LDN low dose naltrexone diary (with pics) by pieman...

[Cristina]

Oh Tweets, that looks so painful. 

I really hope the LDN works - I've got my fingers crossed for you. 







P.S   You should have emptied the waste paper bin before having your pic taken. 

[Pieman]

  thankx for that cristina

i shall tick off mrs pie for not being more domesticated
i was too busy tucking me pubes in my boxers to notice....

[Joan Jekyll]

I agree with everyone else - you are brave to post your pictures on here- and whilst people have commented about your sense of humour ( which is brill) you are living proof that this manky condition does not take it away - only if you let it.
Also by posting these pictures it highlights how much support you receive from this place, just like when people post very personal written things , that they may not say in real life. The trust and sense of freindship on here is what makes this forum work so well.
You are married and have a child - these pics will probably help the younger members to understand that even covered with P you can have relationship, keep your sense of humour and enjoy life.  Well Done Pieman
Joan

[Pieman]

i agree there joan, the people on here make this place what it is, great

Previous Treatments: Over last 10 years:

Topicals ongoing (limited if any effect)

TL01 light treatment with short contact dithro cream X 4 full couses (first session had 99.9% Clearance, lasted about 2 months) others had diminishing clearance %.

MTX x 2 couses ( 1st course worked great, 2nd not at all)

Fumaderm (fae) x 1 course, cleared scalp/facial P, but nothing else.

Acitretin x 1 couse.  Stopped after 2 months when my hair decided to fall out!

Cyclo - I have a form of kidney disease which excludes me taking this.

Enbrel - I have been approved for this, but have opted to put this on the backburner due to swine flu /immunosuppressed etc...this is my next option after LDN. Good decision in retrospect, as my daughter was prescribed tamiflu last week!

Ldn - personal choice, after research on pho and other sites on how it helps regulate the immune system in many diseases.  NHS prescibers are reluctant to prescribe 'off licence' because of no clinical trials/efficacy/long term side effect info , hard credible published evidence that it helps P/PSA etc.  So had to go private...in a works healthplan...so hoping to recover some cost...

I must say that my treatment on the NHS over the years has/is still superb, albeit the refusal to prescribe ldn on the nhs, I fully understand and respect their reasons not to.

For the lowdown on Ldn see:

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Also, best wishes to the other pho LDN P Pioneers below (fingers X'd for them) see this thread:
(stewart_h,ash2001,jeni001,patch182,deedee5356,gary1967)
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pie

[yorkie]

Wishing you a full recovery Mate  , You're a Top Bloke and this site is a better place with you posting on it.
 

Yorkie

[Joan Jekyll]

Wishing you a full recovery Mate  , You're a Top Bloke and this site is a better place with you posting on it.
 

Yorkie

I second that - Pieman is the male equivilent of Ria - always upbeat and happy, despite everything

[Nicknackwack]

Yup deffo tick the Missus off for not keeping up with the household chores   Wimmin  

Gotta admit that I'm surprised you let your p get so extensive chum ~ ticking off from me for that   Surprised your not erythrodermic. Phew !

One thing that seems to be missing off your list though pie is PUVA. My list is just about the same as yours and I did the same with Enbrel, but for other reasons. I was'nt offered LDN but reverted back to PUVA. Have you ever considered it ?

And just on a technical note (rattling on    ), LDN is'nt approved by NICE (or the FDA for that matter) but then again nor is Fumaderm (FAE's) which you and I have both had. Am curious to ask if you tried getting LDN via the NHS ?

Chin up chin chin !

Nick 

[Pieman]

hi peeps, thanks for the kind replies..you will make me blush (yeah right!) as if....

Nick -thanks for the tick off, i'll call you dad from now on
don't know much about puva m8 to be honest, it's something i'll discuss on my next derm visit in november.
always been pointed at tl01, derm not really discussed puva...i'll consider this though, thanks.

not done much with my skin apart from deflake and moisturise since last tl01 in jan 09...
my enbrel approval since then took a knock back due to mantoux TB test coming back positive
re-tested and was a false positive apparently...

pie

[Pieman]

ok, down to the nitty gritty:

LDN treatment regime:

1mg/1ml liquid ldn per day at night before bed (tastes of cherry) for 1 month
phone consultation with doc then if no result
up dose on a two weekly basis upto a max of 3.5mg potentially
see consultant 3 months to review.

It has been stated on related LDN post that ldn is a slow burner and takes time to work
also some people cannot tolerate ldn at the higher doses. Also that
LDN works at lower doses for some people, so more is not necessarily better...
so got to suck it and see (xcuse the pun)...what's best for the individual.

The doc at the essential health clinic indicated the following should happen for P clearance:
1) scaling should reduce and stop
2) P patches inflamation will decrease to flatten the patches down
3) Skin will then given time return to normal colour.

pie

[Cristina]

Yup deffo tick the Missus off for not keeping up with the household chores   Wimmin  

Gotta admit that I'm surprised you let your p get so extensive chum ~ ticking off from me for that   Surprised your not erythrodermic. Phew !

One thing that seems to be missing off your list though pie is PUVA. My list is just about the same as yours and I did the same with Enbrel, but for other reasons. I was'nt offered LDN but reverted back to PUVA. Have you ever considered it ?

And just on a technical note (rattling on    ), LDN is'nt approved by NICE (or the FDA for that matter) but then again nor is Fumaderm (FAE's) which you and I have both had. Am curious to ask if you tried getting LDN via the NHS ?

Chin up chin chin !

Nick 

That's a bit unfair, Nick.  People don't 'let' their P get extensive - it can just happen sometimes.

I've had a couple of occasions when my P has been bad - not as extensive as Piemans - but pretty bad, nevertheless.  I was Erythrodermic once so I had to get treatment (my skin was burning but I had the cold shivers and felt unwell).

But another time when my skin was bad (but not Erythrodermic) I simply got so depressed that I gave up for a while. I watched as the damn P crept over my body but I just couldn't be bothered doing anything about it.  I couldn't be bothered getting treatment, I couldn't even be bothered to moisturise to make it more comfortable, because that meant I had to touch my skin and I didn't want to. I just didn't want to think about my skin or psoriasis - I was tired and weary of it all. This went on for quite a while - I was in pain both mentally and physically - but  finally I realised I had to do something about it and went to the doctor.

I'm sure there are people who have extensive psoriasis and may try one treatment after another without much (if any) success.  They must become so despondent - let's face it, it's enough to try the patience of a saint.

Tweets - aka Tweety Pie - aka Pieman   has a great sense of humour but I'm sure he has his bad moments, too.  So don't be too hard on those who have an extensive coverage of P (otherwise I'll tell everyone to call you Dad).