November 16, 2016 at 5:07 am #5086Tophus SuffererGuest
I have hard tophus on my hands, elbow, and feet. I went to an orthopedic surgeon, and he said my tophus was so hard that it can’t be removed without severely damaging the skin. He said the tophus is so embedded in the skin that trying to scrape it off would damage the skin so bad that the skin would not heal because the blood vessels would be destroyed.
I’ve had gout for 37 years. It’s the worse case ever.
Is there a way to liquefy the hard tophus so it can be removed without killing the skin?
November 16, 2016 at 5:07 am #2259MetalmanvnGuest
Tophi on allopurinol
Suffered from gout for over 40 years. Now 72.
I still get large tophi and skin breakages which result in tophi oozing out like toothpaste. Just had huge tophi on back of hand surgically removed.
Take allopurinol 300mg daily. Don’t drink alcohol and low intake of red meat.
Any suggestions on different medication to control tophi.
Very rarely suffer gout attack nowadays.
April 15, 2017 at 3:52 am #3205Julie DonnellGuest
Tophi as first symptom of gout
I have lumps on my finger that are suspected gouty tophi. I will have an ultrasound scan to confirm this shortly and I am expecting confirmation. In the last few days, a small opening developed on my finger and I was able to squeeze out very small amounts of chalky fluid.
Once the diagnosis is confirmed then my doctor will prescribe allopurinol. I understand it is quite unusual for tophi to be the first symptom of gout as it usually forms after someone has been experiencing gout for some years.
A blood test showed my uric acid to be within the normal range. I have now read a fair amount of information about gout and tophi but I do not seem to be a ‘normal’ patient as tophi is my first symptom.
Do you have any advice I should follow at this stage in order to manage the gout that will become a part of my life?
I will form a plan but I think the first step will be to get onto the medication?
Thank you for any advice.
April 15, 2017 at 4:00 am #3206Keith TaylorParticipant
Gout pain is actually a complicated process, Julie. Because of that, some people do not get the painful immune system response that average people get. So, in some ways that’s a blessing. But, it also means you get a huge uric acid crystal burden before you get to treating your high uric acid.
However, it seems like you have a good idea to start allopurinol. So, let’s hope that idea becomes a good plan. If you need help with planning your allopurinol therapy safely, just ask.
August 14, 2017 at 1:26 am #5154
I am not a doctor nor a specialist, and only speak from my own personal research conducted on myself.. I believe that you can liquefy uric tophi with malic acid, but then that liquefied substance must be carried out of the body. There in lies the problem witch needs further research. I was also diagnosed by an orthopedic surgeon with the same condition in one of my finger joints. I opted to have no surgery done, and since then, (with daily malic acid supplementation), I have had NO gout flare ups at all.. Just the Facts. Hope this helps…
August 14, 2017 at 5:52 pm #5163
If you have good insurance, go see a rheumatologist and ask him to put you on Kyrstexxa. I did and it dissolved all my tophi in about 6 months. It involves a bi-weekly infusion of Krystexxa under controlled conditions. It is painless and time consuming but gets the job done. Without insurance, it is likely not affordable. My cost before insurance was about $32,000 every 2 weeks or about $400,000 for the full treatment. The other alternative is a heave does of allopurinol daily for 3-4 years.
August 14, 2017 at 6:44 pm #5164
Typo. I meant “a heavy dose” of allopurinol. By the way, my gout pain increased in intensity and frequency during the early months of treatment but subsided afterwards.
Horizon Pharma, the drug manufacturer, offers up to $15,000 per year reimbursement to you for insurance co-pays and out-of-pocket amounts and also offers a patient assistance program for those lacking insurance. Check it out at krystexxaconnect.com
August 15, 2017 at 12:20 am #5172
Hmmm, Kyrstexxa at about $5000 U.S. dollars a month. Malic acid caps at about $20 a month. Gosh darn, do I smell Big-Pharma here ??? I know that the research isn’t in yet on Malic-A, or is it, but why would you not try one before the other? Knowledge is Power. Stay gout free….
August 15, 2017 at 5:28 am #5175
Malic acid clearly doesn’t do what pegloticase does. You should know since you’ve tried.
Stopping flareups isn’t the point. Indeed, effective treatment may initially cause flareups and flareups often subside for a while without any treatment.
If I thought Tophus Sufferer would read this thread, I’d have brought up pegloticase myself.
By the way, rather than allopurinol alone, an alternative to pegloticase (which isn’t always successful and isn’t available everywhere) might be high-dose allopurinol (or febuxostat) combined with an uricosuric. Obviously such a drug cocktail isn’t advisable in every case.
August 15, 2017 at 12:30 pm #5179
Krystexxa is not $5,000/mo USD. It was about $65,000/mo. The total cost of my 6 month infusion treatment was almost $400,000!!!! Yes, my insurance covered it.
August 15, 2017 at 2:30 pm #5185d qParticipant
If I thought Tophus Sufferer would read this thread, I’d have brought up pegloticase myself. haha!
So you’ve had gout for 37 years, just out of curiosity, why didn’t you start allopurinol (I know febuxostat wasn’t around) back then?
Did Allopurinol not work for you?
August 16, 2017 at 1:20 am #5202
“Malic acid clearly doesn’t do what pegloticase does. You should know since you’ve tried”. “Excuse me”, I don’t believe that I ever mentioned any comparisons to either or… All that I have stated is that with daily oral malic acid supplementation. I have had no gout attacks at all since my last foot attack, March, 2017. My only conclusion is that I believe through the mechanism of dissolving uric acid before it can crystalize, It no longer posses a threat to the joints. I am not a chemist and I can not explain how malic-A does this or how Krystexxa, (pegloticase) does it either. I am just a long time gout sufferer who wishes to become Gout-Free…
August 17, 2017 at 2:18 am #5229
Am I reading this correctly?, “Krystexxa is not $5,000/mo USD. It was about $65,000/mo. The total cost of my 6 month infusion treatment was almost $400,000”?? Wow! So that’s only about $800,000,?? (Eight hundred thousand) U.S. dollars a year to treat the worst case scenario of chronic gout. How can the cost of that therapy possibly be justified, ?? I ‘me all ears. Go ahead….
August 17, 2017 at 2:34 am #5230
I forgot to add this interesting link. https://en.wikipedia.org/wiki/Savient_pharmaceuticals
August 17, 2017 at 8:55 am #5238
I’m not sure what question you mean to ask… perhaps you looking for information about health care regulations, prosecution of white collar crimes, patents or capitalism?
The practical matter at hand here is more straightforward: if someone’s health costs are covered by some form of insurance or government program, of course they’re going to want to make use of whatever therapies are available. Would you want them to refuse therapy for the sake of whatever superior good you have in mind?
Another practical matter is that the class of drugs in question is uniquely effective for people suffering from large tophi. And it happens that Krystexxa is to my knowledge the only drug of that class to be approved for use in cases of gout. Now there are doctors willing and able to use different drugs. But Krystexxa is probably your best chance if you live where it is available.
August 17, 2017 at 12:22 pm #5241
Thanks Nobody. Well said.
The cost was about $400,000 USD. $65k/mo x 6 months = $390k. Plus, I had to see my doctor and have my UA checked before each visit, which is not included in the cost above, nor are the prescriptions for Allegra and Colcrys which are required during treatment nor are the X-rays, ultrasound, lab work, etc. and follow-up doctor visits with labwork every 4 months.
Not as a form of justification in any sense, but this is the first major medical expense that I have had. I have been paying H&H premiums for over 40 years. The drug manufacturer offers assistance with the cost for uninsured persons and offers $15k co-pay and deductible reimbursement for those with insurance.
Yes, it is outrageously expensive! I was simply trying to let others know that such treatment is available if one has disfiguring tophi and pain and cannot find relief any other way. The tophi were causing bone erosion and had to be dissolved to stop further bone damage.
August 18, 2017 at 2:48 am #5276
I apologize, I certainly didn’t mean to offend anyone in any way. I suppose that I should have stated it more clearly. “How can the consumer cost of that therapy possibly be justified by the pharmaceutical company that markets it”. R&D etc. I also did suggest that malic acid supplementation therapy may possibly be “any other way” to successfully treat bone and joint damaging gout tophi. Simply another option to weigh for those suffering with gout. Let me also add that I am a long time gout sufferer, 10yrs, but I so far have not used any prescription drugs for treatment. I do have substantial damage to some finger and toe joints and have had many crippling attacks. Supplements are all that I have used thus far and malic acid has been instrumental in keeping my gout at bay. Just the facts…
August 18, 2017 at 3:51 am #5279
It’s not clear to me what sort of justification you’re looking for but the pharma company didn’t make the rules of this game.
Approved drugs which very few people use need to be very expensive if their development is to become profitable. The fewer patients, the more revenue is needed from each patient in order to recoup costs.
Again, malic acid clearly doesn’t do what pegloticase does. It is not an alternative.
Pegloticase treatment typically causes SUA to fall to a very low level. You took malic acid and your SUA increased from 6.9 to 7.6 which is consistent with a placebo and isn’t consistent with an intervention that does much to liquefy large tophi.
It is at this stage not a fact that malic acid has been instrumental in anything during your trial, just speculation.
August 19, 2017 at 12:29 am #5305
The debate here is over. Stay healthy and may your tophi lose there grip forever.
I will however periodically check back with any relevant info pertinent to my placebo therapy.
August 29, 2017 at 8:17 am #5479Keith TaylorParticipant
I suppose it’s inevitable that costs get mentioned when Krystexxa is discussed. But, as a life-saving treatment for unresponsive gout, it’s more of a moral issue than a gout issue. Personally, I think the best place to discuss medical costs is outside this gout forum. Because it’s political, not medical.
Anyway, when I posted this message from the Feedback form, I hoped to introduce the topic of Krystexxa. So, it’s fantastic to see John’s update. I understand what nobody means when he says “If I thought Tophus Sufferer would read this thread, I’d have brought up pegloticase myself.” Because it seems futile to respond to questions that are unlikely to get reactions from the original poster. But, I tend to think of the thousands of visitors who don’t feel comfortable posting to forums. Because they will get good knowledge from seeing the real-life benefits of extreme tophi control.
So, thanks to all who contributed here. I think I have some more relevant Krystexxa information somewhere. So, I hope to dig it out soon.
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