Autoimmune?

Starting this thread to see what people have to say about autoimmune disorders.

I suffer from an extremely severe form of psoriasis. It started manifesting when I was about ten, and has been an active and depressingly impactful on my existence. Normally you'll see people with a little psoriasis on their scalp or arm, and it's just an unsightly annoyance. For me, when I'm not taking powerful drugs that suppress my immune system, it's utterly debilitating. It covers 90% of my skin, makes it impossible to move, and is just generally intensely painful. Some doctors have been quoted as suggesting that the effects of this type of severe psoriasis can be compared to living with cancer, in how it affects your ability to form daily routines and interact with others. It's also a disease that makes socializing very difficult, so you end up not having any sort of social community to support you. I could go on, but basically there's a whole host of gnarly secondary effects that present, some of which are almost as bad as the disease itself.

I'm lucky in that my current medication seems to be working, but I am also constantly aware that the drugs I am using to fight my disease are potentially very harmful in their own way. And the stress of having this disease doesn't go away simply because the physical effects are being managed. It's a genetic condition, so it will always be with me, and I'm constantly struck by the fear that the meds could stop working (some already have), leaving me with the disease all over again (and the flares you get when you come off medications can be life-threatening).

This sort of disease is incredibly life-altering, and is often invisible to some degree, making it very hard for other people to connect and realize that you're honestly ill. I figure this might be a good place for anyone who wants to, to share their stories, suggestions, whatever. Sometimes just being open about what you're facing can be a lot of help when you're dealing with this sort of condition.

Psoriasis!! Well then I feel for ya pain, I have the same condition.

Mine started in my late 20's as patchs, and grew slowly to a maximum of about 60% of the body with full continuous coverage, until about a year ago where I've been able to reduce it right down through various lifestyle changes. When active its at its worst at around 9pm when natural histamine levels increase (probably as a result of digestion)!? Previously it was like being on fire... I'd literally scratch down to blood most nights.
:S

When it got up to going past 60% (with full coverage) I had to hassle the Doc, who ran me on a course of Prednisone to give my heart a break - its like being literally swallowed by pain when your body starts to gets entirely covered. It was an amazing feeling, light as a feather, and so open minded... very relaxing feeling, which sucked, because it highlites how big an impact it was/is the rest of the time.

It came back of course as I didn't want to stay on those meds. The biggest thing for me was finding out I was sensitive to the family of plants known as solanaceae, or more commonly the nightshades. This includes tomato, potato and capsicum, and I avoid them like the plague. I was (like most people) eating a lot of them, its in lots of processed foods in various ways too, but when I fully cut them out (and reduced my bodyfat right down to avoid leaking from bioaccumulation of prior consumption) mine went completely away for about 3 weeks on its own. It did start to come back and I still have it unfortunately, but it was an important clue for me.

These days I tackle it on 2 fronts; avoiding those foods religiously, and other foods which might aggravate an inflammatory response in the gut, and secondly making sure I am very regular with bowel movements. Stuff downstairs takes a lot longer then most of us realize to pass through, and having it sitting there is likely causing a lot of irritation and inflammation IMO. When it flares up for me it usually coincides with less then regular bowel movements, so there seems a direct correlation.

So basically I measure my progress in managing my psoriasis by how healthy my diet and digestive system is. So for me my psoriasis is an effect of a sensitivity in the gut, which is the cause that generates a particularly serious inflammatory response - being that autoimmune condition. We are all different though so I dont know if others have the same or similar triggers.

So now I'm at about 20-30% at full coverage of the legs only, which is annoying but not so 'loud' that I cannot manage it.

The only medication I take is half or quarter of a weak prescription pain killer, which is a blend of Doxylamine, Codeine and APAP in relatively tiny amounts. That is just to help me get to sleep (since its at its worst at that time) but it also seems to help quieten it down the next day (perhaps because I get a good sleep). I try to reduce my doses whenever I can to develop my own capacity to handle it, rather then increasing the dose and using it as a crutch. I don't want to become desensitized to it if its one of the things which might help me if it gets worse.

You are right about the secondary impacts. I read online sufferers are more likely to abuse drugs and also suffer from severe depression as a result of the stress and pain. I really hope you can find something which reduces your symptoms!!!

:pinch:

I'm a bit funny though, as I view it was a result of my immersion into meditation practises, being that its a result of increasing my sensitivity to my own body through focused introspection - because it started a few years after that, but I doubt that is actually true
:blink:
... and in that way I view it as a basis for things like Nauli Yoga, warning freaky stomach exercise video is freaky;

https://www.youtube.com/watch?v=yHtNn0jKk0w

PS; I also did a hair analysis, which showed what other foods I might have a sensitivity with, but I think most of them vary depending on levels of exposure as I can more easily get away with cheating on the results of that. It's the nightshades which have it in for me
:lol:

Thank you Adder and Locksley. I've been dealing with Psoriasis type conditions for about 15 years now on my scalp, face, legs and chest mainly. I was on topical steroids for several years but the side effects of those gradually become more serious than the condition itself so I came off them.
I managed without them using various combinations of moisturisers (Aveeno mainly) and avoiding hot baths and showers which really seemed to make it flare. Then something a bit weird happened.
I was going on a stag weekend that I knew was going to be very 'boozy' and took some Milk Thistle extract - it's meant to help with hangovers. It did seem to help a bit with that but what was much more exciting was that within 24 hours my patches were looking less angry than they had done in years.
I still take milk thistle as a dietary supplement today (4 years later) and while I still get patches for no apparent reason they are much smaller and much less itchy and raw than they were before.
I'm very wary of getting anyone's hopes up as the causes of Psoriasis are so varied and complex but on the off chance milk thistle might help you too, I had to mention it! I came across it completely by accident and it has helped (with my relatively minor condition) more than anything else and I hope it might at least take the edge off yours too.
All the best with it and stay strong!

I have been occasionally having that also, its a combo of a few things but has 12.3 grams of Milk Thistle in each capsule;
http://thompsonsnutrition.com.au/products/herbals/liver-cleanse-capsules/
I might step it up now and see if it helps!! Thanks for the pointer

That's really interesting! I hadn't heard of milk thistle being used as a treatment before, I'll have to look into it more. Thanks for mentioning.

These days my flare is mostly under control, but I've been forced to opt for the gnarly drugs: Enbrel, Humira, Stelara, Otezla, and now Cosentyx. UGH. Still, the decision seems to be standing for itself. I figured that the risk of super-terrifying side effects was worth being able to live life free of the effects of my disease. Even if it's still active inside my body and just suppressed, hey... I'm able to feel more like a normal, healthy 20-something. I tried topical treatments, and even topical steroids, but the coverage area was way too large so the amount needed would have ended up having a systemic impact... and they stopped working pretty quickly anyway - and coming off of steroids makes psoriasis flare like nothing else, it can even morph into different types of psoriasis than what you originally had! Super lame disease man.

I definitely remember scratching myself bloody many nights too Adder - I agree, definitely felt like being on fire, except that the nerve endings never died. Few people know the terrible pleasure of scratching off their own skin. :sick:

I have known about the nightshade family for a long time, but after I got on the meds I stopped worrying about it as much. Still... I think I might cut them out of my diet anyway. Psoriasis can adapt to a lot of these medications over time, so I should probably do whatever I can to get as healthy as I can in preparation for that eventuality. Thanks for the reminder!

I also second the point of maintaining a healthy gut! There's a wealth of material out there that suggests that the gut has a huge part to play in psoriasis and other autoimmune disorders, so keep yer gut flora happy! I suggest, apart from just eating healthy and keeping sugars to a minimum, taking probiotic supplements daily, and eating lots of cultured foods, like kefir and kombucha. Kefir is especially important, for the following reason:

"…but they contain different types of beneficial bacteria. Yogurt contains transient beneficial bacteria that keep the digestive system clean and provide food for the friendly bacteria that reside there. But kefir can actually colonize the intestinal tract, a feat that yogurt cannot match.

Kefir contains several major strains of friendly bacteria not commonly found in yogurt, Lactobacillus Caucasus, Leuconostoc, Acetobacter species, and Streptococcus species.

It also contains beneficial yeasts, such as Saccharomyces kefir and Torula kefir, which dominate, control and eliminate destructive pathogenic yeasts in the body. They do so by penetrating the mucosal lining where unhealthy yeast and bacteria reside, forming a virtual SWAT team that housecleans and strengthens the intestines. Hence, the body becomes more efficient in resisting such pathogens as E. coli and intestinal parasites."

This applies to kombucha as well. Both can help not only cleanse the gut, but actively work to rehabilitate its inhabitants. While the overall health benefits have not been studied and confirmed by the larger medical community, the intrinsic benefits of using probiotics is well known, so even if someone had doubts about 'natural remedies' these shouldn't pose them any qualms. Basically everyone should have a daily dose of probiotics daily, regardless of larger health issues already present. :whistle:

Locksley wrote: Basically everyone should have a daily dose of probiotics daily, regardless of larger health issues already present. :whistle:

Any links to the efficacy of probiotics? I've had several alternative health professionals suggest them for various health issues (IBS and anxiety), but the one question none of the articles I've read can answer the basic question of "how do probiotics survive the trip through the stomach acid into the gut?"

I'm having a go with Polypodium leucotomos extract (PLE). From a sales pitch it "has been shown in vitro to inhibit the production of T- helper 1 cytokines; IL-12, IFN-?, TNF-α, IL-6 and increase the production of Th 2 cytokines; IL-10 and TGF-β.".

http://cid.oxfordjournals.org/content/46/Supplement_2/S96.full
http://www.hindawi.com/journals/isrn/2013/481651/
http://www.ncbi.nlm.nih.gov/pubmed/16635227

Those are just what I could pull out of my hat at short notice, but there's a huge amount of evidence out there for the health benefits of probiotics.

Adder wrote: I'm having a go with Polypodium leucotomos extract (PLE). From a sales pitch it "has been shown in vitro to inhibit the production of T- helper 1 cytokines; IL-12, IFN-?, TNF-α, IL-6 and increase the production of Th 2 cytokines; IL-10 and TGF-β.".

Well that didn't go so well, and I've stopped.

Now just focusing on Vitamin D supplementation. Twice daily of 2000Ul. I started with once daily of 3000 but it impacted my arterial stiffness sufficiently to notice it... so now I've elected that lower dose but more often. Seems to help a bit but its early days, as I'm pretty confident I do not get enough Vitamin D.

Thanks for the update Adder - I really hope the Vitamin D helps