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Living with Illness Coping with disease, getting help, dealing with family, staying optimistic, quality of life, hospice care

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  #1  
Old Sat Dec 29, 2018, 11:06 AM
Odedara_pankaj Odedara_pankaj is offline
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Join Date: Nov 2018
Location: Perth, Western Australia, Australia
Posts: 4
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)
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Pankajji B Odedara

Last edited by Odedara_pankaj : Mon Dec 31, 2018 at 08:26 PM. Reason: Uploading my reports
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Old Sat Dec 29, 2018, 05:04 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 703
Hi,

Sorry that I can't comment on the Solaris.

Do you still have AA and iron deficiency? Are your counts still low or have they recovered while on Solaris? Have you been feeling this way the entire time that you have been on Solaris or is it a more recent development?
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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Old Sun Dec 30, 2018, 09:07 AM
Odedara_pankaj Odedara_pankaj is offline
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Location: Perth, Western Australia, Australia
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Hi,

My RBC are still under and iron is better cause i am on tabs.
I have headache since i am on treatment. I have been feeling legs aching and muscle pain from day one but yes for past couple months it is getting worst.
Before after treatment i use to feel better for at least week but now its just same everyday no improvement after treatment.
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Last edited by Odedara_pankaj : Tue Jan 1, 2019 at 05:00 AM.
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  #4  
Old Fri Jan 4, 2019, 08:51 AM
Simon Miller Simon Miller is offline
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Join Date: Aug 2018
Location: Ireland
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Hi Odedara. I have a somewhat similar situation to you, I have Aplastic Anemia and PNH but I've had the AA for around ten years and the PNH developed in the last three or four years. I've only been on Eculizumab for the past year.

I went without Eculizumab for a while, really until the last minute and I was pretty much at death's door from organ failure due to blood clots. So I'm absolutely amazed at the difference it has made to me.

Unfortunately, I think you just have to adjust your acceptable level of quality of life and try to make changes to accommodate for living with a chronic illness like this. It's natural to expect to just "go back to normal" or "be cured" at some point but I really doubt that it's common for that to happen. Regardless of how effective the treatment is in the immediate sense, there is more strain on all parts of your body in the long term when living with this, I'm in my late thirties now and feel like I'm beginning to age quite quickly (although I imagine a lot of people in their late thirties feel like that!).

It's probably trivial advice to give but nonetheless I would say try to slow your life down and do things at the pace with which your body feels comfortable. It sounds like you have a lot of pressure in terms of your jobs, it could be worth considering a career change. I did that myself, I went from physically demanding work to working with computers and it made a huge difference. But I'm well aware that it can be difficult to do this in a practical sense, the bills don''t stop coming through the door.

I think it helps to be thankful for the fact that we're still getting a chance at life, particularly with Eculizumab which is a pretty recent and game-changing treatment. Although I know that it varies from patient-to-patient in effectiveness.

I'm not sure what the conclusion to this post is, but you should know that you're not alone in suffering through this, although it's not a common illness. People do like to say things like "don't let an illness dictate your life" but I honestly don't think that's helpful. I think if you can fit your life around it as best as you can then your quality of life will improve.

Always look on the bright side of life, as they say
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Old Fri Jan 4, 2019, 10:14 AM
Odedara_pankaj Odedara_pankaj is offline
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Join Date: Nov 2018
Location: Perth, Western Australia, Australia
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Hi Everyone
Thank you for your response and sharing your experience with me.

Yes I do agree with you that always see bright side. I am always thankful that at least I am physically able to do everything I want and I am lucky that I am on right treatment at right time.

all these information will help me to clear my questions and doubts. I like to hear everything black and white doctors are not telling me everything openly which I understand they have their limits.

There is part of anxiety as well i will say that makes me think however now i know for fact so i will be able to focus on how to ease things down and focus on living better life every day.

xo
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