My Fumaderm Journey

[Fleurgiddy]

Thanks Jim  . Being here is most certainly helping me also - I'm sure it wouldn't be any easier doing it on my own. Having support and a place to share experiences (good and bad) makes a huge difference  .

Funny you should mention your nurses comments - my pharmacist had never heard of it either! My derm nurse warned me of the same mind you, and she also said that many patients had encountered unpleasant remarks from their pharmacists due the cost of the drug being very expensive! I haven't encountered any problems thankfully, and they can't refuse to provide it, but its not fair on those who have. We all already have enough to deal with!!

I've not had my Bloods results yet, will post when I do. Hope yours are all OK 

[jiml]

Thanks Jim  . Being here is most certainly helping me also - I'm sure it wouldn't be any easier doing it on my own. Having support and a place to share experiences (good and bad) makes a huge difference  .

Funny you should mention your nurses comments - my pharmacist had never heard of it either! My derm nurse warned me of the same mind you, and she also said that many patients had encountered unpleasant remarks from their pharmacists due the cost of the drug being very expensive! I haven't encountered any problems thankfully, and they can't refuse to provide it, but its not fair on those who have. We all already have enough to deal with!!

I've not had my Bloods results yet, will post when I do. Hope yours are all OK 

The reason they don't know about it is because as yet it is unlicensed and not in their mims bible and they have no idea what it is, but at least my nurse is a bit more aware now

As for the cost I'm guessing it's about the same as acetretin and not at all expensive as drugs go

Always pleased to be here and discuss and make it a little easier to bear there are a few of us on the same treatment now so we can learn from each other hopefully,

[Caroline]

Thanks Jim  . Being here is most certainly helping me also - I'm sure it wouldn't be any easier doing it on my own. Having support and a place to share experiences (good and bad) makes a huge difference  .

Funny you should mention your nurses comments - my pharmacist had never heard of it either! My derm nurse warned me of the same mind you, and she also said that many patients had encountered unpleasant remarks from their pharmacists due the cost of the drug being very expensive! I haven't encountered any problems thankfully, and they can't refuse to provide it, but its not fair on those who have. We all already have enough to deal with!!

I've not had my Bloods results yet, will post when I do. Hope yours are all OK 

The reason they don't know about it is because as yet it is unlicensed and not in their mims bible and they have no idea what it is, but at least my nurse is a bit more aware now

As for the cost I'm guessing it's about the same as acetretin and not at all expensive as drugs go

Always pleased to be here and discuss and make it a little easier to bear there are a few of us on the same treatment now so we can learn from each other hopefully,

And in England it appears to be even worse than over here. over here DMF is mentioned in the guidelines for psoriasis treatments and the leading dermatologists start to find out that it ought to be one of the first treatments to try.

One other thing, it is wonderful to do some exercise when you have psoriasis, really makes you feel well.

[Fleurgiddy]

Good morning  . I am pleased to report no side effects last night or this morning, yey! I drank two glasses of water before going to bed last night, whether that has had an impact only further observation will tell.

Exercise definitely plays a big part of well being Caroline, I agree! I've been through the vicious circle of depression and psoriasis, and how it drains the energy and enthusiasm towards exercise, which adds to the distress of this condition.  Indeed, this is why I am determined to persist with this treatment to escape that circle which still haunts me! 

What is also interesting is how differently dermatologists from other parts of the world aim to treat sufferers for this life long infliction.  I can only speak for the UK, and I wonder if our government funded NHS organization dictates through costing alongside benefits..?

Has this been discussed on this forum before?

[jiml]

Great news Dawn let's hope that extra water is what did the trick for you, as you say only time will tell  

I'm sure when this works for you and life gets back to "normal" it will lift you out of that downward circle . It certainly lifted my spirits and self esteem

I feel we are lucky to have our  NHS ( National Health Service) which although stretched out very thinly, does a great job of free healthcare generally.. But the increasing pressure due to numbers of patients, and funding cuts makes it more difficult to give good care, and they will always try the least expensive option first... It works for some.

There is a protocol which has been used in most countries which goes through first line treatments to fail on
( potions and lotions) before they go to the next stage which is usually oral tablets that are next . Methotrexate, ciclosporine acetretin, etc

If you fail on these that's when you get the option of a biologicals I think

Most other health services are insurance funded but that's another subject that should have another thread to discuss
Why not start a thread in Psoriasis And Psoriatic Arthritis Topics about healthcare funding and treatment around the world

[Caroline]

Good morning  . I am pleased to report no side effects last night or this morning, yey! I drank two glasses of water before going to bed last night, whether that has had an impact only further observation will tell.

Exercise definitely plays a big part of well being Caroline, I agree! I've been through the vicious circle of depression and psoriasis, and how it drains the energy and enthusiasm towards exercise, which adds to the distress of this condition.  Indeed, this is why I am determined to persist with this treatment to escape that circle which still haunts me! 

What is also interesting is how differently dermatologists from other parts of the world aim to treat sufferers for this life long infliction.  I can only speak for the UK, and I wonder if our government funded NHS organization dictates through costing alongside benefits..?

Has this been discussed on this forum before?

Well looks good at the start of the day Dawn.

We did discuss several times the differences in dermatology over the world, but we did never make a conclusion or overview out of it.
Could be nice to start something like that.

Caroline

[Kat]

Hopefully the side effects are subsiding for you now.

Thanks for your updates as it is interesting to follow you on your journey.

[Fleurgiddy]

Hello! It's been a while since I last posted so I'll back track a little. My last post was Friday morning - week 5, day 4. The morning started well but cramps developed later that morning and intermittently through the day, by the evening I endured another unpleasant bout of diarrhea and sickness. It was possibly the worst day so far...

Week 5, day 5 & 6 - both days passed with no side effects at all! A very welcome relief .

Week 5, day 7 - woke during the middle of night with cramps and nausea but ignored them and was able to sleep it off. By the morning, no side effects which continued through the day until quite late in the evening I had a bout of diarrhea. No nausea or sickness though!

Today - I enter week 6, day 1 and increase my dose to 360mg. I now have to start taking the evening dose again, which is making me feel quite nervous. I've not encountered any side effects yet today and have taken 2 doses, and aim to take my third as early as possible. Fingers crossed my body will behave, but I'll be sure to update my journal.

That's all for now. Hope anyone reading this is well  .

[jiml]

Hello! It's been a while since I last posted so I'll back track a little. My last post was Friday morning - week 5, day 4. The morning started well but cramps developed later that morning and intermittently through the day, by the evening I endured another unpleasant bout of diarrhea and sickness. It was possibly the worst day so far...

Week 5, day 5 & 6 - both days passed with no side effects at all! A very welcome relief .

Week 5, day 7 - woke during the middle of night with cramps and nausea but ignored them and was able to sleep it off. By the morning, no side effects which continued through the day until quite late in the evening I had a bout of diarrhea. No nausea or sickness though!

Today - I enter week 6, day 1 and increase my dose to 360mg. I now have to start taking the evening dose again, which is making me feel quite nervous. I've not encountered any side effects yet today and have taken 2 doses, and aim to take my third as early as possible. Fingers crossed my body will behave, but I'll be sure to update my journal.

That's all for now. Hope anyone reading this is well  .

Thanks for the comprehensive updates it's good to hear how you are tolerating the side effects

It will be useful for you to look back on

If you are nervous about increasing the dose, why not leave it until Friday that will give you the weekend to test it , just a suggestion
Good luck great update
Jim

[Caroline]

I am following you on a foot length, Dawn.
Seems that on the average you are doing quite nicely !