I do not understand what happened. I have had Psoriasis and Psoriatic Arthritis for several years now. I have the kind that is on the bottom of my feet as well the inverse kind. I take Simponi and Methotrexate.
Suddenly several months ago I had something on the side of my foot that had not been there before. I figured it was my psoriasis but is was scaly and itchy and yucky, no like the other break outs. I figured it would go away but it didn't. The area got larger and the itching got worse and started to bleed. Then one day this rash started to break out all over my body. The itching was horrendous. I finally called my derm but could not get in that day but the next. I went to the ER and ask for help because I felt sick and I could not take the itching and the pain. The doctor there said he did not know what it was and gave me a prescription antihistamine telling me they really only did head traumas and bad injuries.
In reading about this Psoriasis (Erythrodermic) I am understanding that I should have been checked out on the ER since it was coving my body and I was getting sick. I am just wanted to know if anyone has ever had this type of psoriasis and what did you do about it.
I haven't, Melinda, but I am on Simponi and having problems with psoriasis on my feet that is proving very difficult to resolve and sounds very similar. I am so sorry that you are suffering, it is so scary. In addition to telling your dermy I suggest you discuss with your rheumy as it may be you need a change of biologic.
Yeah, I have this at the moment. I didn't realise it could be dangerous. I wondered why the rheumy & derm were seeing me so often! I've not had any psoriasis worth mentioning for over 20 years. Prior to that it was mainly quite stable inverse i.e. it didn't go but it didn't spread either.
My rheumy thinks that taking me off Methotrexate back in January may have triggered it. Your post prompted me to google this type of psoriasis and one source said that withdrawal of systemic medicines may trigger it, so I am seriously hoping he's right. I am re-starting Mtx soon. Meanwhile, I just slather myself in steroid gel (which is an improvement on the cream) and go quietly, or not so quietly, mad.
All I can say is to ensure that your rheumy and dermy are on the case. Please get back to me, it sounds as if we're going through something very similar. There are people here who have dealt with this stuff for years but I think it is particularly difficult to get an angle on when it's a new thing.
Thank you both for your replies. The steroid cream did help as well as something called Triple Cream and Domeboro. Both of these are available over the counter. I really hope your itching stops soon. When I tried to describe how bad it was to the doctor I found that very few words could describe the intensity. It was worse than when I had chicken pox as a child. I did read that this is relatively rare so maybe there isn't a lot of information on it.
Its certainly true that a withdrawal from MTX can trigger any sort of P with a severe reaction. My Rheumatologist did include this in the information I was first given when starting MTX.
Eythrodermic P is an incredibly nasty form…I had it during both my pregnancies and its a nightmare and is considered a particularly inflammatory form. Hope you get more relief soon
What do your rheumy and derm say Melinda? Are there any options in the pipeline, such as a change of biologic perhaps?
I'm at the 'wait and see' stage, pending re-starting Mtx. I'm also on Humira. I think one thing I find especially frustrating is that when my PsA was at its worst, the thought of eventually getting on a biologic kept me going. But with this, I'm already of the flipping biologic. I've been feeling very confused about it .... my joint disease is really very well controlled ... so it seems wrong, somehow, to get so bent out of shape about skin disease. I also have big bald patches on my head, another autoimmune thing triggered by the severity of the psoriasis flare, they think. And that's not an easy thing to handle pyschologically either. I'm okay during the day, but come the evening when my legs go red all over & the itching comes to town big time, I'm nearly a basket case.
Much as I hate, hate, hate that you're going through it too, hearing how difficult you find it makes me feel less crazy.
One idea that I use to comfort myself ... which probably has no basis in fact whatsoever, is that perhaps the disease has to express itself somehow ... and that as the 'deeper' disease in the joints has calmed down, I'm now getting this horrible but more superficial form of it. I just like thinking that so I don't care if it's completely wrong.
Louise, how long did yours last? How bloody horrible having it whilst pregnant.
Melinda said:
Hi
Thank you both for your replies. The steroid cream did help as well as something called Triple Cream and Domeboro. Both of these are available over the counter. I really hope your itching stops soon. When I tried to describe how bad it was to the doctor I found that very few words could describe the intensity. It was worse than when I had chicken pox as a child. I did read that this is relatively rare so maybe there isn't a lot of information on it.
When I google 'erythrodermic psoriasis', the information invariably states that at least 80% of the body is covered. I'm not that bad though the only parts of me that are not affected are my face and neck and it spreads week on week. My rheumy's letter states: 'multiple erythematous scaly lesions'. I think I've confused 'erythematous' with 'erythrodermic'. Which is perhaps understandable.
Despite the dearth of accessible information, I gather that true erythrodermic psoriasis can be a medical emergency. So it does seem pretty bad that ER didn't know what they were dealing with. Though it would seem to be rare as you say, so I guess that explains their response, or lack of it.
From what you say, it sounds as if the generalised rash didn't last long, is that so? Do your rheumy / derm have any suggestions about what caused it?
I've been sitting in doctors' offices desperate for prescriptions and reassurance. Looks like it's time I asked some more specific questions!
Well the rash is still present in several areas on my body and it has been three weeks since I went to the doctor. My arms are still completely covered but there is no itching or pain. What is now concerning me is that the area on my foot is getting itchy and yucky again. This time I know to skip the ER.
I am really on the fence regarding the ER. They sent me a "How did we do" form and I mentioned that I thought the doctor should have made some effort to find out what was wrong with me. But it's water under the bridge now.
I would be interested in what your Rhemy says. Add it back in here if you find out :)
Thank you Melinda. You came here looking for support and information and ended up educating me! I think I'm getting there with what erythrodermic involves ..... very extensive coverage but also a red, inflamed background, like you get with other types of rash.
The classification of psoriasis certainly seems complex. I would not like to be a dermatologist but I'm picking up some key phrases, mainly 'try this steroid cream' ......
I am glad to hear that the itching and pain have gone. Yep, I can see the ER experience is behind you now. It's the same with Accident & Emergency here in UK, their job is to patch & dispatch unless someone's actually dying. But I'd want them to at least check out what they were dealing with before they prescribed.
My feet are a mess. This does seem to be a key area for heavy-duty scaling and itching. If I hear anything useful or relevant I'll come back with it. And if you have any more thoughts I'd be grateful if you'd add them. I expect other people will find your post useful too.
Hope your psoriasis is well under control very soon.
Melinda said:
Well the rash is still present in several areas on my body and it has been three weeks since I went to the doctor. My arms are still completely covered but there is no itching or pain. What is now concerning me is that the area on my foot is getting itchy and yucky again. This time I know to skip the ER.
I am really on the fence regarding the ER. They sent me a "How did we do" form and I mentioned that I thought the doctor should have made some effort to find out what was wrong with me. But it's water under the bridge now.
I would be interested in what your Rhemy says. Add it back in here if you find out :)