July 29, 2017 at 12:17 am #4834
Hi…I have had gout for several years.
My rheumatologist put me on 400 mg allopurinol going on 2 yrs. Recent blood check put me at 6.5 Uric acid level. 61 yrs old overweight all my life. I’ve had attacks all over now in my knees.
Prednisone tapers have been my go to fix. Had surgery on both toes to remove tophi..previous knee attack was bad..they drew tophi out of the knee..prednisone taper 42 pills. Finished those and right back it came..finished another taper and now it’s right back again.
Frustrated and unsure what to do. Quit alcohol red meat shellfish high fructose corn syrup months ago. What am I doing wrong they won’t stop..!! Am I still flushing going 2 years with 400 mg of allopurinol!?
July 29, 2017 at 12:39 am #4836d qParticipant
I’m sorry to hear about your experiences.
Is there a reason why your rhumatologist hasn’t increased your allopurinol dose? as you could be going through what’s called gout hell where crystals are dissolving and reforming.
The reason I say this is because if your uric acid level is 6.1mg/dl you are literally in the worst possible gout recovery position to be in. Have a read of this: http://www.goutpal.com/9942/ouch-why-does-gout-recovery-hurt/
I’m no doctor and you should consult your rhumatologist first but it seems your allopurinol dose definitely needs upward adjustment.
July 29, 2017 at 1:32 pm #4840
6.5 mg/dl is definitely too high.
In addition to what DQ just said, in case there is a reason why more allopurinol might be dangerous for you, there are other drugs you could take either instead or on top of allopurinol.
Going by what you said about your tophi, you might be one of the gout sufferers who would benefit from very aggressive medication. There is evidence that having very low amounts of uric acid in one’s blood benefits people who have sizable tophi. In any case, 6.5 would be too high even if you had no tophi. Possibly it was an anomalous test result but I wouldn’t count on that.
So I would very much encourage you to broach the topic of more aggressive medication with your doctors. And don’t let them brush off your concerns!
You could also try more dietary changes but I think getting more appropriate medication should be your priority right now.
July 30, 2017 at 8:05 am #4849Keith TaylorParticipant
Thanks, d_q, for mentioning Ouch! Why does Gout Recovery hurt?
I’ve added some extra notes about getting uric acid levels safe. So, hopefully, it is more relevant to Bob.
Bob, I feel you have been let down by not getting the correct uric acid lowering treatment to get your uric acid safe. Also, in the light of that negligence, I worry that you might not have the right safety monitoring of your treatment. Because when you get tested for uric acid, you should also get blood tests for kidney function, and for liver function.
That way, you can be certain that allopurinol is working for you safely. So, if it is, the obvious solution is to increase your allopurinol dose to get uric acid levels safe. Usually, that would mean increasing by 100 mg and retesting until you achieve a low enough level. Alternatively, your doctor might advise supplementing allopurinol with additional uric acid meds.
Finally, Bob, I realize this might be shocking after you’ve done all you can to “do the right thing”. So, please feel free to discuss any doubts and uncertainties you might have.
July 31, 2017 at 3:10 pm #4861
Thanks for the response..I have a call into my Rheumatologist..following up with your suggestions. I need to confirm my uric acid level readings from the last few checks..I know they told me (nurse) that I was in the normal uric acid level at last read 6.5. I remember when I had my previous serious attack with tophi aspiration that she said it was 3. Confused..My liver and kidneys checked out ok per my GP and Rhuem. My currant attack has put me in bed,I couldn’t bed my knee to sit. No prednisone this time just advil, that saved me going to the ER. Today I can bend it a little. I stressed out for the last three days not wanting to put anything in my mouth but tons of water and some tart cherries. Ended up with a plate of salad with a tiny bit of dressing as grilled chicken was fed to my family. Anxious to communicate with my Dr. I kinda explained to the messenger on the phone this a.m. Let ya know what happened. ( I told her 6.5 may be ok without gout but not with) FYI
July 31, 2017 at 3:41 pm #4863Keith TaylorParticipant
Thanks for the extra info, Bob.
I look forward to seeing more of your uric acid blood test results. Because that’s the heart of controlling gout.
But, controlling attacks is something entirely different.
I realize ER can be difficult, and shouldn’t be necessary. So, I have always relied on Advil. But, when it hasn’t given me enough relief to stay active, I backed it up with Tylenol. Initially, I found that combo in a hospital. But, other doctors have backed it up. Also, friends but some say take them together and others say alternate every 2 hours or so. I think the best thing is to phone a doctor for advice or check your local pharmacist. Please don’t just take my word for it. Because medicine has to be professionally considered and I have no qualifications.
July 31, 2017 at 3:56 pm #4864
I’m going to be brief because the forum software threw away my reply (that’s what it does when a post is moved).
You shouldn’t starve yourself. It won’t help your gout.
In particular, you need proteins. If you’re avoiding meat you need to eat lots of dairy. That or a combination of bean-type and cereal-type plants.
Even if you’re trying to lose weight, you should do it slowly and sustainably. A diet which would kill you within months if you stuck to is nowhere near sustainable.
It would be best if you could get your uric acid test results in writing. You need to know what your typical level has been since you’ve been taking allopurinol. It would be odd if it really varied between 6.5 and 3.
August 2, 2017 at 1:10 pm #4904
Update on attacks won’t stop with Allopurinol
Hello…reporting back on my visit with my Rheumatologist Tues. I have to clarify my wrong information…I had stated I was told my blood level was at 6.5, I was actually at 4.5..I don’t know where the 6.5 was from, I guess I heard it wrong. Anyway she is putting me on Uloric 80mg to start with colchicine daily. My UA level had been in the 3.8-4.5 range the last few readings. I cannot start the Uloric until my current attack in my knee is gone. Well the knee attack is now 95% gone after 5 days of veggies fruits yogurt milk and lots of water..more than I ever drank. So now I thought I bruised the ball of my foot, waiting for my shoe insert adjustment, and last night..Bam…I’m pretty sure gout has returned to my underside of my second toe, and maybe, I thought, I had bruised the ball of my foot…I can’t start the Uloric ( if I can afford it) until my flare ups stop. I am supposed to get on the Colchicine when the pharmacy has it ready. Thoughts comments??
August 2, 2017 at 5:05 pm #4906
Good news about your test reults. A 3-6.5 range would have been strange!
Possibly the confusion was caused by mixing units. If your range has indeed been 3.8-4.5 mg/dl (as opposed to 380-450 umol/l for instance), you have been on your way to recovery for a while. But maybe your recovery would be quicker with stronger medication…
I don’t know if Uloric is right for you. I take it myself so I’m not saying it’s a bad drug but it is dangerous. So is allopurinol but we know your body handles allopurinol and it might possibly do better with a larger allopurinol dose than with Uloric.
One of the things which makes Uloric dangerous is that doctors often don’t know why or how it should be used. I guess it makes sense in your situation to follow your rheumatologist’s advice and switch to Uloric. But there’s no sense in being reckless about the switch.
Firstly, when starting Uloric it is very important to get blood tests to monitor your liver function in particular. Second, you don’t need to start with 80mg which is a very strong dose. It would be safer to start with a lower dose for a couple of weeks, get a blood test and increase the dose if the test raises no red flag. People have started with doses as low as 10mg but I guess that would be impractical in your case. Lots of people start with 40mg (there are 40mg Uloric pills) but if you wanted to play it safe, you could try to cut the pill in half in order to take 20mg for your first few days on the drug. Just don’t start with 80mg.
It’s also best not to start another drug at the same time as Uloric so it would make sense try colchicine first and see if it gives you a break from your serial attacks as well as what side effects you get (if any).
I don’t know if a diet consisting of “veggies fruits yogurt milk” is safe and sustainable in your situation but at least you can get the proteins you need from yoghurt and milk if you consume large amounts and are able to digest them. Most people would benefit from adding other types of plants such as cereals to that diet however. That way, less dairy would be required.
Your are probably going to be suffering from these joint problems for a while still so you need well-considered and sustainable solutions.
August 14, 2017 at 10:46 pm #5169John TempleParticipant
Ask your rheumatologist about Krystexxa. See my response under the forum topic “Can I Liquify Tofi…”
It can get your level down and dissolve the tophi but can cause more painful gout for a couple of months. It’s extremely expensive but gets the job done.
August 15, 2017 at 2:24 pm #5184
Hello again..As I mentioned in my earlier post my Rheumatologist wants me to switch to Uloric when I have 3 weeks of no attacks. I didn’t think three weeks would happen. Being my UA levels have been 4.5 or lower and no red flags with liver and kidney check ok , I have read info here and everywhere, how to stop it…well since 4 days ago I have been gout free…???..I read where a few cases it took eliminating all fructose, fruit and all…no sugar period!! I stopped all sugars 4 days ago..no fruit no added sugar…coincidence?? I don’t know, all I know the last 4 days I have been pain free. I am waiting to see if it holds..my best hope yet! As happens to me usually..the minute I say things are alright, Bam..back to Ibuprofen and joint rest. She has me on 5 mg prednisone and 6 mg Colchicine daily so go figure..will report back in a few days…not sure I want to start over with Uloric??
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