Psoriasis Club
  • Forum
  • Home
  • Portal
  • Member List
  • Psoriasis Score
  • PQOLS
  • What is psoriasis
  • Search
  • Help
Hello Guest, Welcome To The Psoriasis Club Forum. We are a self funded friendly group of people who understand.
Never be alone with psoriasis, come and join us. (Members see a lot more than you)
wave
Login Register
Login
Username:
Password:
Lost Password?
 
Psoriasis Club › HealthHealth Boards › Prescribed Treatments For Psoriasis v
« Previous 1 15 16 17 18 19 26 Next »

Question about fumaderm

Pages (7): « Previous 1 2 3 4 5 6 7 Next »
Jump to page 
Threaded Mode
Question about fumaderm
braye lodge Offline Author
Member


Posts: 45
Threads: 3
Joined: Feb 2016
Gender: Female
Location: Ireland
Treatment: Fumaderm
#31
Wed-10-02-2016, 14:37 PM
(Wed-10-02-2016, 14:36 PM)braye lodge Wrote:
(Wed-10-02-2016, 13:52 PM)jiml Wrote: Yes Braye Fumaderm main ingredient is Dimethyl fumerate, DMF 120mg. with additives ....(ethyl hydrogen fumerate, calcium salt). And (ethyl hydrogen fumerate, magnesium salt) and (ethyl hydrogen fumerate, zinc salt) but the active ingredient is the Dimethyl fumerate

I believe Psorinovo is pure Dimethyl fumerate without the additives

Can it become less sffective over time it's difficult to say, but I have been on it a long time now and my dose is the same as yours .....so there is room to increase it should it become less effective

But we are all different and nobody can say for sure how long a treatment will still work for you.... This is one reason I have been experimenting with taking it 5 days a week and letting my body manage at weekends without DMF .... In the hope that I can stay on the drug longer, as you know I'm not a young man and have struggled all my life with psoriasis, and this is the longest a treatment has worked for me, I've had to adjust the dose when my lymphocyte levels dropped, but they bounced back up and have been fine since ( do have a monthly blood test ) as you don't want a really low lymphocyte count.....

I would hope this is my drug for life, I'm enjoying life more than I ever did before, I hope it's as kind to you as it has been to me, and you get many years flake free with it...... Thumb

I'm afraid it doesn't seem to matter which drug you are on there's always a chance it will stop working for you  Confused

Caroline will hopefully know how people get the Psorinovo  from Holland

I'd prefere not take additives but not much i can do about that. Sounds like the fumaderm is having positive effects for both of us. 

My sister is on mtx which worries me, especially when she's so young. She's recently had problems with her liver and they just reduce the dose. Trying to inform her about the fumaderm. I haven't seen her in a while so maybe once she sees my improvement, she may convert. 

Psorinovo is additive free?
Sorry you already answered that  Rolleyes
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
#32
Wed-10-02-2016, 15:03 PM
(Wed-10-02-2016, 14:36 PM)braye lodge Wrote:
(Wed-10-02-2016, 13:52 PM)jiml Wrote: Yes Braye Fumaderm main ingredient is Dimethyl fumerate, DMF 120mg. with additives ....(ethyl hydrogen fumerate, calcium salt). And (ethyl hydrogen fumerate, magnesium salt) and (ethyl hydrogen fumerate, zinc salt) but the active ingredient is the Dimethyl fumerate

I believe Psorinovo is pure Dimethyl fumerate without the additives

Can it become less sffective over time it's difficult to say, but I have been on it a long time now and my dose is the same as yours .....so there is room to increase it should it become less effective

But we are all different and nobody can say for sure how long a treatment will still work for you.... This is one reason I have been experimenting with taking it 5 days a week and letting my body manage at weekends without DMF .... In the hope that I can stay on the drug longer, as you know I'm not a young man and have struggled all my life with psoriasis, and this is the longest a treatment has worked for me, I've had to adjust the dose when my lymphocyte levels dropped, but they bounced back up and have been fine since ( do have a monthly blood test ) as you don't want a really low lymphocyte count.....

I would hope this is my drug for life, I'm enjoying life more than I ever did before, I hope it's as kind to you as it has been to me, and you get many years flake free with it...... Thumb

I'm afraid it doesn't seem to matter which drug you are on there's always a chance it will stop working for you  Confused

Caroline will hopefully know how people get the Psorinovo  from Holland

I'd prefere not take additives but not much i can do about that. Sounds like the fumaderm is having positive effects for both of us. 

My sister is on mtx which worries me, especially when she's so young. She's recently had problems with her liver and they just reduce the dose. Trying to inform her about the fumaderm. I haven't seen her in a while so maybe once she sees my improvement, she may convert. 

Psorinovo is additive free?

Yes psorinovo is additive free,

Your sister is on mtx for psoriasis? Whatever it's for with a liver i would get off that as soon as possible .... You only have one liver and it needs protecting . Yes if you can tell her the advantages of Fumaderm and point her here if you like
Quote
Caroline Offline
You must hurry if you ever want to catch a chicken...
*
Forum Helper
Posts: 26,502
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
#33
Wed-10-02-2016, 15:26 PM
(Wed-10-02-2016, 13:27 PM)braye lodge Wrote:
(Wed-10-02-2016, 07:09 AM)Caroline Wrote:
(Wed-10-02-2016, 01:40 AM)jiml Wrote:
(Wed-10-02-2016, 00:53 AM)braye lodge Wrote:
(Wed-10-02-2016, 00:40 AM)braye lodge Wrote: You see ive been living in guernsey for 2 years. When i first came i had to go on a waiting list for the dermatolgist. I had previously been on methotrexate and it didnt agree with me. I then went onto cyclosporine  which also didnt agree with me. Now on fumaderm over 6months. Its the best its ever been in 12 years.My quailty of life has improved dramatically, but now im worried about the cost of it in ireland. Im also worried that ill have to wait a long time until i see a dermatoligist publicly

Also from reading another post ive discovered dmf, is this the same as fumaderm. I ask this because, someone has said it was cheaper?
Yes psorinovo just DMF and is cheaper than Fumaderm as is raw DMF....but .......

(A) I don't know if  you can get psorinovo in Ireland although Caroline will tell you how much it costs and if you can purchase it

Hi Braye,

Welcome to the forum.  Hope you will have a good time over here with us.
Up to now I have followed the discussion as Jim and Fred did a very good job and I did not have to step in yet.
Now Jim mentioned my name, so I am really triggered.
I wrote a threat about DMF which is over here Dimethylfumarates and Psoriasis, so there you can read why it works for you and I am glad it does.
The working ingredient of Fumaderm is the DMF. The other substances in it do nothing against your psoriasis. The medication I take, Psorinovo is plain DMF, but contained in a package that protects your stomach and is released slowly in your intestines, and the last thing is very important, as it removes lots of the side effects.
It can be ordered from the Netherlands, that is the only place where it is produced. I think, but am not sure as I normally don't see the invoice as this goes to my insurance, I pay about €400-€500 for 600 pills.  
E.g. Joana from Poland orders it in the Netherlands, that seems to work without complications.

Quote:(B) Bills method is fascinating watching and learning from him how effective it is and a fraction of the cost of tablets ... And not to be recommended  Big Grin

Bill is a special case. He is considered as "our Professor" over here at the forum. His starting point is pure DMF, which is very cheap available on the world market.
I think that what he does is doable for any of us, as long as you are secure enough for the detailed steps he takes.
What we certainly can learn from him is the intermittent use of the DMF. So e.g. take the medication during the week and have a rest in the weekend. It has several advantages. Your "system" does not get used to the DMF which is a risk as than it may get less effective and it is better for your lymphocytes, who have the time to recover in the weekend.
keeping an eye on your blood counts remains very important !!!!!

I read you are in your early 20's. Smile You are even younger than me!  Big Grin  Then DMF is a good way to go, here in NL I know more who started very young on DMF and still are going strong. It is a medication with minor problems. Way way better than MTX and cyclosporine.

Cheers,
Caroline
Thanks caroline, yeah glad to find something thats worked so far. 

Okay so dmf is an ingrediant in fumaderm and psorinovo has less side effects ? 

So can fumaderm become less effective over time?  Confused 

I Didn't think you could order from netherlands. Thought it was up to the pharmacy to make thr order?

I think anybody can order from anywhere. You also can buy books from amazon in the States right?  Always think out of the box, more is possible than you think. Smile
You can send a PM to Joana on how she does it. Or I can give you a phone number and you can ask for it yourself on what you need to order it.

Yes. DMF is the working ingredient.
Yes. Psorinovo has less side effects. Virtually no cramps. And no threat for the kidneys. No additives which makes it possible to even increase to 12 pills a day. The only limit is the effect on the lymphocytes.
Yes, Fumaderm and Psorinovo can become less effective over time. But that more has to do with your body and the way your body deals with it, than with the medication. Therefore the advice to take it intermittently.
Still DMF belongs to the type of medications that can and are used for very long times. I am using it more than 10 years now, no sign of decline. I know people who are on the range of 15 to 20 years of use without problems.

And for your sister... how young is she?
MTX is a chemotherapy....  be very careful with it. !
Quote
ccarr06 Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 108
Threads: 7
Joined: Oct 2014
Gender: Female
Location: Ireland
Treatment: Stelers
#34
Sat-13-02-2016, 18:58 PM
Hi Brave lodge!
So sorry for not seeing this earlier. Fumaderm isn't texhnically licenced here I think, but a consultant can prescribe it. I'm fairly certain VHI won't cover it, and unfortunately you can't get the medical card to cover the cost. What you can do, is apply for a drug payment scheme card (DPS card). If you get it, it will mean you won't more than €144 a month for your prescriptions. fumaderm is ridiculously expensive here, so you should get it on the basis alone. I'm on little above minimum wage, and can't get any other kind of help with it. It is a lot to pay, but if it's possible and you can afford the €144, but if it works, it's worth it.

Hope that helps! If you have any other questions, feel free to message me!
Quote
Bill Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 1,624
Threads: 6
Joined: Dec 2012
Gender: Male
Location: Queensland
Treatment: Dimethyl fumarate
#35
Sat-13-02-2016, 23:47 PM
Welcome Braye. There is also a fellow in Germany who makes up his own capsules (for MS). I think it costs him about 120 Euros a year, but I am not sure. I got mine from a company in Shanghai (DMF is a mass produced industrial chemical used to make paint and glue, so it is fairly cheap and of good quality). The dose I am on now costs a little under $14 US a year. My actions in self medicating are more reckless than considered, but my continued success with the treatment suggests that I made the right choice. It is an amazing drug if you can cope with the side effects.
Quote
Caroline Offline
You must hurry if you ever want to catch a chicken...
*
Forum Helper
Posts: 26,502
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
#36
Sun-14-02-2016, 09:50 AM
(Sat-13-02-2016, 23:47 PM)Bill Wrote: Welcome Braye. There is also a fellow in Germany who makes up his own capsules (for MS). I think it costs him about 120 Euros a year, but I am not sure. I got mine from a company in Shanghai (DMF is a mass produced industrial chemical used to make paint and glue, so it is fairly cheap and of good quality). The dose I am on now costs a little under $14 US a year. My actions in self medicating are more reckless than considered, but my continued success with the treatment suggests that I made the right choice. It is an amazing drug if you can cope with the side effects.

Yes, he's a doctor who treats himself against MS. He has his own website, but I lost the location of it.
Quote
Bill Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 1,624
Threads: 6
Joined: Dec 2012
Gender: Male
Location: Queensland
Treatment: Dimethyl fumarate
#37
Sun-14-02-2016, 10:30 AM
What is more he is a biochemist and very helpful and informative. I did read some critical comments (relating to sourcing the raw material and putting it in enteric capsules) on an MS website, but I found them a little silly considering that I have passed the 3 year mark without harm. He suggested to me that I have an easier job self-medicating for psoriasis and psa as the disease activity is self-evident, but you still need to have your blood checked at regular intervals.
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
#38
Sun-14-02-2016, 13:00 PM
(Sat-13-02-2016, 18:58 PM)ccarr06 Wrote: Hi Brave lodge!
So sorry for not seeing this earlier. Fumaderm isn't texhnically licenced here I think, but a consultant can prescribe it. I'm fairly certain VHI won't cover it, and unfortunately you can't get the medical card to cover the cost. What you can do, is apply for a drug payment scheme card (DPS card). If you get it, it will mean you won't more than €144 a month for your prescriptions. fumaderm is ridiculously expensive here, so you should get it on the basis alone.  I'm on little above minimum wage, and can't get any other kind of help with it. It is a lot to pay, but if it's possible and you can afford the €144, but if it works, it's worth it.

Hope that helps! If you have any other questions, feel free to message me!

Thanks that's an interesting answer Ccarr I hope that will be interesting to Braye and others who live in Ireland Thumb
Quote
braye lodge Offline Author
Member


Posts: 45
Threads: 3
Joined: Feb 2016
Gender: Female
Location: Ireland
Treatment: Fumaderm
#39
Tue-16-02-2016, 15:54 PM
(Wed-10-02-2016, 15:03 PM)jiml Wrote:
(Wed-10-02-2016, 14:36 PM)braye lodge Wrote:
(Wed-10-02-2016, 13:52 PM)jiml Wrote: Yes Braye Fumaderm main ingredient is Dimethyl fumerate, DMF 120mg. with additives ....(ethyl hydrogen fumerate, calcium salt). And (ethyl hydrogen fumerate, magnesium salt) and (ethyl hydrogen fumerate, zinc salt) but the active ingredient is the Dimethyl fumerate

I believe Psorinovo is pure Dimethyl fumerate without the additives

Can it become less sffective over time it's difficult to say, but I have been on it a long time now and my dose is the same as yours .....so there is room to increase it should it become less effective

But we are all different and nobody can say for sure how long a treatment will still work for you.... This is one reason I have been experimenting with taking it 5 days a week and letting my body manage at weekends without DMF .... In the hope that I can stay on the drug longer, as you know I'm not a young man and have struggled all my life with psoriasis, and this is the longest a treatment has worked for me, I've had to adjust the dose when my lymphocyte levels dropped, but they bounced back up and have been fine since ( do have a monthly blood test ) as you don't want a really low lymphocyte count.....

I would hope this is my drug for life, I'm enjoying life more than I ever did before, I hope it's as kind to you as it has been to me, and you get many years flake free with it...... Thumb

I'm afraid it doesn't seem to matter which drug you are on there's always a chance it will stop working for you  Confused

Caroline will hopefully know how people get the Psorinovo  from Holland

I'd prefere not take additives but not much i can do about that. Sounds like the fumaderm is having positive effects for both of us. 

My sister is on mtx which worries me, especially when she's so young. She's recently had problems with her liver and they just reduce the dose. Trying to inform her about the fumaderm. I haven't seen her in a while so maybe once she sees my improvement, she may convert. 

Psorinovo is additive free?

Yes psorinovo is additive free,

Your sister is on mtx for psoriasis? Whatever it's for with a  liver i would get off that as soon as possible .... You only have one liver and it needs protecting . Yes if you can tell her the advantages of Fumaderm and point her here if you like

She said she's happy with it for the minute. It's her body her choice
Quote
braye lodge Offline Author
Member


Posts: 45
Threads: 3
Joined: Feb 2016
Gender: Female
Location: Ireland
Treatment: Fumaderm
#40
Tue-16-02-2016, 16:10 PM
(Sun-14-02-2016, 13:00 PM)jiml Wrote:
(Sat-13-02-2016, 18:58 PM)ccarr06 Wrote: Hi Brave lodge!
So sorry for not seeing this earlier. Fumaderm isn't texhnically licenced here I think, but a consultant can prescribe it. I'm fairly certain VHI won't cover it, and unfortunately you can't get the medical card to cover the cost. What you can do, is apply for a drug payment scheme card (DPS card). If you get it, it will mean you won't more than €144 a month for your prescriptions. fumaderm is ridiculously expensive here, so you should get it on the basis alone.  I'm on little above minimum wage, and can't get any other kind of help with it. It is a lot to pay, but if it's possible and you can afford the €144, but if it works, it's worth it.

Hope that helps! If you have any other questions, feel free to message me!

Thanks that's an interesting answer Ccarr I hope that will be interesting to Braye and others who live in Ireland  Thumb

Thank you for the info. Hope it is licensed.
Quote
« Next Oldest | Next Newest »
Pages (7): « Previous 1 2 3 4 5 6 7 Next »
Jump to page 


Possibly Related Threads…
Thread Author Replies Views Last Post
  Question about Humira YvonS 9 10,944 Sat-18-09-2021, 00:54 AM
Last Post: KatT
  Silly question about Methodextrate YvonS 16 13,433 Fri-02-07-2021, 21:26 PM
Last Post: YvonS
  Probably dumb phototherapy question Imapsomom 10 11,017 Sun-14-10-2018, 18:56 PM
Last Post: Imapsomom
  Question about Cosentyx martin222 42 49,610 Fri-16-06-2017, 22:15 PM
Last Post: Fred
  Fumaderm Question ccarr06 3 4,456 Fri-20-05-2016, 11:37 AM
Last Post: Bill



Users browsing this thread: 1 Guest(s)
    About | Contact us | Login | Register | Home | Cookies/GDPR | RSS Syndication | Portal | Types Of Psoriasis | Psoriasis Score | Members Only Boards
    Copyright © 2010 - 2025 Psoriasis Club | All Rights Reserved | Founded May 2010 | Psoriasis Club Is Self Funded Without Sponsors Or Donations | Software by MyBB | Social
Linear Mode
Threaded Mode