August 30, 2016 at 10:20 pm #1755
I just completed a 6-month Krystexxa infusions round. I had 2 large tophi on my middle toes. Now they are almost totally gone. The MD said all the crystals are gone and what’s left is scar tissue. During treatment, my UA level went from over 5 to 0. I’m now on 300mg allopurinol.
Here’s the lowdown. Infusion cost was $68,872 per month for 2 infusions. Fortunately, my insurance covered the cost. The drug manufacturer offers a $15,000/year reimbursement for out of pocket and co-pays, not including the doctor co-pays. I had to see him before each treatment and have my UA level tested, then he would authorize the infusion. Infusion consisted of 30 min. saline drip, 2-hour Krystexxa drip, then another 30-minute saline drip. I had to take 60mg Allegra the night before and morning of infusion else they would not do it. Right before the infusion, I received 1,000 mg Tylenol, a Benadryl, and a full syringe of steroid (Medrol?) was added to the saline drip. I typically slept thru most of each infusion. I also had to take colchicine daily during the treatment and learn to tolerate its undesirable digestive side effects. Colchicine has increased from $5 for 30 pills to over $500 for 30 pills which should be illegal!
My gout pain increased significantly and more frequently during treatment. At times it was extremely painful. It always seemed to happen a couple of days before the next Krystexxa treatment. I’ve had no pain since completing treatment.
August 30, 2016 at 11:05 pm #1756
Wow John that’s a huge amount of money! I am so pleased that you are now pain-free but ‘Wow that’s a huge amount of money!’.
I live in Ontario and we have a kind of National Health here – note every province is different in that regard – and we also have semi-private coverage through my husband’s job but I very much doubt either would ever cover those kinds of costs. Even with additional health cover it is actually illegal here to go for any kind of private treatment inside the country, some cover will be provided it we go over the border to the US but it is complicated.
August 30, 2016 at 11:55 pm #1757
John, wow. Can I ask you a question? I’m not familiar with Krystexxa treatment, but it is anything similiar to Ultraviolet Blood Therapy? This was/is something I’ve been looking into but have been hesitant to get to far into. Thanks.
August 31, 2016 at 12:04 am #1758
Disregard that last question John. I was able to find the answer myself. I was away from my tablet and my phone wouldn’t link up when I tried to Google search Krystexxa. Boy, doctors are pretty divided when it comes to this drug therapy. Aside from cost, the health effects, and potential side effects seem to be a real gamble. Glad it is working for you, but I think I’m going to stick with Allopurinol and a healthy lifestyle for now. Until I can read more about these other potential cures, but thanks for the heads up
August 31, 2016 at 12:17 am #1759
I will google it Patrick. I am not keen to try drugs at the best of times, have had some nasty allergic reactions but now that I am past the first weeks of reaction to Allopurinol I too will keep going. I am on 300mgs a day right now, next blood work in about 6 weeks.
BUT I to want to add my thanks to John for sharing his experience. It seems increasingly obvious to me that we must all do our own research. And share, share, share on sites like this. What a strange condition this Gout thing is. So many different experiences and symptoms – with the common denominator – it hurts like H***!
Much though I love my GP, he’s a sweet and caring man, clearly GP’s are basically a kind of clearing house – either it’s ‘Take two aspirin and call me next week if you don’t feel better’ OR ‘Well, you’ve got the Dreaded Lurgy and you’re stuffed, I can’t do anything for you but I’ll try to make an appointment for you to see a specialist who will tell you the same thing.’ It’s a Goon Show reference which will mean nothing to people below a certain age and also people from outside the UK. If you are completely laid up because of the Gout then YouTube ‘The Goon Show’ I promise it will make you laugh and possibly forget the pain for at least 30 seconds.
August 31, 2016 at 2:52 am #1760
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?
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.
August 31, 2016 at 1:27 pm #1761
I don’t seem to have much of a problem with tophi. I do have a couple of funny looking lumps on two toes on one foot but I think they are shrinking. I am also not sure it is available here. The waiting list to see the Internal Medicine person is pretty bad so I probably won’t get in for at least another couple of months. Meanwhile I’ll keep taking the tablets! 🙂
September 2, 2016 at 2:02 pm #1767
Thank you, John!
I’ve been following the progress of Krystexxa since it was first developed as PEG-Uricase, and later pegloticase. I think you are only the second or third case I’ve heard of.
For those that need it, it is often the only way to get gout free. Like many drugs, it isn’t tolerated by everyone. And of course, people have to make their own decisions regarding the safety of medicines versus dangers of gout.
I think all gout sufferers can learn something from Krystexxa:
- It shows that very low, even zero, uric acid is safe.
- It shows that very low uric acid will shrink tophi.
I believe those facts support the view that uric acid lowering, for the first 6 months to 1 year, should aim as low as possible. Other commentators agree with this. I even remember a suggestion that uric acid lowering treatment might become an annual event for a few weeks to get uric acid as low as possible. Unfortunately, I can’t remember the reference.
One thing puzzles me – colchicine prices. I thought that the exclusive Colcrys license had expired, and generic colchicine available at reasonable prices. I reported that Prasco Labs had been authorized to produce generic colchicine in January 2015. Has anyone seen any change in this at the pharmacy counter?
September 2, 2016 at 3:38 pm #1770
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.
September 3, 2016 at 7:17 am #1775
I can’t find anything commercial from Prasco Labs. However, West-Ward have released Mitigare as a branded and generic colchicine. There are coupons at mitigare.com.
Best prices I have found is $76.01 at walgreens.com. That’s for 30 0.6mg doses. Best price for a similar pack of Mitigare at walmart.com is $104.52. However, I suspect the walgreens.com price is with coupon and the walmart.com price isn’t.
Sorry that’s a bit vague, but I can’t full check USA prescription prices from the UK.
It seems to me that doctors and insurance companies got used to the Colcrys fiasco, and just raised prices for their customers. It’s probably time to wake them up, and tell them we’ve moved on. 😡
Finally, I’ve found the reference about intermittent uric acid lowering treatment. I got it wrong when I suggested annual treatment. Perez-Ruiz believes that, if uric acid lowering is managed correctly, then allopurinol treatment every 5 years could become standard practice. Of course, this is not directly related to Krystexxa. But it underlines that pegloticase treatment might not need to be repeated very often.
September 3, 2016 at 12:21 pm #1780
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.
September 3, 2016 at 1:19 pm #1781
Thanks for the heads up on no-repeat for Krystexxa treatment. It makes sense, as we humans produce antibodies against the treatment.
I strongly suspect the pain you are experiencing is due to old crystals dissolving. Even with the fast dissolving at very low uric acid levels, there is a point in time where crystals are just starting to dissolve. At that point, our immune system springs into action. There’s evidence to suggest that prior gout attacks make us more sensitive to the gout pain process. If a large number of old crystals become exposed to our immune system, then gout flares are expected. It’s impossible to predict this, because we never know where old crystals are lurking. I know your doctor said all old crystals have gone. I suspect this might not be entirely true. Some old crystals might be partially shielded by old scar tissue. But, huge changes are taking place within the structure of your tophi. I believe there is a strong chance that some crystals are still being activated as your body recovers. Without an appropriate CAT scan (actually DECT), we might never know. I’m very hopeful that these will stop.
You’re in a rare situation John. As you’ve explained, very few people have completed Krystexxa treatment. Therefore, reports about patient’s recovery are almost unknown. Logically, all pain should resolve soon. Do you have anti-inflammatories to help, or do these also cause digestion problems?
September 3, 2016 at 3:05 pm #1783
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.
January 11, 2017 at 1:26 pm #2385
I have been having Gout issues for the last few years. I have been on all the medications so far but none help. Even on medication my Uric Acid levels still increase. My last level was 13.1 I try to be very careful with what I eat but thats not always possible since I work in public safety, The next option the doctor and I are looking at is the Krystexxa. Is there anyone else like me that the medications dont seem to work on?
January 12, 2017 at 7:11 pm #2387
There are enough people around who suffer gout like this for it to have it’s own names – recalcitrant gout, intransigent gout, or refractory gout. As far as I know, they all mean the same thing. Ie, gout that cannot be treated by common uric acid lowering therapies.
But, my first question is, what have you tried so far? My second question is, what were your uric acid excretion test results?
Krystexxa is very effective. But it’s far from perfect.
I’d need a lot more detail to say if Krystexxa is the best choice at this stage. Excess uric acid is dangerous. But, only a very detailed analysis can determine if the risks of Krystexxa outweigh the risks of untreated excess uric acid.
Maybe you could add a bit more information, Greg?
February 2, 2017 at 11:32 pm #2567
First time post here and I hope this note finds all my Gout suffers well.
I’m a 39 year old (Irish American) male in decent shape that apparently has an enormous amount of Gout Tophi in my system. I haven’t been put on any real Gout meds but have definitely suffered alot in the past 2 years dealing with this condition. My dr suggested that I should go on Krystexxa which is an lengthily infusion process where they inject you with an aminal protein that will seek out and digest all the uric acid/tophi throughout your system. Has anyone tried this or could you offer any advise if this experimental treatment is worth the effort? Many thanks
February 3, 2017 at 4:52 am #2568
If I’m not mistaken, we had a poster here a few months back talking about this very topic. It might be in the archives of topics. I’m not familiar with it, but after reading it, I Google searched it and found it very interest…..but very expensive. Try searching the topic archives to see if the thread is still there.
I also think Keith knows about it and can probably speak a little to it, if I recall correctly
February 3, 2017 at 9:11 am #2574
I’ve followed Krystexxa from its early development as PEG-uricase. Medically, it’s now called pegloticase, and Krystexxa is a brand name for it. You can search for Krystexxa, pegloticase, or PEG-uricase in the search box at the top of every GoutPal page. There’s some fascinating information including a picture showing how pegloticase clears gouty tophi in weeks. Krystexxa has been extensively trialed. So, it’s better to call it “cutting edge” rather than experimental.
I’ve merged this topic with the Krystexxa discussion that Patrick refers.
Most animals don’t have uric acid in their blood. Because, they produce an enzyme, called uricase, that breaks down uric acid soon after it is produced. Early attempts to treat gout patients with uricase failed, as our bodies rejected the foreign enzyme. Scientists took uricase from pigs, and genetically engineered it to try and avoid the human rejection problem. They now grow the culture as a fungus, to provide pegloticase. Rejection problems have not yet been totally overcome. So, some patients cannot tolerate the treatment. And, for all patients, it’s a one-off treatment. That’s because our immune system produces antibodies during the course of treatment. Eventually, these antibodies make the treatment ineffective. But, once all your uric acid burden has been dissolved, it will be several years before crystals grow again. Often, this can be controlled with tolerable doses of other uric acid lowering drugs.
Krystexxa is a lifesaver for patients who cannot tolerate other forms of uric acid lowering treatment. But, it’s usually a last resort, where allopurinol or febuxostat (Uloric) have failed. Perhaps your doctor sees some immediate dangers from your tophi, Kevin. Dissolving them quickly might be vital to your health. I don’t know enough about your medical history to understand the urgency. An alternative is maximum dose allopurinol.
February 5, 2017 at 5:42 pm #2581
Thanks Patrick and Keith for you replies as I’m still on the fence in pursuing the Krystexxa treatment. So far, I don’t the reason on why I haven’t been put on allopurinol, however, this may be related to the amount of non-visible Tophi I currently have in my system. At the end of the day, I don’t know if I can commit to the Krystexxa at this stage in my life and may decide to put this option on the side as a last resort. Thanks again and I’m glad that I found this Gout blog 🙂
February 7, 2017 at 9:26 am #2587
I’m also glad you found it 🙂
Whatever you do, it makes sense to start uric acid lowering treatment as soon as you can. That will start the tophi-shrinking process.
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