I have severe PsA and almost no Psoriasis. I have had three outbreaks of psoriasis and have one tiny spot on my calf that remains. Other than that the damage has been solely to my joints. I have horrible pain and widespread joint destruction. They say that the psoriasis arrives first but not in my case. And they say that if the PsA is severe that the psoriasis will be also. AGain, I broke the mold. Which leads me to believe that there IS no mold and they only have averages to work with.
So funny you asked this question. I also have PsA with no psoriasis. Started with me when I was 45, thought I had head lice...lol Couldn't get anyone in the house to look at my scalp, the kids thoght it was gross and my husband thought I was crazy. Went to work and asked a co-worker to look and she said OMG your head is going to fall off..Anyway I went to a dermatologist and he diagnosied me with PsA becasue at that same time I had severe one spot on my foot that was so severe in pain. He told me that was a typical case of PsA. I shamed him on making such a quick diagnosis and he just laughed. Told me to take Enbrel for a few weeks and see if he was right. He was of course... But now after several years I am now on Remincade infusions now just got bumped up to every 7 weeks. My question to everyone is: this toe fungus thing? I have a very sore fungal big toe that no one seems to be concerned about. It is interfering with my gym shoes for work. Any ideas for treatment?
To Julittle: It's kind of scary at first I agree. But I've never been on meds in all of 15 years. Mostly because of a misdiagnosis at the beginning. Real diagnosis about 3 years ago. It's been 15 years since I have it. I live a normal life. Sure I have some joint pain but nothing that an over-the-counter med can't help. I do have morning stiffness but it's gone within an hour or so. It seems I have one or two real flare-ups a year where I spend two or three days in bed because I'm aching with multiple joint pain all over. Other than that and the psoriasis I am completely fine. So, I'm not trying to dissuade you from any meds, that's certainly not my intention. I'm trying to calm your fears. The way your dermatologist told it would scare me half to death too. I'd be thinking the worst. Yes, it can be debiliating for some but I'm doing fine. The minute I will start to feel worse is the minute I go on the meds. As I said, the minute the PsA starts to interfere with my normal life is the minute I'll run to the rheumatologist. So try not to let the fears get the best of you. You have lots of time to make your decisions with your physician.
Re toenail fungus...I thought it was fungus but when I went for a pedicure the gal doing it said she'd never fungus like that. Ever. The nail was thick and discolured and spongy almost. Would break off. However, had a bout of it with my big toenails. They were different. Had a line across of the nails and they eventually discoloured and then broke right off. Fell off actually. I guess this was psoriasis on the nails. Never happened again. And my little toe nails have cleared up and have been clear for a year, after 14 year!! Imagine. When I showed them to the doctor there was little concern too. The best part now is I don't have to put nail polish on my toe nails!! I did for years to hide them.
The nails falling off hurt so bad ! I am a pretty strong person but I went to the dr., crying hysterically ! So happy when my nails looked normal again. The mtx blew up my liver so the dr. Cut my dosage and my nails started to lift off again !
Hi nora, iMy name is Kathryn and I have psa but don't have normal psoriasis. My mum had psoriasis really bad, but I developed joint problems initially, I was tested by nail clippings which came back poisitive, although I remember having sore skin that doctors said was thrush, it turns out that this was inverse psoriasis, and I had this for at least ten years before the joint problems. my nails are thick, discoloured and often lift off, and as a nurse, I didn't like feeling like this, especially having to apply creams to sore skin.
When
I first saw the Rheumatologist, she was adament that I didn't have PsA, but two days before Christmas, I had to see her, my husband and I were shown into a room, the blinds were drawn, and we were given a cup of tea. The nurses looked at us in such a way, that I recognised as sympathy. I had delivered enough bad news to patients.. i could read the signs! When the news broke that I had PsA, I cried with relief. I thought I had cancer! She was bemused by my reaction to such a serious disease!
I too was diagnosed with PsA and milti-site osteo the same day. I had no idea what was going on with me I just knew Ihurt, I was losing hair, and I was so tired I couldn’t see straight. I have very light plaque psoriasis in my ears and on my scalp. Couldn’t see it didn’t ave much flaking just itched a lot. I’m on Methotrexate now and thank God haven’t had any problems. However rheumy wanted to put me on Humira to which I sad no way. I have however, in the meantime, discovered coconut oil pills has TREMENDOUSLY helped with the rash and a combination of fish oil and glucosamine with the mix has helped incredibly with the joint pain and stiffness.
You know…just from reading all your comments…it’s so obvious how many doctors missed a diagnosis. I see many of you ended up at one or another specialit over many years before finally getting it right. With me…it was after severe and deformity had already happened and that can’t be changed now. I suppose all I can get out of doing treatment with Enbrel or a similar drug treatment is that it won’t get worse…but then I read where some people develop more skin trouble after going ON those meds. How common is that?
Where do you get COCONUT OIL PILLS? I’m curious about this as a supplement…anyone else using it?
Funny you should just mention coconut oil pills. I don't where you can find them but I finished taking a tablespoon of coconut oil drizzled with a little honey - oh, it's fabulous tasting.
Coconut oil s incredible for a multitude of things. I get the pills at a health food store about24 miles east few here I live in Okla.
PsA. Never had Psoriasis. Pitted nails-yes. Now, Rheumy says Psoriasis on toe nails. He says that most times it's first psoriasis and then PsA, sometimes it's viseversa.
Cannot do coconut. 10 minutes of that yellow Listerine stuff dipping, and the flare lasts less.
Maplegirl, I’m trying to email you using the private message part of the site, but for some reason that page is “stuck” and I can’t use it any more. Can you send me a PM with an alternate email that I can contact you through my gmail address?
Thanks.
PS, sorry Gelita and Tiredofhurting and Liz for barging in on this thread.