Psoriasis

Dubl07

Gael23 wrote: »

If I had a respiratory condition like COPD or Asthma I would be locking myself into a room. Someone with COPD would die from Coronavirus

I'm trying, but when the only slots for groceries are collection from Naas, Greystones and Clare Hall, it's a bit awkward to ask someone to get things for me in Stillorgan. I may have to go in the car and collect.

rubadub

My scalp is in the best shape its been in 10+ years. I had it down to a 1.5 blade, then 0.5 and now is completely clean shaven -closer than no blade on a regular trimmer as my wahl trimmer is a special "balding" one.

It is great being able to apply cream so easily, I dilute dovonex about 1 part to 5 parts vaseline. I wonder if having it so short helps somehow, more light can get to it I suppose, but I wonder if the hair itself caused irritation or something.

I was always worried what the skin would look like totally shaved off, but knew it would have grown back to a blade 1 or 2 in the couple of weeks. It went a little red the first day but that is just skin irritation from shaving, I get the same on my face or back of my neck with the same clipper, a bit of sudocrem would sort that out.

EDIT
Found discussion and a woman even did it and wore wigs

https://www.psoriasis-association.org.uk/forums/topic.aspx?ID=673

I shaved my hair off about 3 years ago and it's the best thing i ever did. cleared up really quick, girls will want to touch your hair and you'll look like a bad ass lol. but seriously will do wonders for the scalp and will look good also number 1 should be fine. now i shave the back and sides and have a little length on top up play with like a us army cut but longer.

just do it it grows back anyway but its worth it being short, easy to maintain and looks good! i grew a beard to compensate and now have a bit of P on my face but its worth it.

I did it three times over the last 5 years, and it really helped, even when I wore wigs at work (I'm a woman). My hair is medium lenght now, and I still have to use tar and salicylic shampoos and topical corticosteroids regularly to keep it bearable.

I am a 66 year old woman, have always had long, beautiful, thick shiny hair. After seeing that sunlight controls the psoriasis on my other skin, I asked my derma about sunlight and light treatments helping on hairless heads...the answer was a firm, YES. So, I quickly shaved my head before I could change my mind. What a gift I gave to myself.

I was using the scalp oil overnight, the medicated shampoos...all as I was told, and it was not making much difference. It was a no-brainer for me. Trade my hair for being able to stop using steroids on my scalp? You BET!

In just 7 days, the lesions covering more than 1/2 my scalp were 90% healed....just redness left, no raised areas, no plaques. Today, after four weeks, my scalp is clear, like my arms and legs and back. No steroids or other medications, just sunlight and light treatments.

I have to keep my scalp shaved close......about 2-3mm.....so I buzz it every three days. I get many compliments on my "hair cut." No, it was not easy, but I felt it was the one sensible option. And I'm COMFORTABLE again! OK! I do miss my hair, but ...... -Nan

and a young woman
https://plaquepsoriasis.com/living/shaved-head-no-scalp-psoriasis/

What did my shaved head look like?
I thought that my scalp psoriasis would be incredibly noticeable, but to my surprise, it really wasn’t. It was clear that some of the areas on my scalp were pinker than others (and it was still itchy), but it didn’t look anything like the psoriasis on my arms and legs.

Did shaving my head help?
Well, within about 7 days of doing touristy stuff out in the sun, my scalp psoriasis totally disappeared. There were no pink spots, no itching, and no flaking. I even discarded my coal tar shampoo and hair brush to free up much needed room in my backpack. I can’t say that this would be everyone’s experience, but my psoriasis has always responded really well to the sun, and my scalp was no different.

Scalp Psoriasis Remission
It lasted until the end of my trip when I came down with a stomach bug and needed antibiotics (which always send me into a flare!). By that point, my hair was about a quarter of an inch long. I will say though that my scalp wasn’t as bad as it normally was during a flare, and it made applying the coal tar shampoo so much easier and more effective (be honest, 75% of our medicated shampoos end up in our long hair, no matter how hard we try!). Even 6 months to a year after I’d shaved my head, applying the coal tar was so much less of a hassle.

Shaving my head is something I would absolutely do again. If it’s something that you’ve been considering, just go for it. After all, it’s just hair, and it will grow back if you want it to! I promise you’ll look like dynamite.

echo beach

Dubl07 wrote: »

I'm trying, but when the only slots for groceries are collection from Naas, Greystones and Clare Hall, it's a bit awkward to ask someone to get things for me in Stillorgan. I may have to go in the car and collect.

There are volunteers in all areas willing to collect groceries. Have a look at local community Facebook pages or check with your county council. The one upside of all this is the great community spirit being shown.

Joker23

Gael23 wrote: »

He died as a result of immune suppressant drugs. There are a lot of gaps in the reporting of the story

Hi, literally signed up to ask this question. Could you point me in the direction of where you saw this death was because of the drugs please?

I suffer from psoriasis and psoriatic arthritis (both completely under control) and extreme health anxiety, and am currently finding it hugely difficult to decide whether to take my Humira or not.

Thanks!

siblers

Just paid €85 for a 60g tube of Protopic. Its a non steroid cream for the face. Hope it actually works

huskerdu

Joker23 wrote: »

Hi, literally signed up to ask this question. Could you point me in the direction of where you saw this death was because of the drugs please?

I suffer from psoriasis and psoriatic arthritis (both completely under control) and extreme health anxiety, and am currently finding it hugely difficult to decide whether to take my Humira or not.

Thanks!

I feel for you. It's a very worrying time.

You should not be making decisions based on news stories, which are likely to have incorrect facts. No news story is going to know the details of that childs medical history of what happened.

I urge you to contact your consultant tomorrow by phone and ask what to do.

Everyone is different and your consultant knows you and your medical history best.

I am sure you are taking all the rules about social distancing seriously, so you are already doing everything you can to protect yourself.

brevity

Joker23 wrote: »

Hi, literally signed up to ask this question. Could you point me in the direction of where you saw this death was because of the drugs please?

I suffer from psoriasis and psoriatic arthritis (both completely under control) and extreme health anxiety, and am currently finding it hugely difficult to decide whether to take my Humira or not.

Thanks!

This might help you:

https://www.guysandstthomas.nhs.uk/our-services/dermatology/dermatology-and-coronavirus-frequently-asked-questions.aspx#MoreinformationaboutmyriskfromCOVID19andmymedicines

eeloe

siblers wrote: »

Just paid €85 for a 60g tube of Protopic. Its a non steroid cream for the face. Hope it actually works

It's great stuff, a little goes a long way, just be careful over the summer being out in the sun with it, it can cause photosensitivity.

siblers

eeloe wrote: »

It's great stuff, a little goes a long way, just be careful over the summer being out in the sun with it, it can cause photosensitivity.

Tis working very well so far, skin feels so much smoother and don't have to worry about skin thinning etc. Only slight issue is that there's a mild burning sensation but nothing too bad

siblers

I wonder how warm it needs to be for natural sunshine to be effective. Will be around 16c today, wonder if that's not warm enough

CtrlAltDelete

siblers wrote: »

I wonder how warm it needs to be for natural sunshine to be effective. Will be around 16c today, wonder if that's not warm enough

Heat isn't anything to do with it really. It's just UV exposure. Obviously more of it on a clear sunny day with the added benefit of it being warm while you've got a lot of yourself exposed to the elements.

rubadub

CtrlAltDelete wrote: »

Heat isn't anything to do with it really. It's just UV exposure.

+1, I've been out the last couple of days can feel it. esp. now that I am shaving my head totally. I go out at 12-1pm if possible when its strongest. Its warm enough now that I could go out with my laptop and work outdoors.

Gael23

Heat means nothing, it’s UV light that helps

rubadub

Got a nice level of redness out in the sun today & yesterday. Had to put sunscreen on top of my head as it would have been fried today.

rizzee

Hope everyone's soaking up that sun!!

rubadub

Found an Irish online chemist with dovonex for 24.50, its usually 25,

They sell a max of 2 and you get free delivery if its over 30euro. So not huge savings but saves you travelling outside.

https://www.inishpharmacy.com/p/dovonex-psoriasis-ointment-60gm/a18725

400g sudocrem is 10.95 which is a bit cheaper than tesco or supervalu

Eurax is 10.99 which is cheaper than I usually pay.

wonga77

rubadub wrote: »

Found an Irish online chemist with dovonex for 24.50, its usually 25,

They sell a max of 2 and you get free delivery if its over 30euro. So not huge savings but saves you travelling outside.

https://www.inishpharmacy.com/p/dovonex-psoriasis-ointment-60gm/a18725

400g sudocrem is 10.95 which is a bit cheaper than tesco or supervalu

Eurax is 10.99 which is cheaper than I usually pay.

Is Eurax any good?

rubadub

wonga77 wrote: »

Is Eurax any good?

Yes, I find it excellent anyway, its does nothing directly for psoriasis, it's an anti-itching cream. It goes to work surprisingly fast.

Gael23

The Bioderma Atoderm SOS spray is great for itching. Not familiar with Eurex or the price of it.

rubadub

Gael23 wrote: »

The Bioderma Atoderm SOS spray is great for itching. Not familiar with Eurex or the price of it.

I never heard of that one, it uses a different active ingredient so could be worth having as a secondary backup. I like the eurax cream as it can be pinpointed easily as its typically only a dot behind the ear or small areas that need it.

Only once in about 10 years of use was it not enough, it worked to a fair degree but I had an overwhelming itch but antihistamines then worked along with it, it was diphenhydramine which I happened to have for hayfever.

rubadub

I have a new light on the way, 2x36W UVB narrowbands were €147.05 including delivery for the pair, they are philips brand and I would stick with them instead of generics. Then a very basic light fitting that takes the 2 bulbs was €63.95 including delivery. So bang on €211 for the lot which I was very pleased with.

Each 36W gives off approx 6 times the UVB of the small 9W bulbs that the small units use. A higher W bulb typically is more efficient so its not just 4 times (4x9=36). But you would have it at a further distance away from you so it would have less effect so its more difficult to compare.

khalessi

rubadub wrote: »

I have a new light on the way, 2x36W UVB narrowbands were €147.05 including delivery for the pair, they are philips brand and I would stick with them instead of generics. Then a very basic light fitting that takes the 2 bulbs was €63.95 including delivery. So bang on €211 for the lot which I was very pleased with.

Each 36W gives off approx 6 times the UVB of the small 9W bulbs that the small units use. A higher W bulb typically is more efficient so its not just 4 times (4x9=36). But you would have it at a further distance away from you so it would have less effect so its more difficult to compare.

is that for light treatment?

rubadub

khalessi wrote: »

is that for light treatment?

yes, I have a 9W one for years and it works great, just very time consuming doing loads of places.

khalessi

rubadub wrote: »

yes, I have a 9W one for years and it works great, just very time consuming doing loads of places.

What type set up is it? I was getting the light treatment in hospital and finshed in Jan I think but have noticed small bits creeping back, one if these could be handy.

rubadub

khalessi wrote: »

What type set up is it? I was getting the light treatment in hospital and finshed in Jan I think but have noticed small bits creeping back, one if these could be handy.

You should talk to your doctor before getting one.

This is a typical size and use of a small one

they vary in price a lot, some have timers built in. All the small ones use 1 or possibly 2 of the same 9W philips bulb. Some use generic bulbs which are said to have a shorter lifespan and not as tight a range of wavelength.

The bulbs use standard connections, so if you know how about light specifications you can just buy a standard light fitting to use the bulb in. Like an office lamp instead of the hand held one. Many cost a lot as they have just put a medical tag on them. Other sellers are just fitting the bulbs to standard office light fixtures and can be a more reasonable price. Like this one https://www.ebay.com/itm/Lamp-UVB-Narrowband-9W-311nm-for-Eczema-Leukoderma-Psoriasis-Acne-WHITE/352799489897?hash=item52247cff69:g:8lkAAOSwH1BdiGWP

I built my first small light myself, getting the electrical ballast and fittings etc. My new one on the way is intended as a grow light, most probably used to grow cannabis! I wanted to get a German branded one which is for use on building sites, but it is no longer manufactured, probably since LEDs took over. This would have come with regular bulbs I would not use, so I save a bit on the one I got as it comes with no bulbs included.

As you have gone though a course you likely are aware of all the safety needed, goggles, timers, watching for excessive sunburn, masking areas etc.

rubadub

Here is an office light that will take a 9W bulb. €35.85 incl delivery.

https://www.lights.ie/workplace-light-pracy-with-clamping-base-62578-ie-en.html

It has to have the G23 base for the bulb and be capable of 9W or more and be for fluorescent bulbs (not LED). This one is meant for an 11W bulb, So this is good & bad, It is good since you know the electical ballast is more than capable of powering the lower powered 9W bulb, sort of a large laptop charger and easily power a small laptop.

The downside is that it is expecting a longer 11W bulb, this is only a small point. You can see in this image the bulb has little clips to support it in place.



I have no clips on my light and the base holds it just fine, the smaller bulb is lighter and does not really need them. Also the clips in the photo are not at the very end so there is a good chance it would still clip onto the 9W philips.

The bulbs can be got on ebay, the cheapest are from China but I would stick with the Polish sellers. The bulbs are made in Poland so it makes sense that they could be cheap from there. There are generic bulbs and I would fear the Chinese could be counterfeit, but also with the longer journey there is more risk of them being broken.

This is £49 including delivery, so about 56-57euro
https://www.ebay.co.uk/itm/PHILIPS-9W-01-2P-311NM-BULB-UVB-LAMP-VITILIGO-PSORIASIS-DERMATITIS-ECZEMA/153821052336?hash=item23d072fdb0:g:~f0AAOSwUfRea3En

So its about 93euro for the 2, but you need UV goggles and a timer, I use 2 timers in case one goes wrong as it is absolutely critical.

eeloe

How’s everyone getting on?

I’ve been taking my shots at 12 week intervals as normal.
Haven’t went in to isolation or cocooned or anything.

All going good so far!

qo2cj1dsne8y4k

Still on my shots but every single time I take one (every two weeks) my leg swells up and I get a rash. Two trips to the dr on the recommendation of pharmacist and both times the drs were like ... take an anti histamine, what did you say the name of it was again??

brevity

I started Tremfya about 4 weeks ago. I'm due my second loading dose today and then its every 8 weeks.

It's probably too early to say if it's had any difference but hopefully it works. I'm seriously fed up and the Psoriatic arthritis is killing my hands. I have an appointment with rheumatologist next week so will see how that goes.

Gael23

I got a nasty dose of tonsillitis in March which knocked me about a little but just now feeling back to normal. My bloods have returned to normal too which is good.

I’m working from home for the foreseeable future but other than that doing everything as normal