[John Temple]

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.

[John Temple]

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.

[John Temple]

Bob,

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.

[John Temple]

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

[John Temple]

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.

[John Temple]

Keith,
Your responses and insight are excellent and help me to better understand the world of gout and its treatment. What you described makes sense. Thanks for all the info.

My rheumatologist used an ultrasound to determine that the crystals in the Tophi areas were dissolved. That’s a far cry from the accuracy of a CAT scan.

I generally take the NSAID Naproxen (Aleve) for flare ups and it provides reasonable relief without any noticeable side effects.

John

[John Temple]

Thanks Keith. You may have just saved me some money.

My doctor told me that I Could never repeat the Krystexxa treatments. It’s once and never again. And, the treatments would over if I missed an infusion, dropped out or developed a rash. Rash, he said, was the biggest side effect which is why one must take both Allegra and Benadryl. The infusion center told me that others left the program because one wouldn’t follow the treatment protocol, one said it wasn’t working and dropped out and another developed a rash. It was several months before I saw any change in the Tophi. My only side effect was severe gout pain in one big toe every couple of weeks. The pain always occurred a few days before the next infusion.

The Tophi are pretty much gone. I don’t know why I am having some gout pain in my big toe right now if my UA levels are so low. It’s not bad, but it’s there and affects walking. It has to be bad, tho, before I will take a colchicine.

[John Temple]

I believe they are filling mine as Colchrys. It comes in a white, screw-top bottle, not a brown see-thru like other meds. Maybe that’s why it’s costing so much. My co-pay is $100/month or $200/90 day supply. My doctor had said that there wasn’t a generic available. I saw the article saying a generic was to be available last year. I’m going to dig further.

I’m glad not to be taking it every day, and sometimes 2x/day, as I had to do with the Krystexxa infusions. My stomach is finally getting back to normal. I had many, very painful gout flare ups during infusion. Previously, I only had 3-4 a year.

[John Temple]

Patrick,
I wasn’t able to find much about Krystexxa (pegliricase) before I started the infusion therapy. What are the possible side effects that you uncovered?

Carolyn,
I asked my PCP/Internal Medicene MD about the Tophi numerous times and he never knew what they were but did treat my gout flare ups. I went to a foot surgeon and to a podiatrist who both said it was from gout and both strongly advised against surgery. I finally visited a rheumatologist who was the first MD who was able to explain the cause and the possible treatments. No surgery, he said. My choices were 3 years on allopurinol or 6 months on Krystexxa. Once they got the treatment approved by BlueCross, I went with the infusion. The Tophi had caused some bone erosion which would worsen, he said.

Each infusion contains only a tiny 8mg of pegloticase in a bag of fluid.

Talk to a rheumatologist.

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