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Advice Please

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13 years 2 months ago #46705 by Honeybear
Advice Please was created by Honeybear
Iam suffering with a (rare) Skin condition,Hidradenitis Suppurativa.Unfortunately not a lot is known about this condition,and there is no cure. Iam now at the stage were its causing me a great deal of pain and distress. At my last appointment with my Dermatologist,he informed me that there's only one option of treatment left to try,Roaccutane. He said that this Drug has many unpleasant side effects,and it might not work. He was not joking,he gave me a leaflet (4 A4 pages long)! This Drug,in my opinion,is very dangerous.

My question is: If I decide not to take this drug, could this work against me at the Atos medical?

I would be grateful for any advice.

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13 years 2 months ago #46708 by Gordon
Replied by Gordon on topic Re:Advice Please
Honeybear

I found a previous discussion on B&W that covers this topic in detail. Have a look at

www.benefitsandwork.co.uk/forum?func=view&catid=13&id=18980

If you have further questions, please come back to the forum.

Gordon

Nothing on this board constitutes legal advice - always consult a professional about specific problems

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  • originaldave
13 years 2 months ago #46712 by originaldave
Replied by originaldave on topic Re:Advice Please
Honeybear wrote:

Iam suffering with a (rare) Skin condition,Hidradenitis Suppurativa.Unfortunately not a lot is known about this condition,and there is no cure. Iam now at the stage were its causing me a great deal of pain and distress. At my last appointment with my Dermatologist,he informed me that there's only one option of treatment left to try,Roaccutane. He said that this Drug has many unpleasant side effects,and it might not work. He was not joking,he gave me a leaflet (4 A4 pages long)! This Drug,in my opinion,is very dangerous.

My question is: If I decide not to take this drug, could this work against me at the Atos medical?

I would be grateful for any advice.


An interesting question .... any drug is dangerous... 2 types of treatment that are very dangerous and have many side affects are chemo and radiotherapy.... they seem to get you stright into support group

The first question is how many people get the very bad side effects ? if its just your dr covering his ass or doing a good job and giving you the info your always suppose to get.....but only 1 in 10000 get the bad stuff they might take it differnt than everyone gets really sick

the drug is only a vitamin used normaly for acne it can damage your liver

I always use US figurers to work out risk :) 13 million people treated in the world and only 5,000 legal actions taken :laugh: mind you one gave it lots of press as $25 millon for IBS

its biggest problem is the warnings of suicide now on packets ....... of course the defence as most people on the drug are teenagers with spots... they are in the group most at risk ?

all this from vit A in high dose :)

if the pain your in causes depression? you should even be offered this drug


you IMO might be able to claim you have something wrong not controlled by normal medication which I think gets people in the support group a mod might know the correct term and words used and where in the books on this site the info is worth a try

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  • Catherine
13 years 2 months ago #46713 by Catherine
Replied by Catherine on topic Re:Advice Please
Patients can refuse treatments on all sorts of grounds, including concerns about side-effects. I think it would be unethical for Atos to attempt to use this against you in anyway.

I think there are other threads on this topic somewhere.

Best wishes

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13 years 2 months ago #46729 by Honeybear
Replied by Honeybear on topic Re:Advice Please
Thank you very much for your help.Yes Dave,this disease causes depression.

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  • RachelPotter
13 years 2 months ago #46736 by RachelPotter
Replied by RachelPotter on topic Re:Advice Please
Hi Honybear, I think it would be good to have a look at this website before you make a decision;

reclaimyourskin.co.uk/

My son has taken these drugs for a few years now. Initially the side affects were difficult for him but for a 14 boy he coped really well.

The fact that he now has lovely skin which isn't too scarred was well worth it for him.

I wish you all the best whatever you decide to do.

Best wishes,
Rachel

ps side affects are noted by ATOS

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