There could be mayhem here soon .... 'Crazed, half-bald woman seen running naked down country roads screaming "get me out of my skin!"' It's the psoriasis, I've gone off clothes - they make it worse.
Perhaps I should post in Emotional Support but I don't want sympathy ..... and I've got enough potions to open a potion shop. I just want to tell someone, preferably not the neighbours or the police or my long-suffering husband, that I cannot stand my whole body itching and burning. How the heck do people cope??? Off to doc tomorrow whether they've got an appointment slot or not 'cos the damn thing is doing something increasingly painful to my inner ear. I'm on the warpath.
Sybil’s on the warpath … this is serious.
Seriously, I’m sorry that this is being heaped onto your already-full plate.
Think cooling thoughts, and stay inside.
Aw, Sybil, I feel so bad for you. Wth is going on here???? It makes me so p.o.'d that someone who's been treating the PsA with success for awhile all of a sudden has so many problems. The disease is EVIL!!!!!
When my psoriasis first broke out in my early 20s, Clobetasol (Temovate) and Betamethasone (Diprosone) worked best, and the dermy did a lot of sunlamp treatments. Now they have chambers with light therapy--maybe you're doing that already. Did they stop the Humira? I mean your doctor needs to get on this and figure something out! It's hard to be patient when all this is happening, and so unexpected! I remember there was a prescription "nerve" pill I took for awhile to quiet the itch--but it's been so long ago I can't recall what it was. It made me tired, but it did stop the itch.
Hey, Sybil, I just tried to find the name of the oral rx med I took for itch, but I couldn't find it. But, I did find something!!!!
Idk if you remember me mentioning I took Nortriptyline for burning painful neuropathy in my feet. I remember a lot of other people told us they took Amitriptyline for that, also. Well, I just found both of those meds listed together as treatment for burning, itching skin !!!! There are common SEs, which I had a couple-dry mouth, vision problems--but if you take a small dose (10mg - 20mg) those would be minimal. Has your doctor mentioned these meds? Nortriptyline was like a miracle pill for my neuropathy, and if it's used for itchy, burning skin, I imagine it could be pretty effective.
Thanks Seenie and Grandma J! I will try to stay inside Seenie, especially when countryfile is being filmed. I know they like strange birds but there are limits.
Both derm and rheumy are in agreement that stopping Mtx back in January is a likely cause of the psoriasis flare. I've tried to explain to both that I didn't have psoriasis for @ 23 years before I started Mtx .... so why are they thinking that a couple of years of Mtx is what kept psoriasis at bay? I'm tempted to think that psoriasis was in remission and now it's not. It was so mild when I had it before, but it did last for at least 10 years solid!
So they are putting me back on Mtx. Had to finish course of anti-fungal tablets first. I have a range of steroid creams, gels, liquids ..... possibly the full range. But Grandma J, what you're telling me is that there are still quite a lot of options. Just hearing that is soothing! I'd heard of the light therapy but did not realise that there are things you can take to calm the itching. Looks like that's something to ask about and perhaps have in reserve for insanity-prevention.
I am still on Humira. They think if it was Humira-related I'd have PPP, but in some lights I think I probably do have PPP. Both derm and rheumy are seeing me quite frequently just now but the rash flares badly in the evening so obviously they don't see that. I'll take photos next time.
Basically I feel confident the doctors are doing everything they can and that their approach will evolve as & when necessary. But I am beginning to doubt their current view that this is a flare that will calm down soon. I'll happily eat my words though!
Oh cripes ..... did I just see you run down my street?????????????
Silk is fabulously soft, cooling and non-irritating next to itchy skin so dig all your best kit out. And OTC anti-histamine is better than nothing .... just get the pharmacist do a safety check against anything/everything else you're taking.
And try to keep cool in the evenings. Avoid alcohol ... yeah, I know, but it dilates the blood vessels and makes the itching worse even if it helps calm the mind ;-)
Silk did you say? Well I have to go into town later, this could be a game-changer in terms of my image. But actually, it does make a whole lot of sense, even fabric with a barely perceptible pile hurts my palms especially. Though I've found that steroid creams seem to bleach fabric .... ? Okay, therefore I'll look for some cheap stuff for evenings, possibly charity shops might be a good idea.
Alcohol is now at a minimum. One glass savoured some evenings, more than that reserved for special occasions. Increasingly I find it makes absolutely everything worse.
You're safe where you are .... I can run maybe 50 metres but not that far.
Thank you so much.
Jules G said:
Oh cripes ..... did I just see you run down my street?????????????
Silk is fabulously soft, cooling and non-irritating next to itchy skin so dig all your best kit out. And OTC anti-histamine is better than nothing .... just get the pharmacist do a safety check against anything/everything else you're taking.
And try to keep cool in the evenings. Avoid alcohol ... yeah, I know, but it dilates the blood vessels and makes the itching worse even if it helps calm the mind ;-)
My joints are good, I'm so lucky! I could probably run a lot further with practice.
I am finding psoriasis plus the alopecia much more difficult to handle mentally than the joint disease though. There's no mileage in analysing why that is. It's how it is. I'm trying.
Grandma J said:
Wow, Sybil, run 50 metres???? I can maybe run 50 inches haha!!! Oh, yeah, I have a few years up on you!
My skin hurts, too, but it's a symptom of the strep, I think. Oh god, I hope you get that under control quick. It's uncomfortable as hell!
Just my two cents…I suffered with the pain of this for too many years. Recently stopped eatting sugar annd dairy . I am psoriasis free. I kid you not. Might be worth a try. It took a month for mine to clear.
I wonder ...... I can't see the point of sugar, except I like it as a treat, we cook everything from scatch, almost everything & sugar doesn't come into it .... until we get to the occasional pie .... or cake! I'm sure it's worth a try but I think I'd have to be more desperate than I am already, watch this space!
And thank you Kathy! Kathy said:
Just my two cents...I suffered with the pain of this for too many years. Recently stopped eatting sugar annd dairy . I am psoriasis free. I kid you not. Might be worth a try. It took a month for mine to clear.
I agree with the sugar thing, because I'm almost 100% sure sweets, especially ice cream, made my foot neuropathy worse. I don't doubt they're really bad for us. I try to limit myself to one sweet snack per day, but sometimes I have more. I guess I'm not desperate enough to give them up altogether.
Sybil, you sound like you don't take in enough sweets to be bothersome-could your culprit be dairy or something else? Have you tried eliminating things like nightshade vegetables from your diet? Did you start taking turmeric?
I guess I'm better at doing something new than I am at giving things up. And the trouble with looking at diet is that pretty much everything is hearsay. If someone is sure that eliminating certain foods works for them and isn't jeopardising their health by doing so, then that's got to be a good thing for them. But I see no compelling evidence against dairy products, nightshade foods or even gluten. There are 'theories' but they tend to cancel one another out.
I can go with limiting sugar .... it's getting such a bad press that I'm convinced it does us no good in general. It has little nutritional value, maybe none unless you're starving. There are enough naturally occurring sugars in fruit and vegetables anyway. But the other foods seem like good stuff to me. I know that I / we need good food, that's for sure. But I have no way whatsoever of knowing whether anything environmental is triggering or exacerbating the psoriasis.
Haven't started turmeric yet as I've taken so many drugs recently I think I should just double check with my rheumy about the possibility of contraindications when I see him next, not that long to wait.
Funny thing is, when we got our little old dog some months back, she was a bit moth-eaten and shabby like an old teddy bear. Now she's all fluffy and shiny while I look like I need re-homing. I suppose I could try Pedigree Chum and the vitamin E supplement the vet gives her.
Grandma J said:
I agree with the sugar thing, because I'm almost 100% sure sweets, especially ice cream, made my foot neuropathy worse. I don't doubt they're really bad for us. I try to limit myself to one sweet snack per day, but sometimes I have more. I guess I'm not desperate enough to give them up altogether.
Sybil, you sound like you don't take in enough sweets to be bothersome-could your culprit be dairy or something else? Have you tried eliminating things like nightshade vegetables from your diet? Did you start taking turmeric?
Can't see this catching on .... but yesterday I was chopping hot chillies, picking them up with my right hand. Forgot that the palm is cracked ..... blimey, that was something else! But today that hand is loads better!
Strangely enough Sybil, I’ve bought cream before that contains chilli extract that heats the skin to help aching joints etc…not heard of it for P though! Trouble was when I used it it gave off vapours which caused an asthma type attack! Hope you get relief soon, it’s bloody miserable for you x
Thanks Louise! If this improvement lasts I might just, possibly, maybe ..... try a little chilli juice elsewhere.
Louise Hoy said:
Strangely enough Sybil, I've bought cream before that contains chilli extract that heats the skin to help aching joints etc.......not heard of it for P though! Trouble was when I used it it gave off vapours which caused an asthma type attack! Hope you get relief soon, it's bloody miserable for you x
Sybil - I'm so sorry you're experiencing the horribleness that is a psoriasis flare - I had one of those about 10 years ago and I swear everything my Derm gave me made it worse. I fantasized about just removing my skin with a fillet knife and wore the baggiest clothes I could find (grunge was kind of my style back then anyway!).
I just wanted to echo whoever else suggested light treatments - I think that's all that saved me the last time. Since I didn't have good insurance at the time and the light treatments were awful expensive, I took the poor man's route and jumped in a tanning bed a couple days a week (generally for no more than 4-5 minutes a pop). Never had anything clear up my psoriasis that fast until I tried Enbrel last year (bad reaction though so I'm on the Humira now).