Posts: 4
Threads: 1
Joined: Jun 2014
Gender: Female
Location: UK
Treatment: UBV
Having received narrowband UVB treatment since the 1980s for chronic widespread psoriasis, I have now been told by the hospital that they cannot authorise any further UVB treatment as I have exceeded the safe limit. They say medically they cannot continue even although it works well for me and clears the condition and I have never shown any signs of skin cancer. They are now saying that I must consider Fumaerm or Biologics and I am understandably concerned re any potential side effects or long term effects they may have. At least with UVB I KNOW the risks as they have been tried and tested over the years also with such excellent developments on the treatment of skin cancer if caught early I really would like to continue but can't as my doctors are now refusing to give me that option. Has anyone else out there been in this position, any feedback would be very welcome.
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
Hi Margaux
A big
to the club I hope you have a good time on here we are all very friendly and willing to share our experiences
Mine sounds very similar to yours I had a lifetime allowance of UV and had to come off it
I am now on Fumaderm and have been for a couple of years see [post=7177]
It will tell you of my experience and to be honest I am very happy with Fumaderm
Also have a look at my journey here [post=7208]
Enjoy your time here the site is full of good information
Jim
Posts: 4
Threads: 1
Joined: Jun 2014
Gender: Female
Location: UK
Treatment: UBV
Hello Jim
Thank you so much for the welcome and for the advice. I will look at the links you gave me and appreciate your prompt reply to my plea! I am delighted you are happy with Fumaderm and it works for you - guess I have some reading to do!
Kind regards
Margaux
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
(Thu-19-06-2014, 13:22 PM)Margaux Wrote: Hello Jim
Thank you so much for the welcome and for the advice. I will look at the links you gave me and appreciate your prompt reply to my plea! I am delighted you are happy with Fumaderm and it works for you - guess I have some reading to do!
Kind regards
Margaux
Good luck you will get other responses I am sure but that will give you a bit to read
I have to go out now so will be offline a while
Posts: 4
Threads: 1
Joined: Jun 2014
Gender: Female
Location: UK
Treatment: UBV
Posts: 1,471
Threads: 42
Joined: Jun 2013
Gender: Male
Location: USA
Treatment: >_<
I am sorry you have had treatment that works well for you pulled. I know the feeling. I know you are scared of the sides effects of the new drugs (everyone is initially), but they may not be as bad as you think. In my opinion, biologics are safer than traditional medications such as Methotrexate and biologics such as Humira performs significantly better for plaque psoriasis. The major concerns of biologics are risk associated with if you have had tuberculosis and hepatitis. Also if you have other autoimmune diseases such as MS, drugs like Humira and Enbrel are not recommended. There are a few of us using biologics on this forum and plenty information available on this forum.
Posts: 71,225
Threads: 4,129
Joined: Aug 2011
Gender: Male
Location: France
Psoriasis Score: Zero
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
Hello Margaux
to Psoriasis Club.
I have moved your post here to it's own thread as it will get noticed better.
Yes they will stop UVB after a while, so it's time to start looking at other options.
Don't be to worried about Fumaderm or Bio treatments, at least they haven't put you on Methotrexate.
I've been on Bio's for over 4 years now and they have given me my life back, others have had good results too. The Bio's have gone through very stringent tests over the years, and you will be monitored.
Fumaderm has also given very good results and it's been around a long time.
Have a look at these threads for starters to get an idea and then use the search facility to find even more info.
[thread=132]
[thread=77]
And don't hesitate to dive in, you will find a friendly bunch of people here who understand as well as a wealth of information.
Regards.
Fred.
Posts: 4
Threads: 1
Joined: Jun 2014
Gender: Female
Location: UK
Treatment: UBV
Thank you so much to everyone - I may be offline for a few days now but just wanted to say a huge thanks for all the very helpful feedback and I am going to get on with my reading!!! Nice to know that I have some soulmates out there in fellow sufferers as you know what it's like having such a condition which isolates you sometimes!
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
(Thu-19-06-2014, 22:30 PM)jiml Wrote: Here's another thread to look at [post=2912] written up by Caroline and is very comprehensive
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
(Thu-19-06-2014, 22:26 PM)Margaux Wrote: Thank you so much to everyone - I may be offline for a few days now but just wanted to say a huge thanks for all the very helpful feedback and I am going to get on with my reading!!! Nice to know that I have some soulmates out there in fellow sufferers as you know what it's like having such a condition which isolates you sometimes!
Thank you for coming back, hope to hear more from you in the near future.....
Oh yes we all know the horror of psoriasis and deal with it different ways. It is very isolating and restrictive, you have to be careful to cover up, no dark colours or the snowstorm will show. Embarrassment in the beach and I didn't go to a swimming pool for years.
I hope after reading your way through the forum you will find something that works for you
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