Generic Name: Pegloticase for Gout (pegloticase)
Krystexxa (pegloticase) "I have been on Krystexxa since Sept. 2023 for gout (uric acid levels high for years) and have had 11 infusions every two weeks since then. I was unable to take oral medications because they affected my kidney function. Tophi were removed from my 2nd toe and I lost a little bit of bone. Krystexxa was definitely the treatment for me. After the first couple of infusions, I had flare-ups, but after that, I felt much better! My uric acid level has been at ZERO during every blood test after my first infusion. This has been a lifesaver for me!"
Krystexxa (pegloticase) "Started this therapy just a week ago. Being 7 years on allopurinol, I have never seen my uric acid level under 9. Within 4 hours after my 1st infusion, my uric acid went from 13.1 to 1.9. Looking forward to seeing what it does to my hand tophi."
Krystexxa (pegloticase) "My husband has severe gout. Before starting Krystexxa, he was so bad that I had to take him to the doctor in a wheelchair. He couldn't stand, walk, or even function. Krystexxa has changed all that. He is back to walking on his own and functioning quite normally. Thank you!"
Krystexxa (pegloticase) "I had 64 infusions over 2.5 years and my gout seems to be long gone. Haven't had any gout attacks in years and I think the allopurinol finally works as it isn't fighting a body overloaded with tophi. There were lots of attacks in the early stages but after the 12th or so infusion, it was smooth sailing. Most memorable was the second infusion, which was done in the comfort of my favorite chair in my house, was when I noticed halfway through the drip that all of my tophi lumps had turned to a jelly consistency. I was expecting such dramatic and speedy results. My doctor kept me on it for at least a year after all tophi was gone as he said I probably had tophi attached to my organs as well as my joints. This stuff really works and you can have it administered in your own home if you just ask. 10/10 stars. Making my retirement a lot better."
Krystexxa (pegloticase) "Miracle drug. My son (age 35) has had gout since he was 16. He had gotten so bad that he literally could not get out of the house without crawling. His quality of life was limited and I was beginning to worry about his mental state. After 12 treatments, not only was he walking but he was able to dance with his daughter at my wedding. We're hoping for a maintenance program now. Thank You!"
Krystexxa (pegloticase) "I was on this drug for five months... then my body built up antibodies to the med's. I had my infusion treatment on February 23 then I ended up in the hospital on February 26 with a severe allergic reaction to all gout medicine. I was in ICU for three days almost died. I will never ever recommend this drug or any other gout medicine to anyone. I'm also at stage 3 kidney failure getting ready to go to stage four. Be very careful with this medicine. I am just thankful I'm still alive..."
Krystexxa (pegloticase) "This infusion drug (Krystexxa) is working great at dissolving several large tophi lumps in only 6 treatments in 3 months. As the treatments progress, I've also noticed an increase in energy and just feel better and more alive overall. I've had gout for over 25 years and apparently didn't get on Allopurinol before it was too late. Even though the Allo kept my uric acid in the normal range, I had supposedly been allowing lots of tophi to grow on my internal organs. My doctor thinks I may need a year or more of Krystexxa to rid my body, internal and external of all of the tophi, then the Allo may actually work. So thankful somebody invented this drug as my gout had gotten very bad recently as I turned 60. I've been having large flare-ups of gout attacks in-between the infusions but they are lessening in severity recently. Hopefully the worst side-effects are over and things will get even better as I proceed."
Krystexxa (pegloticase) "I had undiagnosed gout for many years. Flare-ups became extremely painful about 4 years ago. I was diagnosed then with a UA level of 12. I was put on Allo, but within 1 month my liver enzymes were off the charts, though my UA was down to 8. Tried Febuxustat with the same result, increased liver enzymes. Flares increased to every 2-4 weeks. Colchicine helped. In addition, my CKD had progressed to 3++, Creatinine and GFR were getting worse. Approved to start Krystexxa in June 2023, started 1st treatment on July 5, 203, just finished infusion #9. My first 3 months were pretty bad, with severe flare-ups causing me to be unable to walk, lasting for several days, especially during the first 3-4 treatments. Finally, I have no flare-ups at all now. Plus, my CKD has improved dramatically. Creatinine is almost normal and GFR is normal. Liver enzymes are almost normal. If you're considering Krystexxa, just be prepared for the severe flare-ups and pain in the beginning as the drug 'dissolves' the Tophi and hits your system."
Krystexxa (pegloticase) "On Monday, May 1st, 2023, I will have my fourth infusion. I had undiagnosed gout for 15 years until I switched to a new primary care doctor. I previously believed I had some type of arthritis, but my new doctor ran a uric acid test and discovered that I was in stage 3 kidney failure. After three treatments, all of my labs are improving. During the Krystexxa treatment, I am not allowed to take Allopurinol, and I must take an anti-rejection drug prescribed by my kidney doctor. I am taking Mycophenolate twice a day, and I can take a low dose of Colchicine for flare-ups. So far, I am very happy with my results, especially because it is improving my kidney function and I can feel the changes in my body. The treatment has been proven to break up the uric acid crystals and move them out of my body. I am grateful for the referral that allowed me to start this treatment every two weeks. I would like to thank Horizon Therapeutics and my personal RN/REP from Horizon, who calls me after every treatment to get my feedback."
Krystexxa (pegloticase) "I’ve had gout for 21 years. All the traditional meds had side effects. I'm 60. It is week 5 and the gout flares in my hands continue unchecked. I've got about 30 percent ability in my right hand and my left hands turned into a swollen claw. Sleep comes only when I’m so exhausted I border on delirious. The flares in my arms are constant and at times take the whole arm. Something that’s never happened to me before. Colchine and indomethcin haven’t had any effect on the flares I can see. Don't let anyone kid you - expect the flares to be brutal."
Krystexxa (pegloticase) "Doctor's need to be real with their patients regarding gout flare ups. About to go in for my 2nd infusion tomorrow morning but I am experiencing a significant gout flare up in multipole joints - hands, wrists, ankles, feet. I'm a runner and I was doing fine until the first infusion - 500 mg allo, .6 mg colchicine - but I wanted to take the uric acid level lower and possibly begin dissolving tophi crystals. Now I'm in a bit of pain and feel like an old man - can't really be as mobile as I was prior to receiving first infusion - I sincerely hope this is not how it is for the remainder of the treatment - what's the point then? Hard time walking and getting around without pain and can't even think about heading out for my runs at this point. That being said my UA level is .89. Never has it ever been that low - I just have years of gout breaking up in my body and circulating, apparently."
Krystexxa (pegloticase) "My uric acid level 10.9 at 1st treatment. I have had gout for over 20 years in almost every joint you can think of fingers, toes, hands, wrist, elbows, shoulders knees, ankles and even my ear lobe. Hopefully this Krystexxa stuff will do the trick for me also I was taking 300mg allopurinol daily plus prednisone - yet no relief. Knots coming up all over my body and multiple surgery to remove some praying this works so I can live normal again! 1ST night of the infusion sore and have vomiting. So we will see how it goes from here."
Krystexxa (pegloticase) "I've been bed ridden for four and a half months now and am taking colchicine and allopurinol. Uric acid level still not subsiding. And I'm going crazy. I'm getting insurance so I can get on krystexxa. I can't walk without crutches and I need a wheel chair. Praying that krystexxa will work."
Krystexxa (pegloticase) "First, off I strongly recommend the infusion treatment if you have a chronic condition. It was my last resort. I struggled with gout for most of 30 years and was finally referred for infusion treatment a year ago. My case was so bad that I’m still on it 15 months later but I’m finally gout flare-up free. The first 3 months were pretty tough going with regular painful flare-ups. But stick to it, it’s worth it. I now have space between my toes, the bunions on both my big toes are gone, almost the other knots, etc. have disappeared, and I can wear boots and shoes all day again. I’ll complete my treatment program within the next month or so. My gout had absolutely nothing to do with my eating or drinking habits because I’m a very conservative consumer of alcohol and my diet is and has been a very healthy one."
"This is an update from starting this drug last year. I’ve gotten full use of my hands back, most of the tophi have dissolved. I just stopped taking the drug and occasional flares still happen.if you have lost mobility I’d urge you to try it. it’s worked miracles on me."
"After first treatment (wow expensive stuff) uric acid levels were almost non existent. After 5 uric acid levels went to 11.0. Did not work for me. Went to Uloric and dropped to under 5. My primary care physician did not like my blood work during this so I am on Allapurinol 300mg. I am awaiting my first uric acid levels. I have been on this for only 3 weeks. Fingers crossed"
"Been on Krystexxa for almost 3 months and it's been a positive experience. Serum uric acid undetectable ever since treatment begun. Some tophi are slowly getting smaller, including a very rare case of intratendinous tophi in my RT patellar tendon. Anxious to see how a full 6 month treatment plays out. I'm also on a low dose 15mg / wk of methotrexate pills to minimize the chance of developing antibodies to Krystexxa. So far, that appears to be working. I'd suggest anyone considering Krystexxa to ask their rheumatologist about doing the same because if you develop antibodies like several patients do, it's game over and you can't try it again. Also to those new to Krystexxa, it can and will induce some of the most wicked gout flares you've ever had. Mine began approx 2 wks after first infusion. I see this as positive proof that those crystals are mobilizing and going away. Flares become less frequent. When not experiencing a flare, my feet and knee feel better than they've felt in 15 yrs."
"I have had gout for 30 years and tried homeopathic and prescription (allopurinol) before Krystexxa (pegloticase). Nothing seemed to work except for Krystexxa. I did have a few flares when I first started the IV protocol, but they weren't as severe or lasting (treated with colchicine and indomethacin). Then only the occasional flare-up when I found out I had a reaction to shrimp chips or shrimp in a brine/sauce. I avoid shrimp chips or concentrated shrimp brine, I do have shrimp cocktail and have no reaction to that. Taking the IV protocol every two weeks is definitely a commitment but works. I slowly stretched out my IVs to 5 weeks, but noticed my uric acid level would rise. I am now back to two/three-week intervals, and I would definitely recommend Krystexxa if you have severe gout."
Krystexxa (pegloticase) "My uric acid is staying below normal. I feel better... I am doing a little more just within a month."
Krystexxa
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