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Psoriasis Club › HealthHealth Boards › Prescribed Treatments For Psoriasis v
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Fumaderm advice wanted

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Fumaderm advice wanted
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
#51
Sat-25-04-2015, 13:35 PM
(Sat-25-04-2015, 13:19 PM)Cathy1815 Wrote: Week 5 almost done. Suffered with diarrhoea this week but starting to settle now.
Skin starting to show signs of improvement on arms and legs which is great. Hoping to be able to get on the 3 tablets tomorrow. Seems to be side effects get worse after increasing dosage by the middle of the week and then subside. Had no option on Wed night but to take tablet with coke (as in the drink version) and really suffered next day.
Still determined to stay on it though.

Well done Cathy sticking with it week 5 and signs of improvement .... it's not always easy ... I'm so glad you are seeing improvement in your skin, it's encouraging news... good luck when you step up the dose to three  Thumb at least you know what to expect ... Hopefully your body will be getting used to the substance and stop reacting so violently .
I bet you don't take them with Coke again  Big Grin whatever version
Looking forward to the summer for you  Thumb
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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
#52
Sun-26-04-2015, 02:58 AM
Dont give up on the topical treatment either. I have been taking DMF since November 2012 but have not used topicals concurrently. However I did start using them last week and have been surprised by the efficacy.

Cheers,

Bill
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Cathy1815 Offline
Member


Posts: 15
Threads: 2
Joined: Mar 2015
Gender: Female
Location: Stockport
Treatment: Fumaderm
#53
Sun-26-04-2015, 08:12 AM
G Smile Thanks Jim.
Did you go up to 6 tablets and then reduce to 4? How long did you stay on 6 for?
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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
#54
Sun-26-04-2015, 08:28 AM
Hi Cathy I really can't remember it was a long time ago and I wasn't on a forum then and didn't keep a record. But I think I was on six 120mg tablets for at least six months before they started reducing the dose.
You may not need to get to the high dose if it starts to work on a lower dose they may hold you on that dose for several months until you clear and then reduce slightly
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Caroline Offline
You must hurry if you ever want to catch a chicken...
*
Forum Helper
Posts: 26,597
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
#55
Sun-26-04-2015, 09:37 AM
Rule of thumb.
You stay as long on the "steady phase" as your build up phase has been. After that you can try to reduce slowly.
Reduce until psoriasis appears again, than go back to the step before.

It's easy as eating cake. Wink
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Kato Offline Author
Member


Posts: 23
Threads: 3
Joined: Feb 2015
Gender: Female
Location: London
Treatment: Fumaderm & steroid creams
#56
Wed-06-05-2015, 13:32 PM
Hi everyone!

Hope you're all doing well! Big Grin

Sorry it's been a while since my last post...its been a pretty busy few weeks but I'm looking for some Fumaderm advice....

I'be been continuing with my 720mg dose and saw my consultant on Tuesday (who said I can start to reduce my dose now woop!)! However I had new bloods taken at the same time and although my lymphocytes are stable at 0.6, my total WBC has dropped from 4.5 to 1.7! My consultant called me and sounded a bit concerned, asking if I'd been unwell (which I haven't).

I'm getting them repeated right now but am off to Japan on Monday for a week and a half and I'm panicking I won't get my results before then.

How low is 1.7? Do you think this is risky?

Thanks heaps
Kath
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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
#57
Wed-06-05-2015, 13:40 PM (This post was last modified: Wed-06-05-2015, 13:41 PM by jiml.)
(Wed-06-05-2015, 13:32 PM)Kato Wrote: Hi everyone!

Hope you're all doing well!  Big Grin

Sorry it's been a while since my last post...its been a pretty busy few weeks but I'm looking for some Fumaderm advice....

I'be been continuing with my 720mg dose and saw my consultant on Tuesday (who said I can start to reduce my dose now woop!)! However I had new bloods taken at the same time and although my lymphocytes are stable at 0.6, my total WBC has dropped from 4.5 to 1.7! My consultant called me and sounded a bit concerned, asking if I'd been unwell (which I haven't).

I'm getting them repeated right now but am off to Japan on Monday for a week and a half and I'm panicking I won't get my results before then.

How low is 1.7? Do you think this is risky?

Thanks heaps
Kath

You will get the results before then they usually gave them the day after the test just phone and ask if they are coming back up great
If stable I would reduce for a while to see if that's the cause
How long are you in Japan for ?
Normal wbc is between 4 and 10 so yours is low
Lymphocytes should be between 1 and 3 so yours are low
I have had low counts before and a reduction of the tablets restore the levels to normal
Stay calm at least the doctors are aware and will modify your dose
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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
#58
Wed-06-05-2015, 14:06 PM
At those levels I would not be taking any DMF until the cell count improved. Your life is more important than a clear skin. It may be either the total dose and/or the dose frequency which suppresses the white cell count. I have been able to maintain efficacy whilst minimising the WBC suppression by taking larger doses less frequently, and a lesser amount of DMF overall.

Cheers,

Bill
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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
#59
Wed-06-05-2015, 14:09 PM (This post was last modified: Wed-06-05-2015, 14:10 PM by jiml.)
I have read a bit more and they may half your dose to see what happens but they may just cease it until you come back to be safe. It will depend on the new blood results

EDIT
Just noticed Bills post and agree with him Thumb
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Caroline Offline
You must hurry if you ever want to catch a chicken...
*
Forum Helper
Posts: 26,597
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
#60
Wed-06-05-2015, 14:25 PM
(Wed-06-05-2015, 14:06 PM)Bill Wrote: At those levels I would not be taking any DMF until the cell count improved. Your life is more important than a clear skin. It may be either the total dose and/or the dose frequency which suppresses the white cell count. I have been able to maintain efficacy whilst minimising the WBC suppression by taking larger doses less frequently, and a lesser amount of DMF overall.

Cheers,

Bill

Bill,
I think for some reason it greatly depends on how the measures are done.
E.g. my Lymphocount is somewhere 0.6, but the range over here also is lower (have to check in my data at home).
So I have reduced counts, but are still close to the range.

So I think the count over here is slightly different from other places in the world.
Why ?? I would not know. It should be the same everywhere in the world, but it is not.

EDIT: I don't agree with Bill... Tongue
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