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Psoriasis Club › HealthHealth Boards › Prescribed Treatments For Psoriasis v
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Stelara round two

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Stelara round two
Fred Online Author
I Wanted To Change the World But Got Up Far Too Late.
Moderator
Posts: 67,206
Threads: 3,902
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#101
Thu-15-01-2015, 21:37 PM
(Thu-15-01-2015, 21:19 PM)jiml Wrote:
(Thu-15-01-2015, 21:15 PM)Fred Wrote:
(Thu-15-01-2015, 21:10 PM)jiml Wrote: Heeeerm I didn't hear you say that about me  Big Grin

Old Norfolk boy in a pink tutu V Young Dutch girl in a leather one piece.

Come on  s57

Yep hard luck Caroline looks like you lose  Big Grin

sick
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Caroline Online
You must hurry if you ever want to catch a chicken...
*
Forum Helper
Posts: 26,595
Threads: 113
Joined: Nov 2011
Gender: Female
Location: In between the tulips
Psoriasis Score: 3
Psoriatic Arthritis Score: 3
PQOLS: 4
Treatment: Got back to DMF slow release
#102
Thu-15-01-2015, 21:48 PM
(Thu-15-01-2015, 21:19 PM)jiml Wrote:
(Thu-15-01-2015, 21:15 PM)Fred Wrote:
(Thu-15-01-2015, 21:10 PM)jiml Wrote: Heeeerm I didn't hear you say that about me  Big Grin

Old Norfolk boy in a pink tutu V Young Dutch girl in a leather one piece.

Come on  s57

Yep hard luck Caroline looks like you lose  Big Grin

[carol]Well, i am not so sure that I am losing...[/carol]
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jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#103
Thu-15-01-2015, 21:56 PM
(Thu-15-01-2015, 21:48 PM)Caroline Wrote:
(Thu-15-01-2015, 21:19 PM)jiml Wrote:
(Thu-15-01-2015, 21:15 PM)Fred Wrote:
(Thu-15-01-2015, 21:10 PM)jiml Wrote: Heeeerm I didn't hear you say that about me  Big Grin

Old Norfolk boy in a pink tutu V Young Dutch girl in a leather one piece.

Come on  s57

Yep hard luck Caroline looks like you lose  Big Grin

[carol]Well, i am not so sure that I am losing...[/carol]

[bfrt] well I don't know who would I choose
Mmmm yes you're right. You win [/bfrt]
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Fred Online Author
I Wanted To Change the World But Got Up Far Too Late.
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Posts: 67,206
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Gender: Male
Location: France
Psoriatic Arthritis Score: 1
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Treatment: Bimzelx / Coconut Oil
#104
Wed-21-01-2015, 14:33 PM
OK I'm back from my appointment with my dermatologist, and she was as disappointed as me to see the state of the psoriatic arthritis.

My bloods have shown there has been an inflammation flare up, what caused it we don't know but it is slowly going back down again and I did manage to drive today which was nice as I'm not a good passenger. Mrs Fred was pleased too and she said she noticed I was moving a little better toady.

So back to the appointment, she gave me 5 options.

#1 Yep you guessed it Methotrexate. I refused.
#2 Small Methotrexate injection. I refused.
#3 Go to Rheumatology and see what they say. I've booked an appointment for April to coincide with my next dermatology appointment, as I already know the answer from the last time I went to see them "You have psoriatic arthritis and we prescribe Methotrexate" so that will be a waist of time.
#4 Stay on Stelara and ride out the inflammation with some anti inflammatory pills as and when I feel I need them. I've taken the prescription for the pills just in case I do feel like giving in and taking them.
#5 Give Stelara another try on a double shot again over 3 months instead of 45mg on two months. I wasn't keen as last time I tried 90mg it made me feel like a zombie, but this is what I'm going to do.

I asked about Simponi (only available via Rheumatology) she phoned them and had a chat, but they said NO as I have had a reaction to both Remicade and Humira in the past and they felt the risk was to much as it's a similar product.

I asked about Fumaderm and it's not available in France, and as far as I could work out the trials have been stopped.

I asked about Psorinovo and that is not registered for use in France.

So I'm stuck really, and unless I take Methotrexate with Stelara just to help the psoriatic arthritis there isn't much else they can do for me.  

I'm a stubborn old sod and will not take Methotrexate, I may not even take the anti inflamotories (but will hold onto them for amunition) but another thing I can be is determined and that is what I,m going to do.

I will be concentrating on getting myself back into positive mode, I will take my 90mg of Stelara at the weekend, possibly take an anti inflammatory if needed and just get on with it.

Smile  
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jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
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Treatment: Skilarence 5x120mg a day
#105
Wed-21-01-2015, 14:59 PM (This post was last modified: Wed-21-01-2015, 15:01 PM by jiml.)
Little choice there Fred , but I'm glad you are moving better
Let's hope the Stelara will start to work again.... An antiinflamatory may well give you some relief. Let's hope so, you did well to refuse methotrexate, I also hate it but I will never say never. Perhaps if all else fails ( and I'm hopeful it won't) a low dose of methotrexate together with Stelara might help. ..... Unless your rheumatology department can offer anything else.


Edit jim turns and runs for,the door
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Fred Online Author
I Wanted To Change the World But Got Up Far Too Late.
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#106
Wed-21-01-2015, 15:14 PM
(Wed-21-01-2015, 14:59 PM)jiml Wrote: Little choice there Fred , but I'm glad you are moving better
Let's hope the Stelara will start to work again.... An antiinflamatory may well give you some relief. Let's hope so, you did well to refuse methotrexate, I also hate it but I will never say never. Perhaps if all else fails ( and I'm hopeful it won't) a low dose of methotrexate together with Stelara might help. ..... Unless your rheumatology department can offer anything else.


Edit jim turns and runs for,the door

No it looks like I've run out of options Jim.

I don't hold out much hope with rheumatology they didn't help before.

But all is well Jim, I've just ordered a new Pogo Stick.  Smile
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jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#107
Wed-21-01-2015, 15:58 PM
(Wed-21-01-2015, 15:14 PM)Fred Wrote:
(Wed-21-01-2015, 14:59 PM)jiml Wrote: Little choice there Fred , but I'm glad you are moving better
Let's hope the Stelara will start to work again.... An antiinflamatory may well give you some relief. Let's hope so, you did well to refuse methotrexate, I also hate it but I will never say never. Perhaps if all else fails ( and I'm hopeful it won't) a low dose of methotrexate together with Stelara might help. ..... Unless your rheumatology department can offer anything else.


Edit jim turns and runs for,the door

No it looks like I've run out of options Jim.

I don't hold out much hope with rheumatology they didn't help before.

But all is well Jim, I've just ordered a new Pogo Stick.  Smile
Fred you never run out of options...... You may run out of preferred options but there will always be options
What about otezla that's a tablet and for PSA can't you request that or isn't it approved yet
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Fred Online Author
I Wanted To Change the World But Got Up Far Too Late.
Moderator
Posts: 67,206
Threads: 3,902
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
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Treatment: Bimzelx / Coconut Oil
#108
Wed-21-01-2015, 16:06 PM
(Wed-21-01-2015, 15:58 PM)jiml Wrote: Fred you never run out of options...... You may run out of preferred options but there will always be options
What about otezla that's a tablet and for PSA can't you request that or isn't it approved yet

Nope nothing else approved for use in France Jim, the French don't hurry themselves when it comes to introducing new treatments. They let others do all the hard work and then may do a trial usually a few years behind the rest.  Big Grin

Although we read drugs are approved for use in Europe, that doesn't mean France have approved it for use.

It's France Jim you get used to it after a while, there is no rush.  Cool
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jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#109
Wed-21-01-2015, 16:24 PM
(Wed-21-01-2015, 16:06 PM)Fred Wrote:
(Wed-21-01-2015, 15:58 PM)jiml Wrote: Fred you never run out of options...... You may run out of preferred options but there will always be options
What about otezla that's a tablet and for PSA can't you request that or isn't it approved yet

Nope nothing else approved for use in France Jim, the French don't hurry themselves when it comes to introducing new treatments. They let others do all the hard work and then may do a trial usually a few years behind the rest.  Big Grin

Although we read drugs are approved for use in Europe, that doesn't mean France have approved it for use.

It's France Jim you get used to it after a while, there is no rush.  Cool

Another option is the way Joane in Poland does buy your psorinovo from Holland Joana new to forum .. But that will be expensive
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Fred Online Author
I Wanted To Change the World But Got Up Far Too Late.
Moderator
Posts: 67,206
Threads: 3,902
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#110
Wed-21-01-2015, 16:36 PM
(Wed-21-01-2015, 16:24 PM)jiml Wrote:
(Wed-21-01-2015, 16:06 PM)Fred Wrote:
(Wed-21-01-2015, 15:58 PM)jiml Wrote: Fred you never run out of options...... You may run out of preferred options but there will always be options
What about otezla that's a tablet and for PSA can't you request that or isn't it approved yet

Nope nothing else approved for use in France Jim, the French don't hurry themselves when it comes to introducing new treatments. They let others do all the hard work and then may do a trial usually a few years behind the rest.  Big Grin

Although we read drugs are approved for use in Europe, that doesn't mean France have approved it for use.

It's France Jim you get used to it after a while, there is no rush.  Cool

Another option is the way Joane in Poland does buy your psorinovo from Holland Joana new to forum .. But that will be expensive

No I'm not going that way I have faith in the French health care system and will stick to what is available under their system, plus Psorinovo may not even work for me and they won't be to happy at the hospital when I go back with my tail between my legs asking to go back in their system.

I'm on the long term illness protocol here and get my treatment free, should I go for a medication not recognised by them I would no longer get 100%. That would result in very expensive blood tests, and should I want to go back onto to Stelara if Psorinovo didn't work then it would end up costing me around €30,000 a year.

eek

Nope my mind is made up, I have my choices and now have to move on.  
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