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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
#131
Sun-25-10-2015, 09:38 AM
England, Ireland, Wales and Germany, so maybe Holland is my centre of gravity? But is crankiness really a Dutch trait? I thought my affliction was more a touch of grizzly bear. My dose of DMF this afternoon (in an ice cube) has caused minimal side effects, which I attribute to regular dosing with cysteine. I have also ordered some doxycycline on line, as I have read that it can be useful against PsA. A loophole in Australia is that you can buy as much pharma grade antibiotic as you like, as long as it is for fish or birds. I am not quite sure yet whether I am a sick mullet or galah. It should come in a few weeks, and if it works I should find out about a week after that.

Sorry if I offended you Princess.

Bill
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Caroline Offline
You must hurry if you ever want to catch a chicken...
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Forum Helper
Posts: 26,518
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
#132
Sun-25-10-2015, 09:52 AM
Well not specifically crankiness Smile is a Dutch characteristic.. We are just very direct in our sayings.
Where a British person would say: "it's raining more than normal", we would say "it rains like hell" without exaggerating. Smile

Great that the ice cube trick, together with the cysteine works. I also bought some cysteine to do a bit of a tryout.

I'm not easy offended, you are lucky for that Tongue . But I do recognise that psoriasis on sensitive or wrong places on your body, e.g. In your face or sometime even in your hair, can mean that you become very shy in meeting with people and psychologically crippling in your social life.

Caroline
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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
#133
Sun-25-10-2015, 11:21 AM
The ice cube was a bit easier, but I still had to chomp it up a little. I thought of putting it in Russian Toffee a while ago, and I think that will be my next experimentation.
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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
#134
Sun-25-10-2015, 11:26 AM
(Sun-25-10-2015, 11:21 AM)Bill Wrote: The ice cube was a bit easier, but I still had to chomp it up a little. I thought of putting it in Russian Toffee a while ago, and I think that will be my next experimentation.

85 I love to read of your experiments .... Toffee sounds good Thumb
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Kat Offline
Take my advice; I don't use it anyway.
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Forum Helper
Posts: 9,829
Threads: 84
Joined: Aug 2014
Gender: Female
Location: GA
Psoriasis Score: 3
Treatment: Clobetasol Topical
#135
Sun-25-10-2015, 19:38 PM
(Sun-25-10-2015, 07:05 AM)Bill Wrote: The more I think about this the sillier it is. I'm a little cranky now as I am nearly seven days without DMF and the PsA is starting to kick in. The arthritis is debilitating to me to the tune of a few hours a day. Basically my spine seizes up and needs to be stretched out a few times a day, which in itself is a slow and painful process. Yet what I feel is nothing compared with what many on this forum are going through.

In contrast the skin trouble is nothing. I could not imagine how a few spots could cause any significant concern, except perhaps with the hours of pointless ogling that might result for a vain teenage princess. Yet a grown man with a couple of tiny spots and maxed on fumaderm first wants to sprinkle more DMF on his breakfast cereal, then wants to go back on mtx, which he copes with better than anyone I have ever heard of.

Maybe I am just very cranky because I am in a fair bit of pain now, but the whole scenario sounds crazy.

Apologies,

Bill

I don't think Bass was complaining, simply keeping us informed of his treatment and thought process.

But if I had to go through what you and others here have to endure with this disease, I'd probably be the cranky one! Maybe I've gotten used to Caroline's directness Smile as I didn't find your post cranky at all, just you voicing your opinion in a direct way.
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Fred Offline
I Wanted To Change the World But Got Up Far Too Late.
Moderator
Posts: 66,958
Threads: 3,888
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#136
Sun-25-10-2015, 20:13 PM
Well as we are all having an input which is good by the way, I'll add what I read from it as I think some may be misunderstanding each other.
  • Baseman wasn't complaining no more than the rest of us about psoriasis. Yes he has very little and doesn't go through what some of us do, but even a little is as annoying for some as a lot is for others.
  • Bill is right the amount of psoriasis Baseman is talking about is minimal and to be honest if I was him I wouldn't be taking anything to get rid of Quote "couple of small pink patches  ( no plaque any where at all ) on one leg." I would just use coconut oil and get on with it. To be considering taking Acitretin, Cyclosporin, Methotrexate, Raw DMF, etc is foolish in my opinion.
  • Caroline Wasn't offended one bit by Bills comment. But she was referring to the way the Dutch are in the way they say things, she was saying that Bill was speaking like a Dutch person and giving his honest and straightforward opinion.

I find it great that we can all share and give our own opinions whilst still respecting each others opinions. I just sometimes feel we have to remember that we all have different characters and come from different parts of the world, so sometimes we may read things a little wrong.

Sorry Baseman this is your thread and I'm feeling like Devil's Advocate now, so I'll shut up.
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bassman Offline Author
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 129
Threads: 3
Joined: Sep 2015
Gender: Male
Location: Oxfordshire
Treatment: fumaderm
#137
Sat-31-10-2015, 11:48 AM (This post was last modified: Sat-31-10-2015, 11:53 AM by bassman.)
Ha !

When you visit the amount of forums i visit, and have visited over the years, and been a moderator on 2 of them (A photographers forum and a Computer forum with 100,000 plus members), and see how silly people get on the internet, hiding behind the safety of their screens, this is a breath of fresh air.

I probably sound like a complainer, but no matter, i take the experience of Bill's words and am not the least offended.

In the great scheme of things, Bill is right on the button, and so is everybody else.

And what's more, the positive results have kicked back in again.  I guess i should have been more patient. Trouble is with this P weirdness, is that you dont know whether you have just a flare up, and that will last how long ? , or whether your P is coming back because your drug is not working as good as it did, and maybe your body has gotten used to this one, etc etc etc.

So now, 99.9% clear again, and i should have had more faith, but i've run out of that over the years, with the disappointments. I havent re-started Cysteine and i'm still on the same maximum dose of Fuma.

I'm back in the game !
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bassman Offline Author
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 129
Threads: 3
Joined: Sep 2015
Gender: Male
Location: Oxfordshire
Treatment: fumaderm
#138
Sat-31-10-2015, 11:56 AM
On a different note, i have " inform me of new replies on subscribed threads " ticked, yet i never receive any notifications
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Fred Offline
I Wanted To Change the World But Got Up Far Too Late.
Moderator
Posts: 66,958
Threads: 3,888
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#139
Sat-31-10-2015, 12:30 PM
(Sat-31-10-2015, 11:56 AM)bassman Wrote: On a different note, i have " inform me of new replies on subscribed threads " ticked, yet i never receive any notifications

Did you get one a few minutes ago probably about a new post in You found a cure for psoriasis ?

Also did you get one for my post here ?

EDIT: The system is saying you did get two emails, so can you check your spam folder if you didn't get them.
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bassman Offline Author
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 129
Threads: 3
Joined: Sep 2015
Gender: Male
Location: Oxfordshire
Treatment: fumaderm
#140
Sat-31-10-2015, 12:40 PM
I cant believe it Fred

I dont get any notifications for ages, then as soon as i mention it, i get 2, in both threads you mention
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