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2.8 Overall Rating

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Most voted positive review

2 People found this comment helpful

I've been on Soliris/Eculizumab for 8 years with almost zero side effects. I know I am on the lucky end of the spectrum, but what can you say about a drug that removes your 50-50 chance of a blood clot and returns your life expectancy to normal? Pretty much a miracle for people with my disease. I will note, however that from other patients I know the drug is not as effective as it is for me. I...

Most voted negative review

1 People found this comment helpful

I have just been diagnosed with this condition, my physician has start me on steroids, pill form---prednizone. I would really like a different form of meds because of the harseness of this drug, concerning what the drug does to me. I have not as yet been given any other drug at this time, however very interested with the correct information, suggest these options to my doctor.

Shared reviews and ratings

andrev5 | 35-44 | Male | On medication for 5 to less than 10 years | Patient
2/10/2017
Condition: Dark Urine in the Morning Caused by Blood Disorder
Overall rating 4.3
Effectiveness
Ease of Use
Satisfaction

I've been on Soliris/Eculizumab for 8 years with almost zero side effects. I know I am on the lucky end of the spectrum, but what can you say about a drug that removes your 50-50 chance of a blood clot and returns your life expectancy to normal? Pretty much a miracle for people with my disease. I will note, however that from other patients I know the drug is not as effective as it is for me. I have heard that some of them remain on blood transfusions; I believe this is for people who have extravascular hemolysis (within the organs, where the drug can't travel). That doesn't seem to be the case for me. From my estimation of other patients I've met at conferences, I would say this drug gave at least some level of improvement to about 80% of people, with maybe only 5% having great results like me. Having to go to the hospital every 2 weeks is something of a drag, but you get used to it. Read More Read Less

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jam | 45-54 | Male | On medication for 2 to less than 5 years | Patient
11/20/2010
Condition: Dark Urine in the Morning Caused by Blood Disorder
Overall rating 3.0
Effectiveness
Ease of Use
Satisfaction

Don't like having to go every 14 days for the rest of my life.

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n/a | 55-64 | Female | On medication for less than 1 month | Patient
3/25/2009
Condition: Dark Urine in the Morning Caused by Blood Disorder
Overall rating 1.0
Effectiveness
Ease of Use
Satisfaction

I have just been diagnosed with this condition, my physician has start me on steroids, pill form---prednizone. I would really like a different form of meds because of the harseness of this drug, concerning what the drug does to me. I have not as yet been given any other drug at this time, however very interested with the correct information, suggest these options to my doctor.

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