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mamagotchaSo my current treatment routine is that when the flakes and itch on the scalp get unbearable, I do a coconut oil deflaking and then medicate with the topical steroids (Taclonex), which makes my head unspeakably oily and nasty for a day, so I try to do this on days I don't need to leave the house.
I can go at least a week, and sometimes two, between these treatments, which is fine with me for now.
I came up with what I think is a pretty good method for the deflaking process. The National Psoriasis Foundation boards are down, so I'm putting this here on my LJ in case others need to figure it out. I have an old bottle with a long pointed applicator lid from a hair-dying kit (but you could use any similar style bottle). I microwave a jar of coconut oil until it's liquid and pourable, and then I put a few tablespoons into the applicator bottle. This way, I can apply the nice warm liquid oil straight onto the itchy spots, and not have it running down my arms and neck like it used to when I was just dipping my fingers into a small bowl of melted oil. (Make sure you save a squirt for any super-dry skin elsewhere on your body!)
After it's marinated for at least an hour (you've GOT to be patient, or it won't soak into the flakes and loosen them), I use a plastic comb with fine teeth to gently run through my hair against the scalp. When I feel a spot of flakes, I gently scrub the teeth around to get it all loose. Notice that I keep saying "gently"? That's because psoriasis tends to get worse on broken skin. You don't want to remove any live, happy skin cells, you just want to knock off the abundant dead-cell flakes.
Then an nice hot shower. This is my normal hair care routine, and I highly recommend it, but I do have to use a bit of shampoo on the days I use the coconut oil, or it would NEVER come out.
Right after I towel-dry my hair, I apply the Taclonex Scalp. I rarely use the regular topical Taclonex on my other body spots, but sometimes if they're getting bad, I'll do it now too (I'm really trying not to use the steroids too often... I want them to be potent if and when I really need them!). Then I have a day of oily hair, and I'll do the regular conditioner shampoo the next day, and I'm good to go for the next week or so.
One thing I've noticed since starting the steroids is about a dozen small spots cropping up (which I suspect are the guttate form of psoriasis), mostly on my legs, which sometimes happens to folks after starting the steroids (I'd link to where I read that, but the NPF board is down). They just look cruddy, but they don't itch very badly and I'm not terribly concerned about them.
I'm also having a devil of a time with arthritis this year. I'd had little flare-ups in the past, just achy and creaky sometimes in the hips, wrists and fingers... but this year it's gotten really bad. I'm trying not to take too much ibuprofen (don't wanna thrash my liver), and I'm wearing wrist warmers almost constantly. Psoriasis can manifest as arthritis due to the inflammation of the joint synovia, but it can be hard to distinguish from the rhumatoid variety. Fortunately, they're treated the same, but if it IS related to the psoriasis, I'm even more interested in trying to treat it.
Haven't heard back from my primary doc re: ordering the handheld UV unit I want (turns out the dermatologist she referred me to, who blew me off after making me fill out a ton of paperwork, couldn't even order it according to BC/BS rules... I forwarded his prescription to her in hopes that SHE could get it ordered). Guess I need to pester her again...
On a hunch, I wondered whether cannabis would be of help... after all, it helps with migraines by relaxing constricted blood vessels, and I thought maybe it also could be an anti-inflammatory for other parts of the body. Turns out I'm not the first one to think of this (check footnotes 45, 46, 47). I found some info on making my own salve, but IL isn't a green state. Not sure if I'll be able to follow through on this, but I wanted to comment on it in case others were searching for info.
In better news, I think some of my hair is growing back! I have little tufts of it showing up along my part line, so I'm pretty happy about that. I'm stretching out the time between dying my hair, and I'm slowly lightening the color (I'm almost to blond now) in hopes of eventually and gracefully re-embracing my gray again (I'd let it grow out gray while pregnant with Linc, but when an ER nurse asked if I was his grandmother... WHILE I was NURSING him... I was back in the arms of Feria again).
Guess that's it for now. Hope this info helps someone else in the same boat!
I can go at least a week, and sometimes two, between these treatments, which is fine with me for now.
I came up with what I think is a pretty good method for the deflaking process. The National Psoriasis Foundation boards are down, so I'm putting this here on my LJ in case others need to figure it out. I have an old bottle with a long pointed applicator lid from a hair-dying kit (but you could use any similar style bottle). I microwave a jar of coconut oil until it's liquid and pourable, and then I put a few tablespoons into the applicator bottle. This way, I can apply the nice warm liquid oil straight onto the itchy spots, and not have it running down my arms and neck like it used to when I was just dipping my fingers into a small bowl of melted oil. (Make sure you save a squirt for any super-dry skin elsewhere on your body!)
After it's marinated for at least an hour (you've GOT to be patient, or it won't soak into the flakes and loosen them), I use a plastic comb with fine teeth to gently run through my hair against the scalp. When I feel a spot of flakes, I gently scrub the teeth around to get it all loose. Notice that I keep saying "gently"? That's because psoriasis tends to get worse on broken skin. You don't want to remove any live, happy skin cells, you just want to knock off the abundant dead-cell flakes.
Then an nice hot shower. This is my normal hair care routine, and I highly recommend it, but I do have to use a bit of shampoo on the days I use the coconut oil, or it would NEVER come out.
Right after I towel-dry my hair, I apply the Taclonex Scalp. I rarely use the regular topical Taclonex on my other body spots, but sometimes if they're getting bad, I'll do it now too (I'm really trying not to use the steroids too often... I want them to be potent if and when I really need them!). Then I have a day of oily hair, and I'll do the regular conditioner shampoo the next day, and I'm good to go for the next week or so.
One thing I've noticed since starting the steroids is about a dozen small spots cropping up (which I suspect are the guttate form of psoriasis), mostly on my legs, which sometimes happens to folks after starting the steroids (I'd link to where I read that, but the NPF board is down). They just look cruddy, but they don't itch very badly and I'm not terribly concerned about them.
I'm also having a devil of a time with arthritis this year. I'd had little flare-ups in the past, just achy and creaky sometimes in the hips, wrists and fingers... but this year it's gotten really bad. I'm trying not to take too much ibuprofen (don't wanna thrash my liver), and I'm wearing wrist warmers almost constantly. Psoriasis can manifest as arthritis due to the inflammation of the joint synovia, but it can be hard to distinguish from the rhumatoid variety. Fortunately, they're treated the same, but if it IS related to the psoriasis, I'm even more interested in trying to treat it.
Haven't heard back from my primary doc re: ordering the handheld UV unit I want (turns out the dermatologist she referred me to, who blew me off after making me fill out a ton of paperwork, couldn't even order it according to BC/BS rules... I forwarded his prescription to her in hopes that SHE could get it ordered). Guess I need to pester her again...
On a hunch, I wondered whether cannabis would be of help... after all, it helps with migraines by relaxing constricted blood vessels, and I thought maybe it also could be an anti-inflammatory for other parts of the body. Turns out I'm not the first one to think of this (check footnotes 45, 46, 47). I found some info on making my own salve, but IL isn't a green state. Not sure if I'll be able to follow through on this, but I wanted to comment on it in case others were searching for info.
In better news, I think some of my hair is growing back! I have little tufts of it showing up along my part line, so I'm pretty happy about that. I'm stretching out the time between dying my hair, and I'm slowly lightening the color (I'm almost to blond now) in hopes of eventually and gracefully re-embracing my gray again (I'd let it grow out gray while pregnant with Linc, but when an ER nurse asked if I was his grandmother... WHILE I was NURSING him... I was back in the arms of Feria again).
Guess that's it for now. Hope this info helps someone else in the same boat!
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(no subject)
Date: 2011-01-19 07:57 pm (UTC)xoxo,
Monica
(no subject)
Date: 2011-01-19 10:20 pm (UTC)1. The symptoms of inflammation from autoimmune food allergies are indistinguishable, by description, from the symptoms of rheumatoid arthritis.
2. Ibuprofen and other NSAIDs contribute directly to the erosion of the stomach and small intestinal lining, which is a precursor to developing autoimmune food allergies. It helps immediately because it's anti-inflammatory, but it prolongs the issue if the issue is food allergies.
I know that you aren't very happy with your insurance coverage, but I cannot recommend strongly enough that you have an expanded (90+ foods) celiac blood panel done. I can recommend labs that do it at significantly reduced cost if your insurance doesn't cover it. The point is not to diagnose celiac disease. The point is to determine if you are allergic to the things you eat the most, which, as it turns out, is a strong indicator that you have issues with your stomach/intestinal lining. I know you looked at leaky gut before as a possible problem, but I wasn't sure how much your doctors knew or if they offered you the blood allergy panel.
Cannabis can help you feel better, but it will only treat the symptoms.
I'm glad some things are going better for you and you've found a routine that helps!
(no subject)
Date: 2011-01-20 07:59 pm (UTC)I think what I need to do is (argh) change primary docs again. I've been trying to find an integrative medicine practitioner on the BC/BS rolls, and this gal was the closest thing I could find. And she couldn't tell the difference between psoriasis and eczema (even *I* could figure THAT out)... and she's turned out to be a vitamin pusher.
She might go for the celiac panel, though. She seems to be a bit blown away by my ability to research and advocate for myself, so she might do it just to get me out of her office and quit scaring the receptionist.
I had such an awesome doc in Kansas City. I'm truly stunned that I cannot find one here in Chicago... I know there must be someone here, I'm just not asking the right folks or typing in the right search criteria. Argh again.
Thanks for the feedback, it's appreciated. Hope your experiments are providing satisfactory information, too!
(no subject)
Date: 2011-01-20 09:53 pm (UTC)If you need info about the lab that did my celiac panel, ping me via email. It cost me about $150 out of pocket; they'll bill my insurance and if the insurance company doesn't pay I'm not responsible for the balance (about $1350). If they do pay I'll get a refund. This is standard on their intake forms, so it'd be a matter of your doc ordering the lab kit and paperwork. The billing is done by the lab.
(no subject)
Date: 2011-01-21 02:26 am (UTC)I'd even foot the $150.
Something to think about....
(no subject)
Date: 2011-01-23 04:12 pm (UTC)Thanks for your encouragement. I truly appreciate it, and am so glad to hear that things are moving in a positive direction for you!
(no subject)
Date: 2011-01-24 05:39 pm (UTC)You will find some naturopaths who refuse to do any lab work at all or who require your conventional doctor to order the lab work for you. I had forgotten about your needle phobia, but considering how challenging you've found it to radically alter your diet and eating habits at home, I think that the short term squick of a couple of blood draws (I hate it too, and get nauseous and panicky) would do a lot to bolster your own confidence and resolve, and also goad your family into supporting your efforts.
We are waiting on the results of the allergen panel, which are delayed because I got the draw done over the holidays. However, here is the paper that describes the allergen panel I just took (I included the vegetable, inhalant, and environemntal allergen add-ons). At the end it has a web site and phone number where you can find out about ordering the test. They offer a separate Celiac panel that just tests for wheat and gluten allergies, but I think especially if you'd rather not do things over and over again, the single draw with all of these results is far more useful.
They also offer an intestinal permeability test. It is hard on the system but a potential alternative if you just want to know whether you are really dealing with leaky gut.
I'm going to post exactly what I'm doing food-wise, and what some of my coping mechanisms and references have been, and you can take a look at it and see if you think you can do it. There's nothing I'm doing or taking that requires a prescription, so you could tackle it on your own and look for empirical results. The challenge, of course, is that you might have allergens that I don't, and also that doing it halfway is largely pointless (if intestinal permeability is the problem and you are seeking a cure).
Супер блог!
Date: 2011-06-03 06:07 pm (UTC)(no subject)
Date: 2012-02-18 12:48 pm (UTC)