GoutPal Interactive

Miles. Great news!

Could you describe your regime more fully? – Amounts, frequency, alone/mixed with food etc.

There is a chance ,that if taken all the time, it may lose impact in the 'bad days'.

Also – How much is 'Too Much?' 

Very interesting reading the comparisons of the two med's. i have had gout for about 5 years.

i am 48 in good health otherwise. at the start of 2009 i was resigned to live an even more healthy life style to try and cope with my 6 or 7 gout attacks a year. to this end i cut out beer, my big weakness, for the first 100 days of the year and started a fairly rigourous exercise regime. to my surprise the gout got a lot worse. i could not go more than a 7-10 days without an attack, ranging from 3-6 days. in may i went to see a rhumatoligist who though at a loss to explain the increase in attacks said the bottom line was that the level had to be reduced to below 6. i was at

about 7-9. he prescribed allupornol 300 along with a colcochine 0.6. i thought about everything he said and while i was waiting to pick a good time to start the allupornol i decided to try an experiment. i had only used colcochine previously as a pain killer when stricken so i decided to try it as a preventitive. i thought if 0.6 is a standard preventive dose i will try 2 or them and since 95% of my attacks showed up at nite i took the two 0.6's just before bed. that was may. this

is the end of oct. and i have not had one attack since. i did phone the rhumatologist before embarking on this experiment and got his blessing. i have yet to start the allupornol but plan on doing it very shortly as i know the cholchochine will do nothiong to lower the uric level.

i am just telling my story for information purposes but i also have  a question. i believe it was Robert who said there should be no flare-ups after you reach the below 6 level but from my reading the uric acid level has been building since puberty and has been deposited in the tissues as well as joints, ligaments etc during attacks. would it not continue to disolve for a period of time after you achieve the below 6 level in order to rid your body of all the excess uric thats been built up there over the years. and if so does anyone know of a time line from when you reach the below 6 level and stay there until you can be sure to have no further gout attacks assuming you stay below 6.

thanks for any information offered.

denis

Post edited 8:42 am – November 19, 2009 by Chelsea

Hi Denis,

The pain you are experiencing is actually due to an inflammatory response to the dissolution of crystal deposits…It is uber confusing that this same inflammatory response can be generated by either a dramatic increase of uric acid (a gouty attack) or a dramatic decrease of uric acid (which happens when you take Uloric or Allopurinol).  The take-home message here is that you want to focus on lowering your uric acid levels in order to reverse and to prevent future tissue damage.  Colchicine is great for reducing pain caused by inflammation of uric acid crystal deposits in your joints, but what are you doing to reverse and to prevent future deposits of uric acid in the first place?  That's where Allopurinol plays an important role in managing your gout.  Take it to as high a dose as your doctor recommends (as high as 800mg for non-renal impaired patients).  If you can't take a high enough dose of Allopurinol (you have a reaction to Allopurinol, have renal insufficiency, take multiple meds, or don't find the medication to be effective for whatever reason) to get your uric acid below 6 mg/dL, that's when you should try Uloric.

Again, the important take-away here is that you do what it takes to get and keep your uric acid levels below 6 mg/dL so that you don't end up with those horribly damaged joints that so many people with gouty arthritis (aka gout) figure is par-for-the-course.

I hope people find this post helpful.

Option

I met one of my contractor who built my house yesterday. He had Gout for 20 years and was on Allopurinol for most of the time. Recently he found that Allopurinol was not as effective as it was before and he was getting some pains and minor gout attacks. He showed to the doctor and was  moved to Uloric 3-4 months back and since then his pains have subsided.

He seems very happy with Uloric.

I'm not sure I'm posting on the correct forum, but Robert the drug rep seemed pretty familiar with Uloric, and my question is about the merits of continuing Uloric despite an itchy skin rash.    I'm looking for guidance from anyone that wants to contribute. 

My husband took Uloric 40 mg. for a couple of days and developed an itchy skin rash.  He has a history of severe dermatitis and I discontinued his Uloric after a few days because I thought the side effects of corticosteroids to treat the dermatitis were worse than an elevated uric acid level.  After reading comments on this forum about the consequences of a uric acid level >6, now I don't know what to do.  If he resumes Uloric again, will the skin rash just kleep getting worse?  Also, my husband has no gout symptoms, and the PI says not to take Uloric if the patient doesn't have gout symptoms.  Robert, if the patient has no symptoms, but has a high uric acid, is it true that Uloric should not be taken? 

My husband is 74 y.o., 150 lbs.  From 1997-2007, he had severe allergic contact dermatitis to airborne plant allergens.  He finally had patch testing which determined he was allergic to many of the weeds that grow in the area of our country home.  Once he stopped mowing and grading our dirt roads, his skin cleared up for a period. 

However, he started taking Namenda, a dementia medication, 1 month after the patch testing.  After being on Namenda for 7 months, he developed a skin rash in various places on his body which had very different characteristics than his prior dermatitis.  At the time, I didn't realize what was causing the rash, and he continued on Namenda.  After taking it for 1 year, his annual blood work showed a marked decline in kidney function.  His prior normal values changed to a serum creatinine - 2.08 mg/dL [0.8-1.3], BUN - 41 mg/dL [7-18], eGFR-f 31 mL/min/1.73 [>=61], uric acid – 10.3 mg/dL [3.5-76.2], and urinary micro/alb/creat ratio of 80.  He was at the very low end of moderate chronic kidney disease.  Two months later, finally finding and reading the Prescribing Information lead me to believe that Namenda was the culprit.  After testing and based on my information, the nephrologist agreed my husband had allergic interstitial nephritis.  His BP and liipid values have always been normal and he has no risk factors for kidney disease other than the Namenda use.

The last of the raised papules from Namenda rash finally cleared up a couple months ago, but he still has places on his legs and hands that are very itchy, and the skin on his face and neck is dry, red, and very flaky.  

I was hoping his kidney function would improve once he was off Namenda, but 6 months later his Uric Acid has only dropped to 8.9 mg/dL.  His creatine is now 2.1 mg/DL. 

Because of his moderate stage CKD and history of skin problems, I didn't want to try allopurinol.  We pay $3 for a 90 day supply of medication, so the cost of Uloric was not an issue. 

I'm familiar with the agony of eczema-like dermatitis, and I sure don't want my husband to head there again.  But it sounds like a high uric acid level may ultimately lead to it's own agonies, even though my husband is apparently not suffereing overtly from it right now.  And his dementia is far enough along that I cannot understand him much of the time, so it's hard to know how he's feeling.

Should I restart the Uloric or try some other strategy?

zip2play,

Thanks for your response.   My husband was on Namenda for 15 months and has been off it since mid-April 2009.  His skin and rash improved considerably within a week of discontinuence, so I and the nephrologist have no doubt the Namenda was the culprit.  I was hoping for more improvement in kidney function by now, but I suppose there may be permanent kidney damage.

Ironically I saw no cognitive improvement from the Namenda.  In 2008, while on Namenda, my husband also tried Aricept for 2 weeks, but he became agitated and belligerent, so we stopped that.  I am now leary of any prescription medicine for him.  It's hard to tell whether his skin reactions are an allergic reaction to a medication to just a flare up of his hypersensitivity to more benign triggers.  He also was diagnosed 3 years ago with CLL/SLL, a type of leukemia/lymphoma.  He has never received treatment for it and his condition has since apparently regressed according to his bloodwork, but he probably has a wonky immune system.

I will check back with the nephrologist now.  Since my husband doesn't have gout symptoms, I was content to just stop the Uloric.  However, this site has impressed upon me the negative consequences of a chronically high SUA, something I wasn't aware of before.  So I realize some kind of action is needed.

Living with a loved one with dementia is like living in an Alice-in-Wonderland world.  It has it's unique challenges, but I'm grateful my husband is not in pain.  I don't want to compound the situation by having him also develop gout.

GoutPal,

I wonder what distinguishes those hyperurecemia patients with gout from those without gout.  Makes me think there is another factor other than just uric acid levels.

Nice to know there might be another option for lowering uric acid.  I'll read up on probenecid.  Thanks for that information.

I'm still wondering about this statement on the Uloric PI:

“ULORIC is a prescription medicine used to lower blood uric acid levels, only in adults with gout.”

I interpret that to mean that if a patient doesn't have gout symptoms, they shouldn't be taking Uloric.  So was it a mistake for my husband's nephrologist to prescribe this to him in the first place?

Lynn

Lynn_M said:

zip2play,

Thanks for your response.   My husband was on Namenda for 15 months and has been off it since mid-April 2009.  His skin and rash improved considerably within a week of discontinuence, so I and the nephrologist have no doubt the Namenda was the culprit.  I was hoping for more improvement in kidney function by now, but I suppose there may be permanent kidney damage.

Ironically I saw no cognitive improvement from the Namenda.  In 2008, while on Namenda, my husband also tried Aricept for 2 weeks, but he became agitated and belligerent, so we stopped that.  I am now leary of any prescription medicine for him.  It's hard to tell whether his skin reactions are an allergic reaction to a medication to just a flare up of his hypersensitivity to more benign triggers.  He also was diagnosed 3 years ago with CLL/SLL, a type of leukemia/lymphoma.  He has never received treatment for it and his condition has since apparently regressed according to his bloodwork, but he probably has a wonky immune system.

I will check back with the nephrologist now.  Since my husband doesn't have gout symptoms, I was content to just stop the Uloric.  However, this site has impressed upon me the negative consequences of a chronically high SUA, something I wasn't aware of before.  So I realize some kind of action is needed.

Living with a loved one with dementia is like living in an Alice-in-Wonderland world.  It has it's unique challenges, but I'm grateful my husband is not in pain.  I don't want to compound the situation by having him also develop gout.

My dad has Lewy Body disease which is a form of dimentia  , he started on aricept and had a bad reaction to it.. so we tried razadyne ,which is similar and he has tolerated it well for a bout a year now and there has been improvement in his condition.. he also takes namenda without a reaction.. but you may want to give razadyne a try…i feel for you and know it is a unique challenge.. good luck

Lynne, we are the cutting edge of gout understanding on this.

Personally, I feel there are a lot of misunderstandings about “asymptomatic hyperuricemia”. New imaging research is proving that joint, tendon and cartilage damage often occurs in high uric acid subjects with no typical gout flares.

There are unexplained links between high uric acid and increased risk of heart disease, stroke and diabetes.

Some doctors perceive the risk of high uric acid higher than others, and so whilst the official line is not to treat excess uric acid if there are no clear gout symptoms, the more cautious doctors take the view that it is better to be safe than sorry. Of course, this is a close judgement call, as the doctor has to balance the inherent risk of any drug against the risk of doing nothing.

To answer your first question last, there have been various studies into high uric acid without gout, and specualtion about a factor that restricts uric acid crystals forming, or perhaps lack of a factor that causes crystallization. I raised this very question about a potential inhibitor of uric acid crystallization earlier this year, but unfortunately, I have no further information.