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  • Are you in a support group for your ankylosing spondylitis?
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Living with ankylosing spondylitis

Are you in a support group for your ankylosing spondylitis?

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avatar JosephineO

JosephineO

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20/09/2018 at 11:54

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avatar JosephineO

JosephineO

Community manager

Last activity on 15/07/2024 at 09:21

Joined in 2018


989 comments posted | 32 in the Living with ankylosing spondylitis group

6 of their responses were helpful to members


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Hello everyone,

Living with such a physically debilitating disease such as ankylosing spondylitis can be very difficult as it impacts many aspects of the sufferers life; from the simple act of getting out of bed in the morning to tying your own shoes. This can feel especially isolating if you don't know anyone else with this condition and no one in your family suffers from it either.

So, are you a member of a support group? If so, how often do you go and have you found comfort there? If you aren't in a support group, why not? 

Please share your experiences with one another :)

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avatar JosephineO

JosephineO

Community manager
10/10/2018 at 09:22

Good advisor

avatar JosephineO

JosephineO

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Last activity on 15/07/2024 at 09:21

Joined in 2018


989 comments posted | 32 in the Living with ankylosing spondylitis group

6 of their responses were helpful to members


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@richard0804 Awh Richard, I am sorry that you are having a flare up, they are never easy :( On the brightside, at least it happened after your trip so you could still enjoy your time with your wife and Toby!

Well the weather is getting colder so definitely do rest up, it is the perfect time to start watching a new series or listening to a new podcast :)

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Josephine, Community Manager


Are you in a support group for your ankylosing spondylitis? https://www.carenity.co.uk/forum/other-discussions/living-with-ankylosing-spondylitis/are-you-in-a-support-group-for-your-ankylosing-spondylitis-2561 2018-10-10 09:22:25

avatar cutejas02

cutejas02

10/10/2018 at 14:01

avatar cutejas02

cutejas02

Last activity on 20/04/2020 at 17:59

Joined in 2018


4 comments posted | 4 in the Living with ankylosing spondylitis group


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Hi Richard , 

Thanks again for keeping us in touch .My brother will be  commencing Corsytex injection soon because the Consultant  said its quite severe AS as he having Psoriasis at the same time and suffers Asthma as well.  His mobility affected as he having planterfascitis too and struggle with walking .He can't do his normal activities like running and playing ball games.Sad it was.  Really thanks for your testimony because it helps us to think and anticipate what are the potential or possible outcome  and expectation of having his illness.  We are based in Bristol. Take care always my dear friend . Chat again to you soon. 

 

Josephine 


Are you in a support group for your ankylosing spondylitis? https://www.carenity.co.uk/forum/other-discussions/living-with-ankylosing-spondylitis/are-you-in-a-support-group-for-your-ankylosing-spondylitis-2561 2018-10-10 14:01:09
avatar exit

Unregistered member

11/10/2018 at 01:40

@cutejas02  Hello Again.

Do you mean the drug, Cosentyx (secukinumab). It is injected under the skin. The drug blocks a protein involved in the inflammatory response that causes plaque psoriasis. Cosentyx is a different kind of medication. It's a treatment for psoriatic arthritis. It works within your body to target the IL-17A protein, which is one of the proteins believed to play a role in causing inflammation in psoriatic arthritis.

I started on an injection called 'HUMIRA', which is a very strong slow release ANTI-TNF painkiller; some two years ago for my A.S. with NO SIDE AFFECTS.  TNF blockers suppress the immune system by blocking the activity of TNF, a substance in the body that can cause inflammation and lead to immune-system diseases, such as rheumatoid arthritis, ankylosing spondylitis, psoriatic arthritis and plaque psoriasis. 

In rheumatoid arthritis, HUMIRA (adalimumab) has a response rate similar to methotrexate, and in combination, it nearly doubles the response rate of methotrexate alone. HUMIRA (adalimumab) is a TNF-inhibiting, anti-inflammatory, biologic medication. By binding to TNFα, adalimumab reduces this inflammatory response.            A biologic drug is a product that is produced from living organisms or contain components of living organisms. Biologics include recombinant (valuable products manufactured from blood plasma) through proteins, tissues, genes, allergens, cells, blood components, blood, and vaccines. Biologics are used to treat numerous disease and conditions, Ankylosing Spondilitis being just one.

I hope that I have explained in a little more detail what the drugs are, and possibly how they may be prescribed at a later date in your brothers' treatment.

Do worry it sounds a lot worse than it is, all this scientific jargon. I'm answering the questions that you probably forgot to ask the consultant. Like I said 'Don't worry'. Just Stay Positive.

Take Good Care of yourselves.  

Richard


Are you in a support group for your ankylosing spondylitis? https://www.carenity.co.uk/forum/other-discussions/living-with-ankylosing-spondylitis/are-you-in-a-support-group-for-your-ankylosing-spondylitis-2561 2018-10-11 01:40:28
avatar exit

Unregistered member

11/10/2018 at 01:47

@JosephineO   Hi Boss

I like to spend time watching the birds in my garden that I 'fatten up' for the winter.....lol...lol


Are you in a support group for your ankylosing spondylitis? https://www.carenity.co.uk/forum/other-discussions/living-with-ankylosing-spondylitis/are-you-in-a-support-group-for-your-ankylosing-spondylitis-2561 2018-10-11 01:47:01

avatar JosephineO

JosephineO

Community manager
11/10/2018 at 09:35

Good advisor

avatar JosephineO

JosephineO

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Last activity on 15/07/2024 at 09:21

Joined in 2018


989 comments posted | 32 in the Living with ankylosing spondylitis group

6 of their responses were helpful to members


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@richard0804 Richard, thanks for providing, my fellow Josephine, with great advice. We all really appreciate your thoughtful responses and care.

I guess the birds must look at you as a father figure these days! :)

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Josephine, Community Manager


Are you in a support group for your ankylosing spondylitis? https://www.carenity.co.uk/forum/other-discussions/living-with-ankylosing-spondylitis/are-you-in-a-support-group-for-your-ankylosing-spondylitis-2561 2018-10-11 09:35:13
avatar exit

Unregistered member

16/10/2018 at 01:53

@cutejas02  Hi Young Lady 

I hope you are well? My wife and I are fine.

How are things going with your brother?


Are you in a support group for your ankylosing spondylitis? https://www.carenity.co.uk/forum/other-discussions/living-with-ankylosing-spondylitis/are-you-in-a-support-group-for-your-ankylosing-spondylitis-2561 2018-10-16 01:53:01

avatar Arjunsingh

Arjunsingh

12/02/2019 at 19:42

avatar Arjunsingh

Arjunsingh

Last activity on 06/11/2024 at 18:45

Joined in 2019


1 comment posted | 1 in the Living with ankylosing spondylitis group


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Hello to every one.

My name is arjun singh from india and i want share my experience by which those who are suffering from Ankylosing Spondylitis they can be 100% cure from pain n stiffness as  i am also a patient of Ankylosing Spondylitis from my experience i am saying this. So please follow the routine which now i am telling you.

You not do anything only the thing is that those who are suffering from Ankylosing Spondylitis can eat only boiled thing no need to eat unboiled thing Ingore fruits, salad n all dont eat fast food because they all are unboiled thing so my point is that what ever you want to eat firstly boiled that thing then after you eat. You can eat boiled rice. You can see the result in 15 day just try this you will 100% cure from this. As i m enjoy my life without pain n stiffness because i follow this diet.

Thank you all. 

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Arjun singh


Are you in a support group for your ankylosing spondylitis? https://www.carenity.co.uk/forum/other-discussions/living-with-ankylosing-spondylitis/are-you-in-a-support-group-for-your-ankylosing-spondylitis-2561 2019-02-12 19:42:58

avatar Ingy50

Ingy50

Edited on 17/12/2023 at 14:08

avatar Ingy50

Ingy50

Last activity on 06/08/2024 at 09:59

Joined in 2023


3 comments posted | 3 in the Living with ankylosing spondylitis group


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To be honest AS ruined my wonderful 20yr loving relationship but my partner found it difficult to see me not anywhere as helpful around the house etc. One day she was going out for about 5hrs and I was feeling fine and went to get up and suddenly collapsed on the floor and was out for a few days only to find that I was in ITU wired up to everything and wondering how I got there, I was diagnosed as having Sepsis which very nearly killed me. My partner came to see me twice but never again and told my daughter to collect my belongings which had to go into storage as she couldn’t cope anymore with my disability. So thank you AS for wrecking my life any happiness , I have tried over 18 months to contacting her but she never replies. Sometimes one can only take so much and if I’m honest I’m getting there fast !!

Ingy50

-.


Are you in a support group for your ankylosing spondylitis? https://www.carenity.co.uk/forum/other-discussions/living-with-ankylosing-spondylitis/are-you-in-a-support-group-for-your-ankylosing-spondylitis-2561 2023-12-17 13:32:36
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