readings are good, however I had consistent readings of 4-6 for 2 weeks and still ended up having an attack. I think numbers consistently 4 to low 5's is very good since you'd never be approaching the 6.4 mark. Keep us posted on how you do
