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Old Sat Dec 29, 2018, 10:06 AM
Odedara_pankaj Odedara_pankaj is offline
Join Date: Nov 2018
Location: Perth, Western Australia, Australia
Posts: 2
Quality of life with Eculizumab

Hi everyone, I am 32 male from Perth, Australia.
I am on eculizumab or Soliris for past more than 2 years now. I am diagnosed with AA with Iron deficiency and PNH in 2016. I started my treatment in Octomber 2016. when my GP first found out that i have PNH my reports were already shocking. PNH clone size was already at 90% by the time i was diagnosed.

Looking back at my childhood I guess I am anemic from very young age as far as may be when I was kid.

Everything is going well with treatment apart from low energy levels and fatigue.
I always feel very lethargic, legs aching constantly, headaches pretty much 6 out of 7 days, really tired, joints aching, muscles aching, feel like i have energy of 70 YO man.
There are days when i am on holidays and doing nothing whole day but still i feel same at the end of the day.
My Soliris dose is 900ML every fortnight.

I would like to know if it is common to feel like that when one is on Eculizumab?
I informed my doctors several time about how i feel and they keep saying that you rather wanna live than stopping the treatment.
I am going thru emotional depression and anxiety at the same time which i am getting treated as well.
I have been given Antibiotics Penicillin.
I work as a chef and I also have cleaning business on side.

I would like to know how you suppose to feel when on treatment?
how many years can one live being on treatment? yes they say normal life expected.
does everyone else feel the same about quality of life?

I have uploaded some of my results for you guys if it helps.
Attached Images
File Type: pdf Scan 31 Dec 2018 (6).pdf (318.1 KB, 1 views)
File Type: pdf Scan 31 Dec 2018 (5).pdf (916.3 KB, 3 views)
File Type: pdf Scan 31 Dec 2018 (7).pdf (169.8 KB, 3 views)
File Type: pdf Scan 31 Dec 2018 (10).pdf (243.8 KB, 2 views)
Pankajji B Odedara

Last edited by Odedara_pankaj : Mon Dec 31, 2018 at 07:26 PM. Reason: Uploading my reports
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