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Fumaderm and hormone injections

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Fumaderm and hormone injections
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
#71
Sun-13-04-2014, 04:36 AM
I hope it stays clear for you Jim, but I thought I'd mention the option of combined therapies as it may allow you to use a lower dosage. I was interested to read Isabelle mentioning that a few Fumaderm patients can go into remission after ceasing the drug. So it may also be possible for some patients to have the disease resolve to an extent that simpler treatments may again become effective.
From what I have read a white cell count below 500 per microlitre leaves you at risk of serious infection, so at least you are above that figure and being carefully monitored.

Cheers,

Bill
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Caroline Offline
You must hurry if you ever want to catch a chicken...
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Posts: 26,513
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
#72
Sun-13-04-2014, 08:34 AM
Yes, what Bill says is correct.
There is a risk on infections with a too low white cell count, which risk depends from person to person.
However it's not the "only" thing, the white cells. Therefore one should have several values measured. All values hang together and that is why a doctor needs to evaluate all values in their relations to each other. E.g. If the white feel count is a bit lower but other values are completely out of line, there is an increased risk. But the white cell count is the most important.

The worst infection you can get is PML (Google for it). It is a brain disease and people with MS, who have used specific medication (won't tell which ones, you know the NSA is listening), are very sensible for it.
The virus that causes it is in about 80% of the population. But is normally suppressed by your immune system.

And Jim, of course you skin is clear Doh with the DMF you are controlling the cause, a problem in your energy system. If the cause is gone/controlled, there cannot be any result.

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
#73
Sun-13-04-2014, 09:53 AM
I wish it were known how DMF works, then it might shed some more light on the disease. Psoriasis certainly feeds on itself and I am sure that sleeper cells remain in the skin for long after plaques disappear. More than anything though I wish I had discovered the brilliant advice on this forum at least a year earlier. Then I would have an ample supply of DMF and no need to deal with a very restrictive bureaucracy.

Cheers,

Bill
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jiml Offline Author
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
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Joined: Oct 2013
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Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#74
Sun-13-04-2014, 10:24 AM
(Sun-13-04-2014, 09:53 AM)Bill Wrote: I wish it were known how DMF works, then it might shed some more light on the disease. Psoriasis certainly feeds on itself and I am sure that sleeper cells remain in the skin for long after plaques disappear. More than anything though I wish I had discovered the brilliant advice on this forum at least a year earlier. Then I would have an ample supply of DMF and no need to deal with a very restrictive bureaucracy.

Cheers,

Bill

I agree with you Bill that this is a great place to come for information and advice about psoriasis and in particular DMF which we are most interested in.
I think Fred has done a great job keeping the forum independent and free from internet nasties.
The amount of information on here is quite astounding, considering the site is run by one man.
There are some great members also,
Caroline is a great information board regarding DMF. She never hesitates to come forward and share her knowledge of the drug.
All of the members are very supportive of each other and a few words on here soon brings a response

I also wish I had found the site much earlier as I no longer feel alone with my psoriasis...
Long may it continue, and again I wish you good success with your treatment, and hope you can secure future supplies
Jim
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Caroline Offline
You must hurry if you ever want to catch a chicken...
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Forum Helper
Posts: 26,513
Threads: 113
Joined: Nov 2011
Gender: Female
Location: In between the tulips
Psoriasis Score: 3
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PQOLS: 4
Treatment: Got back to DMF slow release
#75
Sun-13-04-2014, 10:48 AM
Bill
Read my thread on dmf. It has nothing to do with your skin or sleeper cells.
Cannot say more right now, am away on the bike.
Caroline

The thread is over here Dimethylfumarates and Psoriasis.

I still have to carry on with it, and I will, but it is time consuming as I have to translate it completely.
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Fred Offline
I Wanted To Change the World But Got Up Far Too Late.
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Posts: 66,951
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Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
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Treatment: Bimzelx / Coconut Oil
#76
Sun-13-04-2014, 16:48 PM
(Sun-13-04-2014, 10:24 AM)jiml Wrote: I think Fred has done a great job keeping the forum independent and free from internet nasties.

Sorry to go Off Topic on your thread but just wanted to say thanks for the kind words. Smile

(Sun-13-04-2014, 10:24 AM)jiml Wrote: The amount of information on here is quite astounding, considering the site is run by one man.

I may run it and add a lot of info, but it's the members that keep it going and a big thanks to those that keep updating their threads. Thumb


(Sun-13-04-2014, 10:24 AM)jiml Wrote: Long may it continue.

It's here to stay Jim have no fear of that. Smile

OK niceties done with, back to topic folks. Whip

Ooooh I almost felt a man hug hand shake coming on then.
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jiml Offline Author
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
#77
Sun-01-06-2014, 22:09 PM
Reduction in dose down to three 120mg tablets working well still no sign of psoriasis coming back
Have another blood test Wednesday and if my lymphocytes have not gone down from the last test 0.89 then the dose stays the same if it goes down then will reduce to two 120 mg tablets a day
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jiml Offline Author
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
#78
Sat-14-06-2014, 11:16 AM
Just received my latest blood results, not as good as I had hoped, but my kidney and liver function tests were all normal, but my lymphocyte count was back down to 0.67
I have been told I can continue on my present dose of Fumaderm
However I think I may do a voluntary reduction for a month and see if the dreaded psoriasis reappears
So with effect from today I will be taking just 2 x 120 mg tablets a day for the next month and see if my lymphocytes recover.
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Fred Offline
I Wanted To Change the World But Got Up Far Too Late.
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Posts: 66,951
Threads: 3,888
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#79
Sat-14-06-2014, 14:02 PM
Mmmmm lets see, it's continued going down even though you have reduced the dose. Caroline said "As far as I know critical levels are at 0.2, so you have kind of a buffer." RE: Fumaderm and hormone injections You have gone down to 0.67 and the normal is 1 - 3, so if you look at 0.2 being a bad thing and 1 being normal you are sort of between the two and dropping.

This to me sounds like more of a problem somewhere else and not with the Fumaderma as you have reduced it, I know they said it had nothing to do with your radiotherapy treatment but it could be worth looking into.

The psoriasis hasn't changed so all is good there, and I suppose reducing the dose further won't hurt. (Though I would discuss it with your dermatologist first to keep them in the loop)

Good luck with it Jim whatever you decide to do and thanks for updating this thread as it could help others.
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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
#80
Sun-15-06-2014, 06:10 AM
Hi Jim,

My understanding is that between 0.5 and 1 you have a moderately increased risk of infection, and below 0.5 the risk is high. I would second Fred in looking for other causes for a low count, but I would point out that it could be a combination of causes including the DMF.

Best Wishes,

Bill
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