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Psoriasis Blog – Guest Post

Guest Post

A nice lady from across the pond called Katie Brind’Amour has been in touch and asked if I would print an article in this blog about her psoriasis-related work. I am not one to deny my – ooh, tens of readers any avenue to psoriasis treatment and and so who am I to say “no”? I do not know Katie and cannot personally endorse her work, but I share the information because … well, because she asked nicely. Here it is (with apologies for the American spellings :)):

Making a Move on Your Psoriasis—at Home

Many individuals with psoriasis are no strangers to home remedies or alternative therapies. Others are so desperate for symptom relief that they would bathe in a tub of mashed potatoes and tapioca pudding if someone told them it could clear psoriatic patches of skin. But which at-home treatments really have some evidence behind them?

Slather on Some Homey Goodness

Perhaps one of the most familiar methods for self-treatment of psoriasis is a topical cream or ointment. Instead of searching for the best dye-free, scent-free lotion since sliced bread, opt for a new topical option: oils. To be sure that none of your new home-based therapies for psoriasis interfere with other medications or ointments you may be using, check with your healthcare provider before making changes.

Fish oil (from over-the-counter supplement capsules or bottles) applied directly to the skin may help reduce inflammation and itching for some people. Olive oil or vegetable oil may also be massaged gently into the skin—including the scalp—to try to reduce scaling and improve moisture retention in the skin. Skin and hair products with tea tree oil may also help alleviate scalp psoriasis.

If oil doesn’t provide relief, consider a regular oat, Epsom salt, or Dead Sea salt bath to relieve redness and itchiness. Creams with aloe, capsaicin, or mahonia may also help stop pain and inflammation, although more research is still needed.

In addition to non-irritating lotions and oils, opt for cleansers, body washes, shampoos, and other hygiene products with as few added colors, scents, and chemicals as possible. Some individuals with psoriasis are sensitive to additives in topical products, especially during outbreaks. The natural minerals found in hard water may be helpful for skin integrity, as well, so avoid using a water softener if you have one.

Eat, Drink, and Feel Merry

Oral supplements and a psoriasis-friendly diet also provide some people considerable relief from the woes of psoriasis.  In addition to some of the topical treatments mentioned above, oral option for psoriasis treatment do exist outside of the pharmacy.

Consider a few simple supplement options. Popular helpers include omega-3 fatty acids, turmeric, milk thistle, and vitamin D. Some of these may relieve inflammation, calm redness, and reduce the frequency of outbreaks, but the effects vary from person to person. Always check with a physician before adding an oral supplement to your care plan.

If you’ve got the gumption to go beyond a daily pill, think about a more holistic change. Revising your diet to be a customized home-based treatment for psoriasis may be your literal “meal ticket” to a healthier you. Be patient, however—it can take up to three months for dietary changes to really work through your system and create a significant change in your psoriasis symptoms.

Firstly, have your doctor check you for food allergies and sensitivities. According to the National Psoriasis Foundation, as many as 1 in 4 people with psoriasis may also have a gluten sensitivity or allergy. If you have an undiagnosed problem with a specific food or food group (like dairy), some of your psoriasis symptoms may be a direct result of repeated exposure to the food. Immediately eliminate any allergens; observe changes in your symptoms over the next three months. If nothing seems to improve, try reintroducing them one by one to your diet to see whether they make your symptoms worse.

If you would rather focus on what you can eat instead of what you can’t, opt for a balanced diet rich in vegetables, fruits, lean protein, and whole grains. Depending on your other health needs, consider targeting a heart healthy, anti-inflammatory, or low-fat diet. No matter your choice, consider finding a regular place in your diet for cranberries, fish, nuts, chocolate, soy, leafy greens, mangoes, squash, and other foods that are naturally rich in antioxidants and valuable nutrients.

Building Your Own Treatment Regimen

After you have identified the most effective topical treatments and diet for your individual symptoms, consider upping the ante (without spending money). Exercise therapy can be highly effective for some people with psoriasis. In addition to increasing your sun exposure and offering a wealth of benefits to your entire body, exercise can promote range of motion and relieve swelling and pain for those with psoriatic arthritis.

Regular exercise (aim for five times each week) can come in a variety of forms. Find the most enjoyable option and make it fit into your schedule—no excuses. Great options for beginners include walking, swimming, stationary cycling, yoga, tai chi, and badminton. Stretch before and after each workout as well as throughout the day, particularly if you have arthritis. If your psoriasis limits the activities that are comfortable for you, ask a health professional or trainer for advice on finding a safe activity for you.

Collectively, a home treatment plan that you maintain and alter as necessary may be your ticket to clearer skin and fewer attacks. Home-based therapies can be at least as important to your health and recovery as pharmaceuticals, and may even enable you to use fewer pharmaceuticals in the long run. Pay attention to your symptoms, track your progress, and make your at-home therapies the answer you’ve been searching for!

 

Katie Brind’Amour, MS, is a Certified Health Education Specialist and freelance health and wellness writer. She enjoys writing about the importance of diet and lifestyle in management of chronic health conditions and is slowly chipping away at her PhD in Health Services Management. Katie also blogs for Women’s Healthcare Topics and loves finding excuses for sneaking dark chocolate into her daily diet.

 

 

 

PSORIASIS BLOG – Treatment Update Seven

Treatment Update Seven

11th Dec 2012

Oh, and if you’ve popped by to tell me to eat hay or give up cheese, please read the  disclaimer here before posting anything. I will publish any replies but not necessarily engage with them ; if you have your own cures or theories I am happy to air them, but won’t be batting opinion back and forth – this is a blog about my personal experience and the medication I am receiving.

 

You might well cry Mr Bond, but try having psoriasis. Dr No-Can’t-Do-Anything-About-That! Moonflaker! Skinfall (et cetera)…

I cried during Skyfall. I should have known something was amiss then. And I didn’t just cry at the emotional -oh-no-someone’s-dead bits. I got teary when anything with the vague whiff of a fan pleasing nod occurred or if Daniel Craig did something quintessentially Bond-esque. Shaken Martini (weep!), cool old skool car gets revealed (unleash the waterworks!), Miss Moneypenny (lachrymosity alert!).

I alluded to various personal and work issues in my last blog too, and yet even those now seem as if they are related to my somewhat discombobulated state. I usually take such things in my stride and frankly my profession is riddled with frustrations and disappointments, so why have I been feeling different lately? Well, I found out last night …

I had an appointment on Tuesday and saw a very charming locum doctor (Dr McBride was indisposed) who was rigorous in his examination, had a gently probing questioning style and was rather regretful when the time came to inform me of my cholesterol levels. I’d predicted a slight rise from the alarming 6.7 I was at but even I was bowled over when a colossal 8.8 had registered from my latest blood sample. That won’t do. One of the reasons is that I am currently on two medications – ciclosporin and acitretin. I am supposed to be reducing the ciclosporin and increasing the acitretin, but because my skin hasn’t been great, I haven’t reduced the ciclosporin at the speed I should be. Each medicine has a cholesterol raising side effect. Taking both at pretty optimum levels (I’m on 25mg of acitretin – the maximum dose is 35mg – and 200mg of ciclosporin) raises my cholesterol twice! The fact that I’ve been eating American food and staying away from the gym probably doesn’t help but let’s ignore that for now and lay the blame squarely at the feet of my drugs!

I have also had an X-Ray to see if the pain in the three fingers of my left hand is psoriasis related arthropathy or something else. If it is it’ll be a relief to know precisely what it is that’s causing the often intense discomfort, but that relief will be sullied by the fact that I have arthritis. So let’s see. I would rather I didn’t have something else wrong with me to be honest. I’m only 38 and I feel like a laptop that’s just this second passed its warranty period – annoying things seem to have suddenly stopped working for no apparently good reason.

And so, last night, I did a turn at a medical do, where it’s safe to say that my comedic musings went down resoundingly adequately. Both Doctors McBride and Mizara (yes, Mizara, I’ve been spelling her name wrong!) were there and spent much of a precious night off talking to one of their annoying patients. Me. During our chats I learned that acitretin can cause upsets in one’s emotional state and can increase anxiety. Suddenly everything fell into place. I’ve been worried about work, money, life, but more so than usual and occasionally quite alarmingly (I have felt like I’ve been teetering on a precipice). And so it’s a relief to discover that it’s not me being weird (I really did think I was going a bit nuts). It’s the bloody pills. So as of today I am off the acitretin, and hopefully this’ll restore me to my usual calm, cheerful, emotionally repressed, buttoned up, grumpy self! It’s a relief as I’m not massively comfortable dropping industrial amounts of pillage down my neck morning and night, and my stomach has always felt a bit dicky since I have been taking all of this stuff.

 

It probably won’t look like this but I wanted a scary looking injection picture to elicit maximum sympathy

I now have to consider – in consultation with my wife – whether I want to chance biologics; those A List, expensive drugs which are self-administered by injection. Frightening but with a reassuringly lofty, industrious aura about them. They’re injections for goodness’ sake; they are bound to work, surely, because you have to stab yourself to administer them. What would be the point in doing something so intensely medical, so brave, so … dare I say it, manly, if it just made me feel a tiny bit better? That’d be like trying to wipe a sniffle with a baseball bat studded with nails. Just sounding a note of warning, by the way, Dr McBride said that one in one hundred patients has an adverse reaction to biologics. With characteristic self-pity I remarked that that would probably be me then, and she said that that is what all psoriasis sufferers think and say. Bugger. Not only am I self-centred and paranoid, I am predictably so. Never mind – I am enjoying this because it turns out that I can blame the hallmarks of my disease for every twattish thing I do, say, think or feel now. That’s kind of reassuring. There are side effects to the biologics, but she won’t tell me about those in detail until I’ve decided whether to take them or not. I am to come back in a couple of weeks with my decision.

Crikey, that’s a first for this blog. A cliffhanger ending …

Toby Hadoke will return …

Another Award

Someone has been nice about this blog again!

I post this only because the link may be useful as it leads to another 21 blogs that you may prefer to mine (he said magnanimously whilst posting something praising him). Top 22 eh? A strange number to choose. Please, don’t bother writing in to point out that there are actually only 22 psoriasis blogs on the whole of the internet: I don’t want to know, thanks.

This year, our specialist panel of judges have reviewed hundreds of different sites from across the internet before hand-picking the very best for each category. http://tobyhadoke.com is among the elite selection of awardees that our judges felt made a real contribution to the eczema and skin condition category and you can see your site in lights here:

http://www.kwikmed.org/22-eczema-psoriasis-support-sites/

Please accept my warmest congratulations, as well as our appreciation of your continued hard work and excellent quality editorial. I hope it continues for many years to come! We’re rolling the awards out fully with our members soon and hopefully it will bring some deserving attention your way.

There are some great winners on the list, including some sites that have less exposure than your site does, and were selected by our judging panel for their unique perspective and contribution. It would be great for all if you let your readers know where they can find some great resources on eczema and skin condition by linking to the awards. Either way it would be great to hear from you.

Once again, I would to send you my congratulations for your well-deserved recognition.

PSORIASIS BLOG – Radio Scar

RADIO SCAR

The day after my trip to Parliament  – 18th October – I went to USP Studios to spend a few hours chatting to a number of radio stations about psoriasis and the See Psoriasis, Look Deeper campaign. It wasn’t just me, as they need some people who actually knew what they were talking about to contribute to the discussion, so Helen McAteer from the Psoriasis Association and Simon Lawton-Smith from the Mental Health Foundation were there to lend a factually correct assessment of the condition and its ties to the sufferer’s psychology, whilst I moaned about the disease and repeated the same anecdotes like a boring actor plugging his tedious autobiography.

 

Helen McAteer of the Psoriasis Association, Simon Lawton-Smith from the Mental Health Foundation and some bloke whose principal skill seems to be the ability to talk about himself a lot.

I was very impressed with how intelligently the subject was handled by our interviewers. Some were live (the interviews that is, as far as I am aware, all of the interviewers were live: the undead are one of the many groups under-represented in today’s hegemonised media) and some were pre-records to go out later: some used all of us, some wisely dispensed with my services and relied solely on Helen, and a couple of foolhardy souls (BBC Radio Manchester and the syndicated Ed Stagg Show which goes out over a number of BBC Midlands services) just used me.

One notable thing that came up was that when we were doing our first interview, the interviewer was asked not to say that people “suffer from” psoriasis, which is what he had written down on his scripted intro. As it happens, during the taped discussion, he did indeed introduce me as someone who “suffers from” psoriasis, and had to do a retake at the end. Simon took the opportunity to ask me what my take on this semantic issue was, and I said quite bluntly that I “couldn’t give a f*** how people describe it” which immediately made me realise how people in my line of work are quicker to swear than people with proper jobs. But it’s true: the interviewer wasn’t being derogatory or pejorative; he was describing a patient with an illness. I didn’t take offence at the implication that I suffer. Why? Because there are issues of import around this disease that are far more pressing than pernickety verbal scrutiny. I know what he meant, and I answered accordingly. If someone says something deliberately hurtful about my physical appearance I will take offence, but not if someone who uses a description without using the vocabulary-de-jour. Who cares? And I know that the people who have decided we must not say “suffer from” have the best of intentions too, but let’s not get diverted by the, frankly, unimportant issue of how exactly it should be described.

I will be linking to a few of the interviews here, but it will take some time as I have to host them on You Tube and doing so involves putting them together on my wife’s Mac which is as slow as an East Coast train from London to Newcastle when there’s a slight breeze and it has rained in the past three hundred and fifty years. The links below will be green when the pieces are ready:

BBC Radio Manchester (me and Heather Stott)

The Wireless on Age UK (me, Helen McAteer and Simon Lawton-Smith)

BBC East Midlands Syndicated (me and Ed Stagg – a long interview this, 21 minutes)

 

 

 

SHEDDING LIGHT AND SKIN – Treatment Update Three

Treatment Update Three

Monday 6th July

A change from the norm. Today I am in at 9am to see Dr Mazara, my derma psychologist, and then at 3pm to see Dr McBride and a joint specialist to see if my back aches and pains are dues to psoriasis-related arthropathy or are simply entropy and old age combining to start my day off creakily.

Dr Mazara is very nice, but I have to admit to mixed feelings about going to see someone to talk about myself and my emotions. When people used to say psoriasis was stress related this gave my younger self something of a boost – stress sounded like noble suffering, a sign that this twenty something drama student might be deeper than his fellows. And we all know how successful those tortured artists are – Mozart, Van Gogh, Tony Hancock, well why not add Toby Hadoke to that list (in fact, most people spell my name closer to an approximation of Hancock’s than my own ; maybe it’s fate). Now, though, the somewhat maturer me is somewhat less patient with the idea of navel gazing. I’m not of a generation who fought through a war and saw all sorts of horrors – and my grandparents and their lot seemed to survive pretty well just getting on with things without requiring the state to support them wanging on about things that upset them to a medical professional. Dr Mazara assures me though, that lab tests as recently as 2010 have shown a relationship between a patient’s psychological state and the grip that psoriasis has on them, so it’s not all hippy-hippy-let-it-all-hang-out-man claptrap. Whatever – I have resolved to throw everything I can at this so I’m not going to let my own innate prejudice towards self-indulgence stop me from trying something. I am aware that hatred of self-indulgence coming from someone whose career involves talking about himself out loud a lot might seem a bit hypocritical, and that’s because it is. It’s almost like I loathe myself for doing what I do and being what I am …. So I shouldn’t be seeing a psychologist for what reason precisely?

 

Me, about to enter The Daily Mail website. The things I do for you lot.

This part of my treatment is pretty well individual so I won’t report too much of it; I’m not being cagey, but I’m not sure there’s an awful lot about it that’ll be any of use to anyone. However, I mention it because there’s an article in the (wash my mouth out) Daily Mail that covers Dr Mazara’s work and the connection it makes between emotion and the skin (blushing, sweating etc.) seems a convincing one. Anyway, for the first and last time in my life I will direct you to the Daily Mail as it’s an interesting piece, though the comments below it have a reassuring level of insanity just to remind you how squalid the area of the internet you have just entered truly is (it’s here). Have a hot shower afterwards. And the dubious must be aware that I too am very much a reluctant soul-bearer: I think people wallow and self-indulge at their peril. But Dr Mazara is good at putting a sensible and reasoned perspective on things and I don’t leaving her feeling anything other than more positive so I’m giving it a shot: and I may as well go for it wholeheartedly or not at all.

Then onto Dr McBride, who is cautious about my slightly raw sounding throat and prescribes me some antibiotics just in case I sense another outbreak of tonsillitis. She is very aware of my imminent trip to Edinburgh and so is treating me accordingly. She doesn’t want to try anything drastic as if anything goes wrong it’d be a bit of a disaster geographically and would probably be as useful for my show as a one star review from The Scotsman. So ciclosporin continues, with a vat each of Doublebase and paraffin moisturiser to take with me. No surprises there really, as I had only really seen her last week and not much has changed bar her contact with the immunologist, which revealed that I will probably be alright taking the biologics. Whilst she says that it is good to have them “up our sleeve”, she feels that “the purist” (I like that) in her is erring towards acetratine with preventative anti-biotics. The reasons for this are outlined in my last treatment update and were simply re-emphasised today in the light of this new information. She noted, with a wry smile, that there are some possible side effects, and I glanced glumly upwards at my thinning thatch. Ah well, I suppose now that at least when I consider my increasingly threadbare pate I can reassure myself that it is no longer baldness – ‘tis a noble brow rent by suffering. Anything for the most dramatic emphasis. Anyway, today I was there for my joints and did some bending over and stretching and all seemed OK – there’s a slight query about my back so I’m having an X-Ray, but I was discharged by the joint doctor on the very first day I saw him. I can only imagine how jealous Drs McBride and Mazara must be of the lucky fellow.

The Psoriasis Association has started a new initiative which involves sufferers writing a postcard to the disease to tell it how it makes them feel. The cynical amongst you may scorn this as you did my opening paragraph, but I’m fascinated that those at the very top of the profession of understanding, curing and representing the disease all feel that there is something in it. So I’m not going to argue. They also feel that there is a massive stigma still attached to psoriasis, and that it is rarely talked about (eczema steals all our limelight – it’s the A-Lister of the skin disease world). There’s an event/initiative happening in October that I will try to be involved in, which is helping to raise awareness of this affliction that touches between 2-4% of the population. Dr Mazara tells me that there are still people who are too ashamed to admit that they have it. Because I’ve never been worried about my looks (what’s the point?) and dress like someone who fell asleep in a hedge in 1976 and only thawed out yesterday, I guess I’m lucky. I still feel ashamed sometimes, and very self-conscious if people stare or remark upon it loudly within my hearing but without acknowledging me (which happens more than you’d think). Generally though, I don’t mind people seeing it, I don’t mind talking about it, and have little difficulty expressing myself – but for others I know that it is a far more difficult and painful process. So who am I to begrudge them the opportunity to try? It’s a lot more than skin deep, this disease.

Here’s a link to the postcard business.

I’ll end this by quoting from Josh, who made a comment on one of my earlier blogs. I don’t know Josh, but his story is very telling and I thank him for sharing it.

While I only have two “spots” of psoriasis–one of which is a big, angry red, often bleeding, plague looking circle on my right upper arm–they really negatively affect my life. I live in NYC, where beauty is king, and have stopped going to the beach this summer as I don’t want to endure the stares and questions (“Dude, are you like dying? Is that AIDS?”). Although I am in top physical shape, I never take my shirt off anywhere which precludes me from playing basketball–once a passion of mine–anymore.

SHEDDING LIGHT AND SKIN – Interlude

An interlude.

I’m learning with this blog. I’m not entirely sure what its purpose is. Information? I suppose, but this disease is such a personal thing that any facts about my case are pretty much exclusive to me. Also, I am not a doctor, and so much of what I type here is the words of experienced and talented medical professionals filtered through the brain and fingers of a scientific nincompoop. It’s like having Einstein’s theory of relativity explained to you by Jedward.

I just wanted to talk about it really, hopefully with a certain lightness of touch (and dare I say it, the odd funny sentence?) so that my prose isn’t as dry and painful as my condition. As a result of my early efforts, people have sent very kind or concerned messages, for which I am surprised and grateful. Yet sympathy really wasn’t the reason I put cursor to screen. I admit that receiving compassion has a certain appeal for someone in my line of work – lest we forget, I earn a living seeking the verbal affirmation of complete strangers on a nightly basis. Indeed, I am afflicted with a tendency towards self-indulgence and wallowing which can be synonymous with the manifestation of psoriasis. I’m easily troubled and I tend to ponder things too much; social gaffes committed 15 years ago still make me wake at night with a start. I don’t intend to work this through on the internet though, as I am doing so with my doctor. Neediness is unseemly enough, but public displays of it should be a capital offence. I merely mention all this in passing, as the psychological element of this disease may well be as important as the physical. Time – and shortly thereafter, this blog – will tell. As it craves sympathy maybe it should be called sympetigo (badoom-tish … I’m here all week).

I have withdrawn my first attempt at episode two of these meanderings – only for a couple of days while I restrucure and rephrase it, and perhaps add another funny sentence to balance the small amount of body horror it contained. Everyone was very nice – empathic notes, “how brave” etc etc. If those responses were what I was fishing for deliberately then any self-flagellation that resulted would be thoroughly deserved. I sincerely hope, however, that I wasn’t. I’m just trying to provide a voice: and a dispassionate one at that. When I report self-loathing or embarrassment I do so without any desire for comfort. Much of what I am writing about took place long ago. The feelings I had about the dermatitis on my face in my 20s or the guttate psoriasis spotted (Hah! Joke! “Spotted”? See what I did there? Told you there were funny sentences) in the school changing rooms have dissipated over time. They no longer hurt me; in the same way that I have got over losing my pocket money that week, the death of that hamster, and getting dumped by that I***** W***** (name redacted lest an innocent self-Google results in a nasty surprise for the lady in question). I am currently enjoying pain free conditions and fastidious care from professionals whom I trust – believe it or not I am extremely positive about this thing. I just thought that after my last serious bout it might be nice for people to read up on the disease in a series of pieces unencumbered by impenetrable medical jargon.

A few of you out there have said that previous instalments were useful – that’s good, I like useful, thank you. But I think I misjudged the tone of the original episode two which was about my unshakeable (or Shake ‘n’ Vacable) scalp condition. It contained a number of rather grim physical descriptions which might have been a bit much this early in the blog. This occurred to me after yet another comedy gig last night where I was trying out new material for my next stand-up show, in which psoriasis plays a small part. I still cannot tell good jokes about the condition without some audience resistance (people still say “urrgh” – nice). It seems I can suffer from it, but talking about it is beyond the pale. Interesting – I relayed this to Dr McBride and she said that the stigma attached to the disease is one of its major issues. Eczema is still, it seems, the more acceptable face of skin disease as far as the general public are concerned. Well, I don’t hurt anyone, I’m not contagious, and you can’t really see it on me. So why can’t I talk about it? Perhaps because it isn’t talked about enough. I don’t mind having the disease, and it doesn’t cause me great emotional turmoil on a day-to-day basis, but I was mildly irritated last night when people said “urrgh”. Sure, I don’t want sympathy, but revulsion can sod right off too.

So that’s why I’m doing this blog! Excellent. I have just (through typing this and another interrogation of my most patient physician) worked it out. Useful (and probably better for me to type than you to read, so sorry about that). I am writing this because nobody really talks about psoriasis and not enough people know anything about it. And yet everybody knows somebody who has it.

I just needed to work it through, and now I think I have. The treatment of psoriasis involves a lot of trial and error, and so will this blog. Bear with me.

(Episode two, meanwhile, will reappear shortly).