Feel like a hopeless mess

[random_person]

I've had eczema & psoriasis since childhood. There would be periods where I would have flare ups in small local areas. But over time and treatment with just creams , things improved.


Now 28 yrs old, and I seem to be experiencing the worst flare up ever. I feel hopeless and depressed-- feeling like I am in a stuck limbo. Symptoms seem to just snowball and get worse within Jan 2017 to present day. I have developed scalp psoriasis and never had it before, now i have rash area on my genitals.. so that is even more depressing. I have a never ending rash spot on my lower leg that skin never fully healed. It is red and scaly. I keep picking at the scales when they dry up because they annoy me, and I get stressed out. I've constantly been taking NSAIDs because of my recent new onset of joint/back pain. I don't know if the NSAID is making my psoriasis worse. 

What is frustrating is doctor appointments. Right now I don't have any real treatment medicAtions. I have a new patient appointment with dermatologist this June. And my primary doctor is going to refer me to a rheumatologist... but they told me that new patient appointments usually are made 6 months later. But no appointment set up at this time cause the referral process is slow. I feel miserable with uncertainty on what to do. My body feels like it is screaming on the inside

I'm just taking a ton of supplements but after 3 weeks, I don't know if I see significant improvement. Frustrating how this is a slow process and trial and error. Taking vitamin D3, oral coconut oil pill, apple cider vinegar oral drink, hemp oil (consumed), multivitamin, tumeric pill, trying epsom salt and Dead Sea salt baths. -___- alternating between over the counter creams and lotions. 

Been trying to change diet and eat healthier, less carbs, less junk food, more fish, lean chicken , fruits, nuts and veggies. I don't intend on drinking alcohol again -_-. I'm not a diabetic, not an alcoholic, I weight 98 lbs and not obese. 

I don't know what to do with my skin. I keep scratching and peeling the scales on my head and body off. Should I just stop trying to remove any skin flakes? -___- someone please tell me if I need to stop picking at them if I am making them worse. But I don't know if it is also good to let the skin cells accumulate so much on their own

[Caroline]

Hello 28-yearold, random person,



Welcome to Psoriasisclub. A club of sufferers, just like yourself.
A group of people who have gathered together quite some data on our common disease.

Reading your story I can imagine that you are feeling bad.

I think that most others here on the forum will, just like me, say to you: "Go to a dermatologist."
And in my opinion, you certainly should not go to a rheumatologist, who will absolutely will want to give you Methotrexate as a medication, and if you ever want to have healthy children, that is not what you want to swallow.

But a dermatologist has more options to give to you.
The NSAIDs at a certain point will not work for you, and if you have joint and back pain, that is an indication that your Psoriasis has been extended to Psoriatic Athritis.
In that case you should go on the systemics or biologicals.

Systemics are: Methotrexate (try to avoid that), cyclosporin, acetretin and Fumaderm (or dimethylfumarates, which I would prefer, as they will help for both P and PsA)
Biologicals are: Humira, Stelara, Taltz, Cosentyx (this last also preferable). Disadvantage of these are that they are expensive.
I see you live in "Somewhere", and I don't know what is available over there.
Be careful if you indeed have PsA, you really should do something about that, and the possibilities are there.

There is a lot of information on the forum, but I can imagine it will be difficult for you to find.
You can ask anything to us, and you always will get an answer.

So join in, all people over here are very nice.

Caroline

[Caroline]

When you visit a dermatologist/rheumatologist, it is important to know that giving a heavy "kick" to your disease may be of help.
Normally this should be done immediately after the Psoriasis has been diagnosed. But maybe in your case this could help in effectively control the Arthritis right at the start.

It is described in this article [thread=4881].

One thing remains important. Before you go to a dermatologist or rheumatologist, do prepare yourself very well, we can help you with that.  Set one or two goals for yourself that you want to achieve and keep tight to these goal(s) and take someone with you. E.g. Your husband, friend, brother, dad, mum.

Cheers,
Caroline.

[Bill]

Welcome RP,

Is there any reason you have to wait so long? Is there no way to have you triaged? Being kept waiting is all too common, so dont be bashful about being a squeaky wheel.

Hope you get some relief soon.

Bill

[jiml]

Hi there strange named person   to the club, you have found a great place to come for advice and support, here you will find a wealth of knowledge about the disease, I see you have already had some good advice and I can't add much more except look through the options that you would like to talk to a dermatologist about, so when you do meet with them you will know what they are talking about and be ready with questions if you disagree. Look at these options [forum=10]. You are likely to be started on creams unless as you say prescribed creams have failed , then you may be offered oral systemics which should give relief ...although as Caroline has said ....beware of them if considering having a family any time soon

You don't say where you are so it's difficult to advise on how to be seen by a dermatologist earlier ....if like me you were in the United Kingdom ..I would suggest getting your doctor to refer you as an urgent case, then I would make a nuisance of myself phoning the hospital and speaking to the dermatologists secretary, and plead for a speedy appointment .....tell them how it's affecting your everyday life, making you miserable, tell them that you are feeling extremely low.....if I were you I would plead and weep to get an appointment...

The problem is unless you get on the phone and tell them they think you have a couple of spots on your arm and there's no urgency....that's why I would advise making a nuisance to be seen....there are people ahead of you with appointments that are just like me, who have the disease under control, they could easily switch appointments with one of those if they wanted too ...

That's my two penneth added as an opinion .......oh and I think you will find we all pick and scratch our scabs off making ourselves bleed ....and save your money on expensive supplements get a good quality extra virgin coconut oil to stay moisturised

Jim  

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[Fred]

Hello random_person   to Psoriasis Club.

In my opinion NSAID are not goimg to help psoriasis and could actually make it worse. I see you say you have an appointment with dermatologist this June, that is the est way to go and they will work with you to find something to control it.

As you don't say what country you live in (and we respect your choice) it's difficult to give an idea of how your possible treatment will go, but usually it's in the order of.

#1 Creams.
#2 Light.
#2 Oral.
#4 Injection.

Like Jim said you can find a lot of information here [forum=10] but it depends on your healthcare system.

And Yes you need to stop picking it. That's next to impossible, but you're better off not picking it as you will damage the skin more.

Good luck with your appointment.

Regards.

Fred.

[Kat]

Welcome!

I don't have much to add. It will take getting to a doctor before getting treatment. Eating healthy, etc is certainly a good thing to do, some people have said that it has helped, others not so much.

Moisturizing (coconut oil is good) is helpful as it helps to keep the skin from getting dry which adds to the itching. Scratching is not good (I'm bad about that as well) but if you just have to scratch, try to more rub the area gently. Removing scales isn't bad, just be careful on how you do that. Scratching and pulling aren't the way to go, moisturizing can help remove them. Don't scrub away at them while in a bath either.

This group is great for answering questions and is helpful for information before discussing treatment with your doctor. Hope you get some relief soon!

[JohnB]

Hello Random   
There really isn't much more I could add they seemed to have covered it all. I would just say get back to your GP and explain in no uncertain terms just how badly this is effecting your life and ask for an earlier referal. Feel free to ask questions we will do our best to give you a reply based on experience. Don't forget the off topic area for some frivolous time .

[Grizzly Bear]

random

[random_person]

Thank you everyone for the welcome, support and sharing of advice and information.

So update... I managed to get a rheumatologist appointment sooner than I thought.  The doctor diagnosed me as having spondyloarthritis- a form of psoriatic arthritis that affects spine, pelvic joints and can be seen asymmetrically.  My hands and toes look fine, my left foot is swollen and sore though, upper back, neck and shoulders are in pain and stiffness. The doctor saw the huge rash on my leg and was concerned. She did not hesitate and went ahead to prescribe me a DMARD, sulfasalizine. She also ordered blood work tests. (but surprisingly didn't require a wait for results before prescribing the med).  The med was prescribed in that same single office visit, and i was able to pick it up two days later. ($0 copay).  The blood work results came back and it did reveal my c--reactive protein and ESR were highly elevated - indicating inflammation. I will have to wait 1-3 months to see if the medicine works or not.. My doctor told me that if sulfasalizine does not work, then we could jump into trying a biologic.

I told my parents of the news of my diagnosis and treatment plan. I was very afraid that they would "blame the victim" or start lecturing me about things I have already attempted or know.  Surprisingly they did not flip out as had imagined. I don't think they will understand the difficulty and discomfort that I truly go through. At the same time, I try to hide it from people.

I don't know what to think. It was a shock to me to think that I could end up having arthritis at such a young age. I worry about my ability to continue my work. I am glad I don't have to worry about not knowing about a diagnosis, but at the same time I have worries about my uncertain future.  I don't want to end up severely debilitated or wheelchair bound. I am afraid of the treatment medication causing me more harmful side effects that could be permanent or life threatening. At the same time, what can I do? If I do nothing, surely my joints will receive permanent damage if I don't attempt to slow down or stop the inflammation. I don't know if i can ever go back to the way I felt where I felt healthy and pain free....

Everyday seems more of a challenge waking up and getting tasks done. I am trying to make lifestyle changes regarding my diet. There are times where I feel tired where I want to lay in bed and sleep a lot, but I know being sedentary is going to hurt me more in the long run. This all sucks... but I guess it could be worse. -____-