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Psoriasis Club › HealthHealth Boards › Prescribed Treatments For Psoriasis v
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[Split From] Stelara round two

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Threaded Mode
[Split From] Stelara round two
D Foster Offline
“You only live once, but if you do it right, once is enough.”

100 + Member I Just Cant Stop !
Posts: 25,152
Threads: 17
Joined: Dec 2014
Gender: Male
Location: East Yorkshire
Treatment: Stelara 90mg and G&T
#1
Fri-06-02-2015, 20:11 PM
EDIT By Fred: This thread has been split from Stelara round two as it was going off topic.

(Fri-06-02-2015, 11:20 AM)Caroline Wrote:
(Fri-06-02-2015, 09:27 AM)D Foster Wrote:
(Fri-06-02-2015, 07:46 AM)Caroline Wrote: I still don't agree with you Dave.  Big Grin  There are still better ways to go.

I took MTX for 9 years ,6 by mouth and 3 by self injection and even though I am on 90mg of Stelara the relief for my PsA was much better on MTX.The side effects were not good towards the end of the tablets then on injection that settled down but built up again so I came off it however for the P it never cleared it but as I said for the PsA yes it was good. I can think of many other treatments that are worse and if you are very careful and monitor it then it is OK , PsA is extremely painful and I am lucky because I am not as bad as Fred.I take Tramadol and would argue that this is as bad as MTX in many ways especially as it only masks the pain leaving the joints alone which MTX does effect. A catch 22 situation prevails so where do you go ,it's just a matter of trying to play it safe as you can to get some relief.

I took MTX for three weeks. After that three weeks, there was only one thing in my mind. "I don't wanna die so young, I must get rid of this stuff"....
So I had the luck to stumble upon DMF, which you have not used Smile, upto now I am very lucky with that.
As far as I am aware Caroline DMF is not approved in UK though I will stand to be corrected, I have been looking at it and it would appear to be not fully understood how it works . Do you have blood checks to make sure that after taking it everything is OK ?
It appears to be very good at removing mould from leather ! I took Cyclosporine and that had the same effect on me as MTX had on you , what works for one does not work for another as we all react in a different way.  There are not many treatments that I have not had over the many years I have had this dam problem ,I had one on a trail that I cannot remember what it was called that caused my toe nails to grow through the side of my toe and that was quite painful.
Quote
Caroline Offline
You must hurry if you ever want to catch a chicken...
*
Forum Helper
Posts: 26,503
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
#2
Fri-06-02-2015, 20:20 PM
(Fri-06-02-2015, 20:11 PM)D Foster Wrote:
(Fri-06-02-2015, 11:20 AM)Caroline Wrote:
(Fri-06-02-2015, 09:27 AM)D Foster Wrote:
(Fri-06-02-2015, 07:46 AM)Caroline Wrote: I still don't agree with you Dave.  Big Grin  There are still better ways to go.

I took MTX for 9 years ,6 by mouth and 3 by self injection and even though I am on 90mg of Stelara the relief for my PsA was much better on MTX.The side effects were not good towards the end of the tablets then on injection that settled down but built up again so I came off it however for the P it never cleared it but as I said for the PsA yes it was good. I can think of many other treatments that are worse and if you are very careful and monitor it then it is OK , PsA is extremely painful and I am lucky because I am not as bad as Fred.I take Tramadol and would argue that this is as bad as MTX in many ways especially as it only masks the pain leaving the joints alone which MTX does effect. A catch 22 situation prevails so where do you go ,it's just a matter of trying to play it safe as you can to get some relief.

I took MTX for three weeks. After that three weeks, there was only one thing in my mind. "I don't wanna die so young, I must get rid of this stuff"....
So I had the luck to stumble upon DMF, which you have not used Smile, upto now I am very lucky with that.
As far as I am aware Caroline DMF is not approved in UK though I will stand to be corrected, I have been looking at it and it would appear to be not fully understood how it works . Do you have blood checks to make sure that after taking it everything is OK ?
It appears to be very good at removing mould from leather ! I took Cyclosporine and that had the same effect on me as MTX had on you , what works for one does not work for another as we all react in a different way.  There are not many treatments that I have not had over the many years I have had this dam problem ,I had one on a trail that I cannot remember what it was called that caused my toe nails to grow through the side of my toe and that was quite painful.

Dave, read my thread on Dimethylfumarates and Psoriasis, and you will know more.
Approval is an adminisitrative process, this is a medication that is already more than 30 years old. It has proven itself in practice, that is the real importance.
Quote
D Foster Offline Author
“You only live once, but if you do it right, once is enough.”

100 + Member I Just Cant Stop !
Posts: 25,152
Threads: 17
Joined: Dec 2014
Gender: Male
Location: East Yorkshire
Treatment: Stelara 90mg and G&T
#3
Fri-06-02-2015, 20:23 PM
(Fri-06-02-2015, 20:20 PM)Caroline Wrote:
(Fri-06-02-2015, 20:11 PM)D Foster Wrote:
(Fri-06-02-2015, 11:20 AM)Caroline Wrote:
(Fri-06-02-2015, 09:27 AM)D Foster Wrote:
(Fri-06-02-2015, 07:46 AM)Caroline Wrote: I still don't agree with you Dave.  Big Grin  There are still better ways to go.

I took MTX for 9 years ,6 by mouth and 3 by self injection and even though I am on 90mg of Stelara the relief for my PsA was much better on MTX.The side effects were not good towards the end of the tablets then on injection that settled down but built up again so I came off it however for the P it never cleared it but as I said for the PsA yes it was good. I can think of many other treatments that are worse and if you are very careful and monitor it then it is OK , PsA is extremely painful and I am lucky because I am not as bad as Fred.I take Tramadol and would argue that this is as bad as MTX in many ways especially as it only masks the pain leaving the joints alone which MTX does effect. A catch 22 situation prevails so where do you go ,it's just a matter of trying to play it safe as you can to get some relief.

I took MTX for three weeks. After that three weeks, there was only one thing in my mind. "I don't wanna die so young, I must get rid of this stuff"....
So I had the luck to stumble upon DMF, which you have not used Smile, upto now I am very lucky with that.
As far as I am aware Caroline DMF is not approved in UK though I will stand to be corrected, I have been looking at it and it would appear to be not fully understood how it works . Do you have blood checks to make sure that after taking it everything is OK ?
It appears to be very good at removing mould from leather ! I took Cyclosporine and that had the same effect on me as MTX had on you , what works for one does not work for another as we all react in a different way.  There are not many treatments that I have not had over the many years I have had this dam problem ,I had one on a trail that I cannot remember what it was called that caused my toe nails to grow through the side of my toe and that was quite painful.

Dave, read my thread on dimethylfumarates and psoriasis, and you will know more.
Approval is an adminisitrative process, this is a medication that is already more than 30 years old. It has proven itself in practice, that is the real importance.
I will have a read Caroline ,do you have any monitoring process though to make sure all is well. MTX is much older than 30 years in fact I believe that it's over 50 years since they started using it.
Quote
Caroline Offline
You must hurry if you ever want to catch a chicken...
*
Forum Helper
Posts: 26,503
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
#4
Fri-06-02-2015, 20:36 PM
(Fri-06-02-2015, 20:23 PM)D Foster Wrote:
(Fri-06-02-2015, 20:20 PM)Caroline Wrote:
(Fri-06-02-2015, 20:11 PM)D Foster Wrote:
(Fri-06-02-2015, 11:20 AM)Caroline Wrote:
(Fri-06-02-2015, 09:27 AM)D Foster Wrote: I took MTX for 9 years ,6 by mouth and 3 by self injection and even though I am on 90mg of Stelara the relief for my PsA was much better on MTX.The side effects were not good towards the end of the tablets then on injection that settled down but built up again so I came off it however for the P it never cleared it but as I said for the PsA yes it was good. I can think of many other treatments that are worse and if you are very careful and monitor it then it is OK , PsA is extremely painful and I am lucky because I am not as bad as Fred.I take Tramadol and would argue that this is as bad as MTX in many ways especially as it only masks the pain leaving the joints alone which MTX does effect. A catch 22 situation prevails so where do you go ,it's just a matter of trying to play it safe as you can to get some relief.

I took MTX for three weeks. After that three weeks, there was only one thing in my mind. "I don't wanna die so young, I must get rid of this stuff"....
So I had the luck to stumble upon DMF, which you have not used Smile, upto now I am very lucky with that.
As far as I am aware Caroline DMF is not approved in UK though I will stand to be corrected, I have been looking at it and it would appear to be not fully understood how it works . Do you have blood checks to make sure that after taking it everything is OK ?
It appears to be very good at removing mould from leather ! I took Cyclosporine and that had the same effect on me as MTX had on you , what works for one does not work for another as we all react in a different way.  There are not many treatments that I have not had over the many years I have had this dam problem ,I had one on a trail that I cannot remember what it was called that caused my toe nails to grow through the side of my toe and that was quite painful.

Dave, read my thread on dimethylfumarates and psoriasis, and you will know more.
Approval is an adminisitrative process, this is a medication that is already more than 30 years old. It has proven itself in practice, that is the real importance.
I will have a read Caroline ,do you have any monitoring process though to make sure all is well. MTX is much older than 30 years in fact I believe that it's over 50 years since they started using it.

Yes, there is a carefully designed protocol.
Difference is that MTX is an immuno suppressor and very toxic, DMF explicitly not but has a whole different approach and is not toxic. That is easy to feel if you use it. Smile
Quote
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
#5
Fri-06-02-2015, 20:43 PM (This post was last modified: Fri-06-02-2015, 20:48 PM by jiml.)
(Fri-06-02-2015, 20:11 PM)D Foster Wrote:
(Fri-06-02-2015, 11:20 AM)Caroline Wrote:
(Fri-06-02-2015, 09:27 AM)D Foster Wrote:
(Fri-06-02-2015, 07:46 AM)Caroline Wrote: I still don't agree with you Dave.  Big Grin  There are still better ways to go.

I took MTX for 9 years ,6 by mouth and 3 by self injection and even though I am on 90mg of Stelara the relief for my PsA was much better on MTX.The side effects were not good towards the end of the tablets then on injection that settled down but built up again so I came off it however for the P it never cleared it but as I said for the PsA yes it was good. I can think of many other treatments that are worse and if you are very careful and monitor it then it is OK , PsA is extremely painful and I am lucky because I am not as bad as Fred.I take Tramadol and would argue that this is as bad as MTX in many ways especially as it only masks the pain leaving the joints alone which MTX does effect. A catch 22 situation prevails so where do you go ,it's just a matter of trying to play it safe as you can to get some relief.

I took MTX for three weeks. After that three weeks, there was only one thing in my mind. "I don't wanna die so young, I must get rid of this stuff"....
So I had the luck to stumble upon DMF, which you have not used Smile, upto now I am very lucky with that.
As far as I am aware Caroline DMF is not approved in UK though I will stand to be corrected, I have been looking at it and it would appear to be not fully understood how it works . Do you have blood checks to make sure that after taking it everything is OK ?
It appears to be very good at removing mould from leather ! I took Cyclosporine and that had the same effect on me as MTX had on you , what works for one does not work for another as we all react in a different way.  There are not many treatments that I have not had over the many years I have had this dam problem ,I had one on a trail that I cannot remember what it was called that caused my toe nails to grow through the side of my toe and that was quite painful.

Dmf is available here for plaque psoriasis as Fumaderm my drug  Dave although it would work for psoriatic arthritis as well it's not being used for that for some reason I can't fathom out
Yes Dmf is used as a preservative but it does have a terrific effect on psoriasis it's not for use as a topical as was found out when it was used to protect furniture being shipped from China it caused several nasty rashes and illness I believe when people started using their sofas
Quote
Caroline Offline
You must hurry if you ever want to catch a chicken...
*
Forum Helper
Posts: 26,503
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
#6
Fri-06-02-2015, 21:12 PM
(Fri-06-02-2015, 20:43 PM)jiml Wrote:
(Fri-06-02-2015, 20:11 PM)D Foster Wrote:
(Fri-06-02-2015, 11:20 AM)Caroline Wrote:
(Fri-06-02-2015, 09:27 AM)D Foster Wrote:
(Fri-06-02-2015, 07:46 AM)Caroline Wrote: I still don't agree with you Dave.  Big Grin  There are still better ways to go.

I took MTX for 9 years ,6 by mouth and 3 by self injection and even though I am on 90mg of Stelara the relief for my PsA was much better on MTX.The side effects were not good towards the end of the tablets then on injection that settled down but built up again so I came off it however for the P it never cleared it but as I said for the PsA yes it was good. I can think of many other treatments that are worse and if you are very careful and monitor it then it is OK , PsA is extremely painful and I am lucky because I am not as bad as Fred.I take Tramadol and would argue that this is as bad as MTX in many ways especially as it only masks the pain leaving the joints alone which MTX does effect. A catch 22 situation prevails so where do you go ,it's just a matter of trying to play it safe as you can to get some relief.

I took MTX for three weeks. After that three weeks, there was only one thing in my mind. "I don't wanna die so young, I must get rid of this stuff"....
So I had the luck to stumble upon DMF, which you have not used Smile, upto now I am very lucky with that.
As far as I am aware Caroline DMF is not approved in UK though I will stand to be corrected, I have been looking at it and it would appear to be not fully understood how it works . Do you have blood checks to make sure that after taking it everything is OK ?
It appears to be very good at removing mould from leather ! I took Cyclosporine and that had the same effect on me as MTX had on you , what works for one does not work for another as we all react in a different way.  There are not many treatments that I have not had over the many years I have had this dam problem ,I had one on a trail that I cannot remember what it was called that caused my toe nails to grow through the side of my toe and that was quite painful.

Dmf is available here for plaque psoriasis as Fumaderm my drug  Dave although it would work for psoriatic arthritis as well it's not being used for that for some reason I can't fathom out
Yes Dmf is used as a preservative but it does have a terrific effect on psoriasis it's not for use as a topical as was found out when it was used to protect furniture being shipped from China it caused several nasty rashes and illness I believe when people started using their sofas
Jim, I think it is not positioned for PsA, because derm's are aiming at only skin problems. They don't care for PsA. That it is the same disease is just not seen by them. At least that is apparent.
In the mean time the rheumatologists think that treating PsA with DMF would be strange as it is used for psoriasis.
Recently that limited view is slowly changing, nothing is so conventional as the medical world. It is changing due the the coming of Tecfidera. Now some doctors, due to more research also, begin to see that DMF apparently is working against almost all auto immune diseases. We now already know PsA and MS (in its first stages, so don't wait too long), but also Crohn probably Rheuma, but there is another one that is in investigation (hear that confidentially, cannot share yet).
Quote
D Foster Offline Author
“You only live once, but if you do it right, once is enough.”

100 + Member I Just Cant Stop !
Posts: 25,152
Threads: 17
Joined: Dec 2014
Gender: Male
Location: East Yorkshire
Treatment: Stelara 90mg and G&T
#7
Fri-06-02-2015, 22:03 PM
(Fri-06-02-2015, 21:12 PM)Caroline Wrote:
(Fri-06-02-2015, 20:43 PM)jiml Wrote:
(Fri-06-02-2015, 20:11 PM)D Foster Wrote:
(Fri-06-02-2015, 11:20 AM)Caroline Wrote:
(Fri-06-02-2015, 09:27 AM)D Foster Wrote: I took MTX for 9 years ,6 by mouth and 3 by self injection and even though I am on 90mg of Stelara the relief for my PsA was much better on MTX.The side effects were not good towards the end of the tablets then on injection that settled down but built up again so I came off it however for the P it never cleared it but as I said for the PsA yes it was good. I can think of many other treatments that are worse and if you are very careful and monitor it then it is OK , PsA is extremely painful and I am lucky because I am not as bad as Fred.I take Tramadol and would argue that this is as bad as MTX in many ways especially as it only masks the pain leaving the joints alone which MTX does effect. A catch 22 situation prevails so where do you go ,it's just a matter of trying to play it safe as you can to get some relief.

I took MTX for three weeks. After that three weeks, there was only one thing in my mind. "I don't wanna die so young, I must get rid of this stuff"....
So I had the luck to stumble upon DMF, which you have not used Smile, upto now I am very lucky with that.
As far as I am aware Caroline DMF is not approved in UK though I will stand to be corrected, I have been looking at it and it would appear to be not fully understood how it works . Do you have blood checks to make sure that after taking it everything is OK ?
It appears to be very good at removing mould from leather ! I took Cyclosporine and that had the same effect on me as MTX had on you , what works for one does not work for another as we all react in a different way.  There are not many treatments that I have not had over the many years I have had this dam problem ,I had one on a trail that I cannot remember what it was called that caused my toe nails to grow through the side of my toe and that was quite painful.

Dmf is available here for plaque psoriasis as Fumaderm my drug  Dave although it would work for psoriatic arthritis as well it's not being used for that for some reason I can't fathom out
Yes Dmf is used as a preservative but it does have a terrific effect on psoriasis it's not for use as a topical as was found out when it was used to protect furniture being shipped from China it caused several nasty rashes and illness I believe when people started using their sofas
Jim, I think it is not positioned for PsA, because derm's are aiming at only skin problems. They don't care for PsA. That it is the same disease is just not seen by them. At least that is apparent.
In the mean time the rheumatologists think that treating PsA with DMF would be strange as it is used for psoriasis.
Recently that limited view is slowly changing, nothing is so conventional as the medical world. It is changing due the the coming of Tecfidera. Now some doctors, due to more research also, begin to see that DMF apparently is working against almost all auto immune diseases.  We now already know PsA and MS (in its first stages, so don't wait too long), but also Crohn probably Rheuma, but there is another one that is in investigation (hear that confidentially, cannot share yet).
No Jim that is one that I have not had ,it seems to be effective as you and Caroline can vouch for it with results.Did it mean Jim that when you bought a Chinese sofa it came with a cure for P at the same time, they must have missed that or DFS would include in their sales patter. My problem with my toenails went on for many years with ingrowing ones and when I started taking Stelara it settled down and now I do not have any problems.
Quote
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
#8
Fri-06-02-2015, 22:43 PM
You jest about the sofas but if you look at Bills thread on DMF it is similar stuff he sprinkles on his food and gets great results  he buys a kilo at a time Bill's pure dimethylfumarate thread
Quote
D Foster Offline Author
“You only live once, but if you do it right, once is enough.”

100 + Member I Just Cant Stop !
Posts: 25,152
Threads: 17
Joined: Dec 2014
Gender: Male
Location: East Yorkshire
Treatment: Stelara 90mg and G&T
#9
Fri-06-02-2015, 22:48 PM
(Fri-06-02-2015, 22:43 PM)jiml Wrote: You jest about the sofas but if you look at Bills thread on DMF it is similar stuff he sprinkles on his food and gets great results  he buys a kilo at a time Bill's pure dimethylfumarate thread

I will have a look and at Caroline's but I have not had much time to have a good look round ,my only concern is that if you do it like that the dose is not controlled and you are not checked.
Quote
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
#10
Fri-06-02-2015, 22:50 PM
(Fri-06-02-2015, 22:48 PM)D Foster Wrote:
(Fri-06-02-2015, 22:43 PM)jiml Wrote: You jest about the sofas but if you look at Bills thread on DMF it is similar stuff he sprinkles on his food and gets great results  he buys a kilo at a time Bill's pure dimethylfumarate thread

I will have a look and at Caroline's but I have not had much time to have a good look round ,my only concern is that if you do it like that the dose is not controlled and you are not checked.
Read his thread you will be surprised
Quote
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