Psoriasis Club

Hi,
I just registered here. I have had psoriasis for 10 years and got psoriatic arthritis in my first year. In fact, the psoriasis hit the same month I hit menopause, and the arthritis 4 months later. I had some plaque, but mainly my psoriasis type is guttate.

I did feel that when I lost my periods, I gained this disease. It was like I had a way to release my own toxins until then.

For 4 years I tried to fight off the psoriasis with a naturopath's help. I did see some clearing, but the arthritis was awful and nearly crippling. I had it in most of my large joints, but my fingers and toes was worst.

At that point, I finally went to a teaching college where they had tested the biologics. My new derm got me on Enbrel. The following day, I did not need my naproxen pain pills. Within several weeks I noticed a huge difference in my skin. But 4 months later, the skin problems came back. Luckily, 5 years later, I am still in remission from the arthritis.

In spring of 2013, my specialists decided my skin was so bad that I should be put on methotrexate. But I also have a liver condition, so I wasn't happy about methotrexate. I visited my naturopath and she suggested I try LDN or low dose naltrexone. The other doctors were going to start the methotrexate in the fall, so I felt like I had a few months to try the LDN.

Long story short, I responded very well on LDN. I've had one PASI score of 0 and another of 6...but my skin is actually the same (just different doctors). I have pictures and will gladly share them. I have been 90% clear for more than a year. I take 4 mg naltrexone each night before bed. I had no side effects. This has been the most wonderful experience. I am still on Enbrel.

Oddly, I tried to search here for LDN, and the search feature wants 4 letter phrases or more. I then searched for naltrexone, and couldn't find that either.

I have been on the Inspire Psoriasis Foundation Forum for years, and I have learned to hate it because of advertising and being steered by the foundation with all their impersonal emails. Also, I am appalled by the people who attack folks for trying alternative therapies.

I hope I can share my good news and find a place where people aren't locked into the medical/pharmaceutical field's dictates. As we all know, there is no therapy that works for all of us and we have to advocate for ourselves and be willing to try different paths.

Personally, I believe we all share symptoms, not always the same cause. But I believe that the liver and proper digestion/absorption is the key to healthy skin.

I'm looking forward to meeting folks here.

Dulane

Hi Dulane and to the forum as you have mentioned in your intro we are a friendly club and like you we hate advertisements and are very proactive against spammers. So you can feel secure here in the knowledge that no one is going to sell you anything..
I'm sure you will find here we are open minded to new ideas, and you may well find some interesting articles on natural treatments and on prescribed treatments,
You will find all members here have psoriasis in various stages and are happy to pass their experience on
We have an off topic section which is more light hearted than the health boards so enjoy your time here and join us in the off topic section if you want to chat about anything or just chuckle at the jokes
thank you for sharing your experience of LDN it's something I hadn't heard of .
I thought naltrexone was to wean people off drugs ......

Good luck
Jim

Dang, I responded to you and wrote near a book before my tablet lost connection with the forum! I will start again, but first I will post some links. Hopefully I won't lose my post again.

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These two below are pretty glitzy and professional, but the owners of the websites have made them pretty and believable for the sake of regular doctors who might actually read them for educational purposes.

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This site also has a Youtube channel with lots of speakers and testimony of users including psoriatcs.

The best thing about LDN is the low toxicity level, but you should not be taking opiates if you use it.

Glad to answer more questions.

Hello Dulane to Psoriasis Club.

Bad luck on getting psoriatic arthritis in your first year of psoriasis, you may be interested in this thread: Psoriasis & hormone changes

I'm a fan of the Bio treatments as they gave me my life back, and I too found Enbrel (etanercept) worked quickly.

Re the 4 letter search, it helps against the system throwing out to many unrelated searches as you need to be more specific.

As Jim said you won't find any advertising on Psoriasis Club, we are self funded and not only free from advertising but there are no sponsors and we don't accept any donations. This makes us the only totaly independent psoriasis forum out there, what you see is what you get. "Just people with psoriasis sharing information and support"

Regarding the impersonal emails, you will get standard ones from the software about new posts or PMs etc if you have subscribed to them. The only other Email is the monthly newsletter which I compose myself that too is only sent out to those that subscribe.

Finally as for people attacking others, that will not be tolerated on Psoriasis Club. Yes you will get opinions, but if you or anyone feels you are being attacked don't hesitate to shout out or contact me as it's not welcome here.

Regards.

Fred.

OK, I feel better about getting my info out.

Yes Naltrexone was approved many years ago for either stopping OD's or helping opiate addicts stop using. These folks usually get around 200 mg daily in devided doses. (There is research that shows naltrexone and it's cousin naloxone may help with alcohol addictions.)

In the '80's a doctor experimented with it in ultra low doses (almost homeopathic doses) probably with research animals, and discovered he was curing the mice of other things.

He discovered that in very low dose and taken before sleep...that during REM sleep, the brain detects an endorphin deficiency so causes our bodies to secret additional endorphins, which in turn has a beneficial effect on the immune system.

Many folks with auto immune conditions have responded very well on LDN.

My naturopath didn't know if it would help psoriasis, but she had good luck with other AI's so she thought I'd be a good candidate.

It isn't a cure. The effects tend to last a month or so after stopping LDN. It won't help everyone. But neither do the other therapies. It takes about 2-3 months to know for sure if it is helping. It cost me $200 for my naturopath visit and $40 per month for my prescription. Some people buy the naltrexone w/o prescription online and do a liquid titration themselves. You can also crush the tablets, buy capsules and rice flour and a capsule machine.

I was glad to have a prescribing doctor because my specialists were unaware of LDN and would never have OK'd this if my naturopath hadn't moved first. (Sounds like a chess game.)

Interestingly, NOW all my specialists have taken notice because my skin is so much better. I am involved with an 8 year psoriasis 'quality of life' research program and even those folks have started tracking the LDN findings.

If this sounds interesting to you, please do all your research. I did before I started. There is a ton of info out there on the web. On different LDN forums, they list doctors in your area who prescribe. This drug has few side effects and toxicity...but there are serious issues if you aren't careful with it. If you combine it with an opiate, you can have projectile vomiting and a full day of weakness. So you need to do the research.

I hope you can find a doctor you can work with. Neurologists are coming up to speed on LDN. You can print out some research articles and take them to your doctor visit. Even if you have to travel to find a prescribing doctor, most compounding pharmacies will send you your pills in the mail, at least where I live.

Good luck if you try it!

Thanks Fred. It is nice that you have put together a forum that limits spammers and expensive pharmaceutical advertisements. It does seem like you thought all this through carefully and have kept psoriatic's best interests at heart. When people are sick it is doubly easy to get overwhelmed.

Whenever I come to a support forum, I try to research my questions first by using the search feature. But LDN will always have 3 letters. In the future I will use the spelled out word naltrexone if I post about it to avoid confusion.

Thanks for the link regarding hormones.

(Wed-17-09-2014, 20:54 PM)DCrist Wrote: NO LINKS ALLOWEDIt does seem like you thought all this through carefully and have kept psoriatic's best interests at heart.

Yes it has taken a lot of work to get it where it is and still does sometimes, but it's the members that make it.

(Wed-17-09-2014, 20:54 PM)DCrist Wrote: NO LINKS ALLOWEDIn the future I will use the spelled out word naltrexone if I post about it to avoid confusion.

Yes it will help and Google prefer it too.

(Wed-17-09-2014, 20:54 PM)DCrist Wrote: NO LINKS ALLOWEDThanks for the link regarding hormones.

You're welcome.

Welcome Dulane! Thanks for sharing your information. The people here are very respectful of each other and supportive and it's very nice to be on a site where there aren't any spammers.

Hi...

I'm sorry that u fee the pain of psoriatic arthritis & psoriasis. I have them both too. It is definitely a challenge some days to get thru the day. I have often heard that LDN can be helpful for this disease. My next appointment I will start a step down 2 week treatment of pred, then LDN. My doc is very reassuring that I am now in a place where my Hands need to try a bio drug called XIAFLEX it's an injection made from a bacteria in the soil and also found in feces.
I am going to give it a try hoping this bio can straighten out my curled fingers from dupurytrens contracture and severe P. arthritis.

I read a article about a study where a new cell responsible for autoimmune diseases was identified called the "B" cell. The question is why are there more women with autoimmune diseases? As it turns out the "B" cell is only found in autoimmune diseases only attaches the X chromosome . The question why do women seem to have more autoimmune diseases than men. It turns out the male chromosome is X & Y. WOMEN chromosomes X&X.Therefore more B cells attaches twice to women chromosomes which could be why women have more autoimmune diseases.

Good to hear UR skin is clearing and u also have a manageable pain program for Psoriasis & psoriatic arthritis. I have two THR due to Ostero arthritis all my joints have arthritis.

U sound very experienced and have a good idea about what meds are available for psoriasis & PSA. And what help you. I hope that u continue to find remission.

Hi Dulane,

Welcome and I know u will find this forum less judgmental than the other one.
I experienced some of those attacks u speak of on that site.... It was sad and many like u and I have left that site.
In general several new members began to show up and new posts on the inspire site by the same 4-5 individuals began wrangling Psoriasis suffers for clinical trials for the bio drugs. They advertised drugs by their partners as well. It became more of a collection of advertising like one post would literally post, "Free meds for psoriasis,approved by the FDA." And leave all the contacts around the country to contacts to enter the bio drug trials. However the FDA approved part of the drugs was for a totally different disease, not psoriasis . Unless u do some research they r very misleading. Then another post , "Why are you all still suffering blank name of Pham company has "Cured" my psoriasis since 1970. It was a crazy way to get attention and the site protected these posters.

now I have found this site and find it very informative and helpful and friendly.You will too! Here there is no one wrangling anyone . Just information plane old fashioned information.

As long as there is breath their is life. " Life is a Gift" .