Medications and Biologics

[Kat]

I can't tell you why my Fumaderm is working for me but I can tell you why I love it so much,
Before going on Fumaderm I was on topical,creams of one kind or another I ended up with dermovate which I believe to be the strongest i have used and I still,keep,a,tube beside me for emergencies.... I have suffered skin thinning mainly on my shins where I used to get psoriasis really badly and was constantly putting ointment on, the rest of my body has fared well with no adverse effects. I also keep,a,tube of Dovabet again just in case.
I have used Dovonex which had no effect on my skin whatsoever Dovonex is not a steroid it is a vitamin D derivative, but as I say did nothing for me
I used to have puva treatment which was a psoralen bath before UVA treatment it was great and cleared my skin, but it was an uphill battle and lasted a few months then returned..... When they told me no more phototherapy as I had a lifetimes doses already we had to look to the next step.
For me it was methotrexate which did a great job and cleared my skin. But I couldn't tolerate taking it as it made me feel so unwell,and nauseous. I couldn't face taking them in the end and they moved me onto Fumaderm what a great day that was. Caroline can tell you why it works, me I just know it works great for me
I had stomach/ intestine cramps to begin but now I never get them, I got hot flushes which are not unpleasant, and I still,get a few......I don't know if this helps or not

Yes Jim it helps. I know some of this is covered in other threads. For me it sometimes takes seeing things from a different perspective for me to start understanding.

[Kat]

I wouldn't worry too much about the side effects of biologics - you will properly monitored by your doctor (more so than the average person). I have been on and off them for years and I do not get sick anymore on them then off them.

I would choose the treatment the less restrictive to your daily life.

Sadly I do worry too much about things. Due to some other health issues, I'm not sure biologics would be the best choice if I need to change treatments, but that's a doctor discussion.

I do trust my doctors though (for the most part) and you're right that they'll keep things monitored.

[Caroline]

I see Fred's already replying. Think that will clear up and give information.
Maybe I will add to that later.

Thanks Caroline, I think you understand a lot of the scientific stuff associated with these meds. Admittedly, I don't have that understanding.

Hi Kat,

Certainly I can tell you why I think my treatment works, but instead of that I can better point you to my thread on "Dimethylfumarates and psoriasis" starting at post Dimethylfumarates and Psoriasis. Over there is a quite follow able explanation.

In short.
Psoriasis is an immune disease.
You can do anything to fight the effects on the skin, but basically that don't work as you don't get to the origin. The origin is the immune system.
30-35 years ago, dr. Schweckendieck did a lot of research on dimethylfumarates. He did this because of his knowledge of the human energy system, the energy cycle in our cells.
In the skin cells, the energy cycle is going too fast, so the cells live and die in a to high speed.
Therefore you get all those plaques and so on.
An essential part of the energy cycle of your cells are fumarates. Dr. Schweckendieck found that with people with psoriasis there was a problem with this cycle. He himself had psoriasis also.
He created the ester of Fumaric acid, called dimethyfumarate. This ester has its influence in the energy system, and so to say, more or less repairs this cycle. There is very much medical stuff behind this simple explanation, all kind of chemical reactions take place of course.
The result anyway is that the cells restore there energy cycle, ones temperature raises slightly, and the result of that is again that the problems with your skin, but also problems with psoriatic arthritis, disappear.
Dr. Schweckendieck tried everything on himself, with bare DMF, like Bill does. And it is amazing that he found that this works.
In the history of DMF it even appears that it works for 70-75% of the population of psoriasis sufferers, these are numbers from dr. Kunst who treated a few thousand patients. This while the side effects are quite limited, certainly compared to MTX which is pure poison.
In fact DMF should be one of the first non-biologicals to try (DMF is not a biological), but current medicine is very old fashioned and refuses to look over their borders. Though a recent seminar presented the new protocol and DMF went up quite in the ranks. Dr. Schweckendieck was very neglected because common medical researchers did not believe that such a simple doctor could find something like this.
Currently interest in DMF is very quickly rising as some large pharma found out that it appears to work very well also for MS and Crohn's disease. So a lot of money can be gained.
Fumaderm and Psorinovo are the modern versions of the DMF tablets. They both work quite well. Ask Jim and others.
There is a lot of information available. Your doctors could contact the Dutch patients community to find out more.

Did this answer a bit of your curiousity?
Caroline

[Kat]

I see Fred's already replying. Think that will clear up and give information.
Maybe I will add to that later.

Thanks Caroline, I think you understand a lot of the scientific stuff associated with these meds. Admittedly, I don't have that understanding.

Hi Kat,

Certainly I can tell you why I think my treatment works, but instead of that I can better point you to my thread on "Dimethylfumarates and psoriasis" starting at post Dimethylfumarates and Psoriasis. Over there is a quite follow able explanation.

In short.
Psoriasis is an immune disease.
You can do anything to fight the effects on the skin, but basically that don't work as you don't get to the origin. The origin is the immune system.
30-35 years ago, dr. Schweckendieck did a lot of research on dimethylfumarates. He did this because of his knowledge of the human energy system, the energy cycle in our cells.
In the skin cells, the energy cycle is going too fast, so the cells live and die in a to high speed.
Therefore you get all those plaques and so on.
An essential part of the energy cycle of your cells are fumarates. Dr. Schweckendieck found that with people with psoriasis there was a problem with this cycle. He himself had psoriasis also.
He created the ester of Fumaric acid, called dimethyfumarate. This ester has its influence in the energy system, and so to say, more or less repairs this cycle. There is very much medical stuff behind this simple explanation, all kind of chemical reactions take place of course.
The result anyway is that the cells restore there energy cycle, ones temperature raises slightly, and the result of that is again that the problems with your skin, but also problems with psoriatic arthritis, disappear.
Dr. Schweckendieck tried everything on himself, with bare DMF, like Bill does. And it is amazing that he found that this works.
In the history of DMF it even appears that it works for 70-75% of the population of psoriasis sufferers, these are numbers from dr. Kunst who treated a few thousand patients. This while the side effects are quite limited, certainly compared to MTX which is pure poison.
In fact DMF should be one of the first non-biologicals to try (DMF is not a biological), but current medicine is very old fashioned and refuses to look over their borders. Though a recent seminar presented the new protocol and DMF went up quite in the ranks. Dr. Schweckendieck was very neglected because common medical researchers did not believe that such a simple doctor could find something like this.
Currently interest in DMF is very quickly rising as some large pharma found out that it appears to work very well also for MS and Crohn's disease. So a lot of money can be gained.
Fumaderm and Psorinovo are the modern versions of the DMF tablets. They both work quite well. Ask Jim and others.
There is a lot of information available. Your doctors could contact the Dutch patients community to find out more.

Did this answer a bit of your curiousity?
Caroline

It does indeed Caroline. Thank you for your explanation and thank you for using simple understandable terminology. Maybe I can win the lottery and fly over there for treatment. I don't think I'll ever understand the way insurance and pharmaceutical companies work. Thanks for the info!

[Fred]

Maybe I can win the lottery and fly over there for treatment.

Kat I just want to point out that No Treatment is a cure all and you have said yourself "What works for some may not work for others"

You have to make your own choice, if you read posts from Krissie and some others you will read that Methotrexate is fantastic. And I'm not saying Caroline's, Krissie's, Bill's, Mine, Matari's, Jim's, Yours, or anyone's is the best for you. But you must take in to account of what is available to you (as we all do) and what you think is the best way to go.

We have members on Psoriasis Club who have no insurance, no health care, or maybe no money from all around the world. I'm only saying this to bring some readers down to earth, and remind them that not all treatments are available to them.

It's not about what is available to the world, it's what's available to each person in their part of the world and what suits their pocket.

[Kat]

Maybe I can win the lottery and fly over there for treatment.

Kat I just want to point out that No Treatment is a cure all and you have said yourself "What works for some may not work for others"

You have to make your own choice, if you read posts from Krissie and some others you will read that Methotrexate is fantastic. And I'm not saying Caroline's, Krissie's, Bill's, Mine, Matari's, Jim's, Yours, or anyone's is the best for you. But you must take in to account of what is available to you (as we all do) and what you think is the best way to go.

We have members on Psoriasis Club who have no insurance, no health care, or maybe no money from all around the world. I'm only saying this to bring some readers down to earth, and remind them that not all treatments are available to them.

It's not about what is available to the world, it's what's available to each person in their part of the world and what suits their pocket.

I totally agree Fred. My remark about flying over was more just a humorous statement much like winning the lottery, but also acknowledging that although not available here, DMF seems to work well for some people. I DO wish all treatments that help were available to each of us, but I'm not making any judgment call on what I think would be best for me. I'll certainly keep you all informed at to what ends up being what works for me.

[Fred]

I totally agree Fred. My remark about flying over was more just a humorous statement

Yes sorry I was probably a bit over the top with my comment, but I hate the thought of people out there reading in some countries thinking "It's ok for them, I have no health care, no insurance, and no money to get treatment" It must be awful reading what is available to some and they can't get it, I just thought I would bring people back down to earth so to speak.

[Yaseenaltajer]

Hey Kat,

I hope you are at least a step closer to finding the best solution for you.

I would just like to add some personal input regarding my psoriasis journey, since you seemed interested in that.

I had told the guys in my intro that I have had psoriasis and PsA for around 6 years now, and Methotrexate was the only medication that I tried, along with the often needed strong pain killers and anti-inflammatory pills such as Cellebrex.

Methotrexate seemed to help a bit with my lower back pains, but didn't seem to add any valuable input to my nail pitting, my inflamed feet joints, and psoriatic patches around my body. Thankfully, I did not suffer any side effects from Methotrexate (which I'm sure is very rare, thank god), but it just did not seem like it could help me anymore. I couldn't try a different treatment because I was often away for uni and I couldn't maintain a regular visit to a decent doctor.

However, I recently managed to look around and I found myself a decent doctor, who straight away advised me to start on biologicals. So, I got tested for tuberculosis and other diseases (as some of our fellows mentioned earlier) and thankfully was clear of all of them, and I started my first dose of Humira Adalimumab (This is what it's called) exactly 5 days ago.

Not to exaggerate, but around 1 day after I took the dose, to this day, I actually feel like I am constantly on strong painkillers, I no longer feel pain in my feet with every step I take! And I don't have to worry about taking a pain killer before heading out for a jog anymore (for now at least).

Now of course, the swelling and patches are still there, and it could take longer treatment time for me to see any long term improvement of my joints and the psoriatic patches, but I honestly feel good about this and I feel like this biological medicine could actually help give me my life back!

The main downside is that this medicine is quite expensive. Off the shelf, it costs around 7200 dhs per month here in the United Arab Emirates, which is approximately 1960 US$ per month. But hopefully my health insurance can help with that even a little. The other important thing is that I have to be extra careful about getting sick, since as Fred said I am now more susceptible to infections and viruses. I still seem to be in good health so far (fingers crossed)!

I hope this personal insight can help you even a little bit. Take care!

[Kat]

Hey Kat,

I hope you are at least a step closer to finding the best solution for you.

I would just like to add some personal input regarding my psoriasis journey, since you seemed interested in that.

I had told the guys in my intro that I have had psoriasis and PsA for around 6 years now, and Methotrexate was the only medication that I tried, along with the often needed strong pain killers and anti-inflammatory pills such as Cellebrex.

Methotrexate seemed to help a bit with my lower back pains, but didn't seem to add any valuable input to my nail pitting, my inflamed feet joints, and psoriatic patches around my body. Thankfully, I did not suffer any side effects from Methotrexate (which I'm sure is very rare, thank god), but it just did not seem like it could help me anymore. I couldn't try a different treatment because I was often away for uni and I couldn't maintain a regular visit to a decent doctor.

However, I recently managed to look around and I found myself a decent doctor, who straight away advised me to start on biologicals. So, I got tested for tuberculosis and other diseases (as some of our fellows mentioned earlier) and thankfully was clear of all of them, and I started my first dose of Humira Adalimumab (This is what it's called) exactly 5 days ago.

Not to exaggerate, but around 1 day after I took the dose, to this day, I actually feel like I am constantly on strong painkillers, I no longer feel pain in my feet with every step I take! And I don't have to worry about taking a pain killer before heading out for a jog anymore (for now at least).

Now of course, the swelling and patches are still there, and it could take longer treatment time for me to see any long term improvement of my joints and the psoriatic patches, but I honestly feel good about this and I feel like this biological medicine could actually help give me my life back!

The main downside is that this medicine is quite expensive. Off the shelf, it costs around 7200 dhs per month here in the United Arab Emirates, which is approximately 1960 US$ per month. But hopefully my health insurance can help with that even a little. The other important thing is that I have to be extra careful about getting sick, since as Fred said I am now more susceptible to infections and viruses. I still seem to be in good health so far (fingers crossed)!

I hope this personal insight can help you even a little bit. Take care!

Thank you so much for sharing. Yes, I am quite interested in hearing from people who have tried different options and what eventually they feel worked best for them. It really will help me if I have to discuss going to another treatment, not because it worked for someone else, just that I feel more confident if I've heard of people having success, if that makes any sense. I feel more knowledgeable hearing what people think than I do reading the scientific stuff I don't understand, or reading the manufacturers information which is going to be a bit one-sided.

I'm so glad biologics are helping you and hope you continue to see improvements. Again, thank you so much!!