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I'm new here. I'm desparate to help my husband!
He is 43 and has had gout attacks since his 20s. Started with one attack every couple of years, then yearly, then twice a year, monthly and now seems like every other week. His last labs showed his Uric Acid levels at 11.1 He was put on Colchicine daily. Then he was put on Alopurenol daily and was told to take the Colchicine when he has an attack (and stop the alopurenol) Meanwhile, he was also started on Lovastatin for Cholesterol. After just 2 doses of Lovastatin, he began to have severe muscle pain and weekness. He was pulled off the statin and was told to start another statin in a week. (don't remember the name because we never filled that prescription) A couple days later, his symptoms worsened. We went back to the clinic and he had a drop on BP right there and the Dr. called 911. Bob was taken to the ER and was diagnosed with rhabdomyolysis. This is a rare condition caused by either crushing injuries to the muscles or by meds. In this case, the Statin. (During this week he stopped taking the alopurenol) A week later, lab tests show his kidneys were not damaged and his numbers are coming down. BUT he gets a gout attack on Thursday morning. Starts in his right shoulder then right hip, then right knee and ankle. Took 2 colchicine and then one every hour for 3 hours. Did not have stomach upset until Friday afternoon. (Colchicine is taking longer to kick in) Still no relief from pain. Saturday morning his shoulder and hip were better, but still had pain in knee and ankle.
I spent hours online trying to find remedies to help with the pain and to lower his Uric Acid as fast as possible. I went to the grocery store and got cherries, Crancherry Juice, Berry Juice, bananas, and he's had no meat, at all. If I could only get him to eat the cherries I give him and drink all the fluids I give him
he slept just about all day from Thurs eve to Sat morning. I dont know what to do anymore or how to help him anymore. At times I feel like I'm strong and determined to beat this and other times I feel helpless and sad. I hate to see him in so much pain. I need someone to talk to about this.. don't know where else to turn. Seems like everything I'm doing is just not good enough. I know its hard for him too… he needs me to help him sit up, get up out of bed, walk him to the bathroom, help him off the toilet, help him in the shower and dry him off, help him get dressed. Oh and I have two little ones that have been stuck in the house trying to entertain themselves during their summer vacation. We are also supposed to be leaving for Laughlin and Las Vegas on Monday morning to celebrate our 10 yr wedding anniversary. I doubt we'll be able to go, and that's ok with me. He says we're going no matter what, but I just don't see any improvement.
So, if anyone out there actually read this entire post and might have some helpful ideas, please let me know.
thank you all for your help! everyone has been just wonderful.
now, how do I delete this post?
Mr. Admin, feel free to delete it.
BobsWife said:
thank you all for your help! everyone has been just wonderful.
now, how do I delete this post?
Mr. Admin, feel free to delete it.
?? I don’t understand – I can’t see any replies to this anywhere 😕
Anyway, this is amongst the worst examples of a total letdown by the medical profession. Please can others take it as a warning, that you really do need to take control of your own responsibility for gout.
The first important point is that after 20 years, Bob still has uric acid levels over 11 – a dangerously high level.
The second important point is that now Bob is eventually getting proper treatment – allopurinol – it is being totally mismanaged. Though gout patients should usually wait until a gout flare is over before starting on allopurinol, you should never stop it once started, unless it is causing some other problems like severe rash or liver problems. Allopurinol has to be taken every day to keep uric acid down. If you stop taking it, you are soon back where you started.
Related to this are 2 extremely important points:
- Allopurinol dose must be adjusted to make sure uric acid level stays below 6mg/dL. Anything less is a waste of time, effort and money.
- The first few months of allopurinol often cause gout flares. This is to be expected, and colchicine is the best thing to take at the first sign of a gout flare. Other gout pain relief treatments are available.
I was puzzled by the second post also!
Two things struck me on Bobs' experience-
One, I've recently taken Colc +Statins together and I felt that the Coch effect was enhanced rather than diminished- but anyway , similarly, stopped the Simvastatin after a few doses as it made me feel groggy and I had enough on already!
Secondly, with such high SUA I wonder if Soda BiCarb would help here? [1/2 tsp/ bi-daily in water]
I have 'hard to control' High BP -so can never consider the use of this common medicine cupboard drug remedy, though have been tempted greatly.
Hi B.P. is not an issue here and others have found it effective in lowering blood acid quickly.
I have used it however as a soak[up to 1/2 cup] ,along with Epsom Salts[up to 1/2 cup] in the bath- and understand, as well as detoxing, this combinatiion used equally, can balance out re-absorptions.
Large packs can be found if you shop.
With such a painful situation anything would help extensive gout like this case.
Just a few thoughts:
1. On and off allopurinol is NOT the right way to take it. Once started it must be continued, attacks or no atttacks, colchicine or not. A doctor who said take the colchicine and stop the allopurinol during an attack should be summarily FIRED, he's incompetent.
2. For a severe attack, 3 hours of colchicine is just not enough. THe regimen is 2 to start, then one pill an hour until the pain stops, the diarrhea gets severe or you reach a limit of 16 pills. It can be brutal on the intestines but the regimen WORKS!
How much allopurinol is he taking? It should be enough to lower his uric acid to below 6.0. Some people need 800 mg./day, some 200? If he's not getting a good response to allopurinol he should have his urine sampled for 24 hours. If he is a sever uric acid underexcreter, then his drug of choice should be probenecid. But whichever he takes, there should NEVER be a day when he isn't taking the med.
You said that he had a uric acid of 11.1 and THEN the allopurinol was started…what numbers does he get WITH allopurinol.
Rhabdomyolysis certainly means NO STATINS, a shame if his blood lipids are whacked…alas that means extreme dietary control, probably minimal meat and dairy. A nice thing about Lipitor is that it;s uricosuric uricosuric (but not all statins are.)
Gee, lovastatin is among the weakest statins…I'm surprised it caused rhabdo. Alas, though very RARE, allopurinol can also cause rhabdomyolysis…but then so can colchicine…OY!
Remember though, with the rhabdo and hyperuricemia his kidneys will not stand much more so proper uric acid control is mandatory. I think maybe your husband should be in a hospital for a little while under the care of a GOOD rheumatologist and GOOD nephrologist.
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