October 6, 2009 at 5:12 pm #3015
I love this forum and wish I had found it earlier, anyway here is my story and hope it helps others.
I am in my forties and have had gout since I was 18. It become worse and worse over the years. Colchicine was the answer most of the time. Toxic levels are close to therapeutic.
Anyway in runs in my family and my Uric acid levels run as high as 12.5.
I tried everything that was on the market and noting lowered my levels. Even eating correctly.
So when I heard of Uloric I just could not wait. Long story short it QUICKLY dropped my levels from 12.5 to 6.1. With that came the attacks as expected. Seemed none stop. I felt I could ride it out.
Except for the gout I am very healthy. Ok two months later I am rushed to the hospital with 104 fever, my urine is dark. I have been told my kidneys are failing. I have large amounts of blood and protein in my urine. I have stage 3 CKD.
I have read in some places that less then 1 percent of uloric users have blood and protein in their urine.
So here i am, doctors do not know enough about uloric to say it is causing the problem. Million dollar question, is uloric causing this or am I dieing from sudden kidney disease?
I really hate to stop uloric as my numbers will jump and I'll be hurting. Maybe once most of the crystals are gone my kidney will bounce back.
Anyway just a word of caution, be safe.
ThanksOctober 6, 2009 at 6:17 pm #5967
Oy, how awful.
It sounds like a case of Rhabdomyolysis…a terrible scourge. Are you taking any other drugs that might contribute, like statin drugs, ketoconozole, or any macroliide antibiotics.
Did you think of trying allopurinol BEFORE going to febuxostat? Why not?
Thanks for the warning on this new drug,,,I've always been suspect of new drugs.October 6, 2009 at 6:56 pm #5969
Hi thanks for the reply. No it's not Rhabdomyolysis. I wish all my Doctors would work together to connect the dots, oh well one day at a time.
Oh I did try allopurinol many times, just did not work. Uloric is amazing just wish there were more studies for kidney effects (if any)October 6, 2009 at 7:14 pm #5971
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!October 6, 2009 at 7:28 pm #5972
too long ago to remember..but the Uloric is 40mgOctober 6, 2009 at 7:41 pm #5973
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.October 7, 2009 at 1:19 pm #5988
So, reading between the lines you went ON allopurinol and the OFF allopurinol a long time ago.
Can you try to remember the specifics? Why did you stop? How long before your gout got intolerable enough to stat febuxostst?
My simple nostrum: “Take NEW drugs only if your life depends on it.”October 7, 2009 at 3:38 pm #5990
Ten or so years back the gout was a once or twice a year thing. So when I tried Allo. perhaps I did not give it may all. What it did everytime was cause a bad gout attack then I had to stop and try again. The Uloric you can keep taking during the attacks. That makes it a lot easier to manage.
I am so drug phobic that it is so not like me to take a drug freash on the market. But uloric does what it does so great. Just not sure if it is causing the kidney problem. I know if I stop the UA will fly right up again and it is all for nothing.
thanks for the repliesOctober 8, 2009 at 2:48 am #5995
I am just starting Uloric therapy at a 40mg dose once a day. I have already been taking 0.6mg of Colchicine twice a day, 20mg of prednisone once a day and 500mg of Naproxen once a day. My specialist advises that the goal is to be sure and steady and to try to avoid ups/downs/spikes. At this point, the only thing I know for sure is that life without prednisone is unliveable. My specialist cautions me that the prednisone is only a temporary treatment until the UA level becomes steady and low. Seems all I can do at this point is to wait and see and make sure I remain hydrated.October 8, 2009 at 6:35 am #6004
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?October 8, 2009 at 9:38 am #6010
Not to sound like a broken record but it REALLY sounds like you had an attack of Rhabdo…brown urine, fever, kidney damage…did you have muscle pain?
In any case, EVERY DRUG you take , even your vitamins, should be taken only with the careful and specific approval of a good nephrologist.
(Do you know your glomerular filtration rate?)
You just cannot risk the destruction of your kidneys…not an option. What I would consider is stopping the Uloric for a month or two and see if your kidneys improve. Perhaps switching to 300 mg. allopurinol to keep your uric acid low during the test period will be an even better idea. THe drugs are very different so they are very unlikely to have the same side effects.
IF, a big IF, uloric is destroying your kidneys it MUST be discontinued so your goal is to flesh out that IF with a little experimentation.
Have your kidneys been sonogrammed or MRI'd to see if there are any stones from the years of untreated gout ?
And just for the record, once started on allopurinol OR Uloric you continue taking it during attacks. Starting and stopping either of these drugs is no different from a diabetic starting and stopping insulin. These drugs are FOREVER unless an intolerance intervenes (like renal failure.)October 8, 2009 at 9:50 am #6011
Zip, your point about starting and stoping therapy is one my specialist has been stressing from the beginning and probably more important than which particular therapy a person may be on. Up/down spikes are sure to be problematic and only prolong the inevidable. Or at least that is what I’m gleaming from what I’ve been reading here and else where.October 8, 2009 at 6:42 pm #6015
Thank you so much guys!
Sure enough my Dr took me off Uloric. I am sad as it really did it's job uric wise but like you guys said the risk is high on the kidneys.
There may be no connection at all BUT it must be ruled out. I think the flood of trash suddenly going into my kidneys may have messed me up.
However now I have nothing, and the acid is sure to rise badly. I cannot take Colchicine anymore do to kidney risk and no NSAID. I pray for no attack because to go cold turkey may be worse then death. lol
I am on 5mg pred. It was 10 but my blood pressure was an issue.
I wish you all well and pain free. thanks againOctober 9, 2009 at 4:03 am #6018trevParticipant
2nd- Surely now is the time to cash in on your lower UA level by giving AlloP another try as Zip suggests?
if you're prepared to sit out till an attack hits -why not risk some early pain that will at least keep you on track, UA wise?
One reason for not starting drug therapy is the need to keep going with full term- but to stop now seems counter to all advice here -unless AlloP produces allergy or serious side effects. It will need 6 months by all accounts, to settle the matter one way or the other -on adequate dosage.
If you can afford to see it through 'alone'- with inevitable income loss ,pain,etc. this is the same track you plan as myself currently, so this is not criticism in any way.October 9, 2009 at 8:52 am #6022
Richard Bell said:
Zip, your point about starting and stoping therapy is one my specialist has been stressing from the beginning and probably more important than which particular therapy a person may be on. Up/down spikes are sure to be problematic and only prolong the inevidable. Or at least that is what I’m gleaming from what I’ve been reading here and else where.
I could not agree with you more. I have not missed my allopurinol for more than a half dozen days in 20 years. Once started it, and uloric should NEVER be stopped…with ONE exception. And that exception there is the real possibility that the drug might cause kidney destruction and death…that overarching concern supercedes ALL other considerations. The same goes for ANY drug…as Hippocrates said “First, do no damage.”
Seriously, 2nd, why not take allopurinol while you judge the effect on your kidneys of the absent Uloric. Incidentally, your years of untreated/unrealiized gout may very well have CAUSED your kidney damage. Have them MRI'd for signs of stones.
Do you know your GFR? If not, ask your nephrologist.October 9, 2009 at 3:44 pm #6030
Great idea guys of switching to alloP now. Since my UA number is nice and low. Dr should of thought of that. Going to fax him now.
ThanksOctober 14, 2009 at 1:51 pm #6093
Well I called the Dr and asked about starting alloP now while the UA levels are low and he said…NO.
What a drag, now I have to sit and watch my levels go up. I cannot take anything if I get an attack because of the kidney problems. And once he sees that maybe the Uloric is not the reason for my kidney problems I will have to go through the detox of dropping my levels and getting attacks again. Bad day!
I have seen this Dr. ten years. he is the best hands down in my community. I am headed for a world of pain. Gout attacks with no form of medical relief.
What next…October 14, 2009 at 3:57 pm #6094
I would get a 2nd opinion from another doctorOctober 14, 2009 at 7:27 pm #6101
It sounds like your doctor will allow no alternatives to Uloric…have you asked him why he thinks it's Uloric or nothing.
(I CAN think of one.)
Have you asked him to explain WHY what you suffered was not an attack of rhabldomyolysis. Rhabdo IS the destruction of the kidneys when flooded with a load of poisons. If not what then WAS it?
I also would find another doctor.October 22, 2009 at 2:30 pm #6191
well thank you to everyone who has replied with their thoughts.
Things take a big change for me yesterday. My kidney Dr. reversed everything my rheumatoid dr did. He immediately put me back on Uloric. He said that in just one week of being off Uloric my uric acid had gone from 6.1 to 9.8 (and that is while on a renal diet) He said any risk that Uloric may cause is outweighed by the risk of uric acid on the kidneys.
I am now down to 39 percent kidney function. Sadly I may have to go with new gout attacks to get back to 6 but worth it.
I guess I will never know if the Uloric caused the kidney problems or it was just a coincidence.October 22, 2009 at 4:58 pm #6192
Well, thank God you were not forced to endure a uric acid of 9.8 or even much higher as the weeks went on.
Yes, hyperuricemia is a kidney killer.
Please tell me your GFR. Please?
Amazing how fast your numbers shot up. Here's my conjecture: human kidneys excrete uric acid very poorly, damaged human kidneys excrete it very VERY poorly and once you started producing a normal amount without excreting much…BAM!
My reasoned guess is that you are more of an underexcreter rrather than an overproducer. What does your nephrologist think about a uricosuric like probenecid. (I have no clue on whether or not damaged kidneys will tolerate it but he should know.)
You probably have hypertension…if so make sure that you add losartan (Cozaar) to your regimen!October 27, 2009 at 11:28 am #6250
Thanks for the concern.
It is so complicated, a little of a fight between my nephrologist and my rheumatologist. Rheumy says off the uloric as a precaution. Since this kidney issue started the same time I started Uloric.
Neph says uric acid is a kidney killer, get back on the Uloric.
Who knows what to do. Both are very good Doctors.
I worry that maybe just maybe the Uloric is causing so many crstals to release that they are killing my kidneys. Do I take it to the grave?
Also I have had high uric acid numbers 12 plus all my life and not one person warned me off the risk to kidneys.
I am less then 30 gfr. I was normal in Aug.
Due to kidneys my blood pressure is now high after a life of normal.
ON A SIDE NOTE: does anyone have a rash on their chest from Uloric?
Thanks again to everyone who cares.
AngOctober 29, 2009 at 12:30 pm #6294
I can understand both doctors point of view, but they really do need to get together and find an answer.
To me, uric acid below 6 is a must. It is extremely serious not to accept this, and the decision to allow it to go higher can only be justified by a clear higher risk of something even more dangerous.
It is understandable to stop Uloric if it seems to be causing a problem, but it should be replaced by something else.
Clearly no simple answers, but a very simple question for your doctors. What uric acid lowering treatment, or combination, will lower uric acid below 6mg/dL without unacceptable side-effects?October 30, 2009 at 7:54 pm #6330
2nd, I’ve been taking 40mg of Uloric for a little over a week now and so far nothing adverse to report. I will be going to the lab in two weeks so I’ll have an SUA reading before my mext visit to the specialist.October 31, 2009 at 7:03 am #6334
Your situation is DIRE and I'd seek a couple more doctors to do battle for you. Perhaps the BEST nephrologist in your state. As you know, you are no longer in Stage 3 kidney disease ( >30GFR) but stage 4…and stage 5 is dialysis or transplant. When you say you were “normal” in August, do you mean as in the sense of a GFR around 100? Or just normal for stage 3?
Since ancient times gout has primarily killed by the destruction of the kidneys and it pertained until the invention of the antiuric acid drugs a half century ago. (Maybe soon it will be found that heart failue is the end-point of gout, who knows.)
Did you go many years with untreated UA's like that 12. If so gout caused kidney disease goes into the lead as likely causes of your bad kidneys. IF that happened to me I would be talking to a good malpractice lawyer about suing any GP whao saw that 12 and did nothing about it.
This is so complicated that you need the best opinions in the field with the very best data that can be found. One of the reasons that I remain skeptical is that Uloric is BRAND NEW and nobody can say what the long term effects are on the kidneys or on anything else except the bottom line of the manufacturer. If it were me, in the absences of consensus of the MAYO and CLeveland Clinic specialist, I would go with urate lowering to help your kidneys. BUT if a rapid worsening occurred only since you began Uloic, I would strike that agent from my list.
A rash is usually nothing, but a rash that develops soon or immediately after starting a new drug points to a hypersensitivity reaction and usually means STOP THE DRUG. Worse is the co-development of angioedema which manifests as swollen lips, eyelids, tongue and sometimes difficult breathing. Itching and rashes can sometimes be caused by the low functioning kidney also…wastes build up.
When you see your nephrologist, discuss getting on a list for kidney donation…sometimes the wait is long and the earlier you get on it the better. ANd we'll all hope you'll never need to use your place in line.
AFTER RE-READING THESE 2 DOZEN POSTS, WHAT I WOULD DO FOR MYSELF IN YOUR SITUATION IS TO CHANGE TO ALLOPURINOL
…there is just too much risk that Uloric is NOT the drug for you. WHat you DO know for unassailable facts are that you ARE taking Uloric and you are doing very poorly.October 31, 2009 at 10:02 am #6336
Thank you SO very much for the reply. I just cannot believe my Uric acid was over 10 sometimes 12 since I was 18 and my Rhoumy. of over a dozen years NEVER said anything about kidneys, every. The guy is so likeable that I guess he gets away with it. I want to confront him but he'll talk his way out of it. He always worried about my UA number but only in a gout flare kind of way. If I would only have had more warning. And yes my GFR was normal 3 or 4 months ago. I feel I am sitting by and watching myself die.
Thanks again to everyone who took time on this wonderful forum to write me. I have more blood work and tests this month and we will see what the Doctors say.November 1, 2009 at 1:53 am #6340
The guy is so likeable that I guess he gets away with it.
That is how conmen workJanuary 29, 2013 at 5:16 pm #14096KeithTaylorParticipant
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