Newly diagnosed with psoriasis or psoriatic arthritis? This can be a good place to start.
Shocked. Overwhelmed. Confused. Scared. Sad. Angry.
All of these words have been used by people explaining how they felt when they first heard they had psoriasis. (Similar words are used by those who hear a loved one has psoriasis or psoriatic arthritis.)
It’s normal. But the good news is: you can handle this, and you are not alone.
Doctors, scientists, and biotech and pharmaceutical companies have developed effective treatment options that can bring major relief to you and the other eight million Americans with psoriasis or psoriatic arthritis.
Others with psoriasis also have your back, via Facebook, Twitter, message boards, events around the country, and patient advocacy organizations including Psoriasis Cure Now.
In short, if you have psoriasis, be glad you were born when you were. When Ben Franklin had psoriasis (for real!), his treatments were poisonous pills (that he wisely stopped taking), plus long, warm baths. You have safe and effective, cutting-edge treatments available to help you. (A warm bath – try adding oatmeal powder – is still a good way to soften skin and reduce itch.)
What is Psoriasis?
Psoriasis (sore-EYE-a-sis) can first strike at any age, causing dry, painful skin lesions that itch, crack, and can bleed. While psoriasis is commonly considered a skin disease, it is actually an internal, immune system disorder that leads to inflammation inside the body and skin symptoms on the outside. It is not contagious. Fortunately, for most people with psoriasis, the disease is mild, and will stay mild. They might have patches of dry skin on their elbows or knees and be able to treat it with over-the-counter or prescription creams and lotions. Still, for millions of other Americans, psoriasis is a daily impediment, one that can negatively impact quality of life. Psoriasis can appear anywhere on the body. Psoriasis increases the likelihood of having other conditions and diseases, most commonly psoriatic arthritis, which eventually develops in about 30% of psoriasis patients, typically years after skin symptoms first appear. Psoriatic arthritis is a chronic, progressive disease that causes pain, swelling, and stiffness of the joints. The fingers, toes, and spine are common trouble spots. Changes in the nails are another hallmark of psoriatic arthritis, and fatigue is a frequent symptom. As with psoriasis, psoriatic arthritis can range from mild to severe. Psoriasis can be emotionally and psychologically challenging. The visible nature of psoriasis can interfere with intimacy and self-esteem. Psoriasis patients also have a higher incidence of depression, so you really need to take notice of your mood and get help if you feel down for a sustained period of time. Media and internet coverage of psoriasis focuses extensively (we would say excessively) on stress and diet as possible triggers. But that might reflect more a human need to make sense of the unknown, and the self-serving claims of nutritional supplement marketers, rather than scientific evidence, which suggests diet plays very little role. Genetics and other factors – like skin injury or strep throat – can play roles in triggering the disease.
Am I going to look and feel like this forever?
No! You are going to get treated and almost certainly improve. (Of course, since there is not yet a cure, psoriasis can return, even for someone who has cleared completely. But when that occurs, there are still other treatments that may work for you.)
First, a question: Did you receive a medical diagnosis, or did you or someone else diagnose you, perhaps after internet research? If the latter, you should make an appointment with your healthcare provider, or preferably, a dermatologist (skin doctor) for psoriasis, or a rheumatologist (joint / arthritis doctor) for psoriatic arthritis. The best way to manage psoriasis is to take it seriously and see a specialist to design your treatment plan. It is also helpful to educate yourself about your treatment options. This will let you participate with your physician in selecting the treatment most likely to work for you, and will put you back in charge of your life, rather than letting psoriasis dictate to you.
What are my treatment options?
While there is not yet a cure for psoriasis, treatments are now available that can help most patients achieve significant improvement, and even clear or nearly clear skin. This is an extraordinary development for the psoriasis community. For psoriatic arthritis, there are now treatments that can stop the progression of joint damage that can come from psoriatic arthritis. While no treatment works for everyone, the proliferation of treatments means that our community now has multiple options; and if one does not work, others often still do. Of course, each person’s psoriasis symptoms vary, as does our response to various treatments. There are no guarantees that a particular patient will get the response he or she desires. Still, the outlook has never been as bright. That is why our website is so insistent that you see a dermatologist, preferably one who sees many psoriasis patients (feel free to ask before you make your appointment). While in some parts of the country that may be difficult, in most urban areas there will be dermatologists who have significant experience treating psoriasis. Often, their websites will make clear that they consider psoriasis an important part of their practice. (Or equally worth noting, if the website is all about cosmetic dermatology rather than “medical” dermatology, you probably should look for a different dermatologist for your psoriasis treatment, if possible.) Read more on treating mild psoriasis
, or more on moderate to severe psoriasis and psoriatic arthritis treatments
What about other treatments that I hear about, like alternative methods?
For as long as anyone can remember, there have been people and companies promising psoriasis relief and cures via an endless array of potions, lotions, and diets. Since the emergence of the internet, these “cures” have proliferated, and now flood YouTube, Instagram, Facebook, and other message boards and social media outlets. There are simply not enough government regulators out there to possibly police all this. Our view is pretty blunt and politically incorrect in this age where the media breathlessly covers anyone who tells us everything wrong with us can be solved if we just eat this or don’t eat that, or rub this lotion here or that cream there: it’s hogwash. If this were 1960, when psoriasis treatments were extremely limited and very cumbersome, then sure, who could quarrel with trying out some cleverly marketed elixir or exotic diet? But here in the 21st century, we have real, scientifically tested, government regulated and US Food and Drug Administration (FDA) approved psoriasis and psoriatic treatments that have been studied on hundreds, and usually thousands, of patients for years, and at great expense, before being made available to you. They must not only work, but their safety must be tested to demonstrate that the benefits of the treatment outweigh the risks of side effects for appropriate patients as listed in the prescribing information. Again, Psoriasis Cure Now believes in taking psoriasis seriously and that means seeing a medical doctor and using the incredible advances being made in science and medicine to improve your health.
It is a deeply fundamental human desire to make sense of the world around us. People with psoriasis often ask “What did I do to cause my psoriasis?” and believe that they could have prevented it had they eaten or lived differently. This self-blame is a totally normal reaction, but is counter-productive, and not really based on science. You don’t control your genetic makeup or the inner workings of your immune system, and known psoriasis triggers like strep throats or skin injuries are simply features of life. After receiving a psoriasis diagnosis, it is better to focus forward on what treatments can help you feel better, and what lifestyle changes you can make to maximize your chances for the best possible outcome. People with psoriasis can become fixated on which (probably imaginary) dietary triggers they can identify, and then avoid, to reduce their psoriasis flares, even as they miss doses of their treatments or don’t follow their treatment plan. But faithful compliance with your treatment plan is a far better strategy to reduce psoriasis symptoms than searching for something you are supposedly doing wrong. That said, smoking, excessive alcohol consumption, and obesity do appear, for some, to make psoriasis symptoms worse or to instigate psoriasis flares; so working on those issues can be helpful. Beyond that, basic healthful living, like getting enough sleep and exercise, are good ways to support your best option, which is to follow your treatment plan and follow up with your physician to try something else if the plan is not working.
My psoriasis is visible: How am I ever going to leave the house again?
Psoriasis, particularly if it develops on visible or sensitive areas of the body – such as the face, hands, arms, feet, or genitals – can seriously damage a person’s emotional and psychological well-being. Children, adolescents, and those dating can take it particularly hard, with feelings of embarrassment, shame, depression, and despair, fearing possible negative reactions from people. Those fears and emotions are perfectly natural, and professional counseling can help you process those negative thoughts. Seeking support from others with psoriasis or other skin diseases is also helpful, as we all have stories of realizing that we were far more fixated on our psoriasis than people we were encountering or dating. Still, we do not want to dismiss the hurt that is caused when someone says a rude or uneducated remark about your psoriasis. That pain is real. We would suggest a polite, factual explanation about your noncontagious psoriasis being driven by your immune system, which is often helpful in defusing the situation, as most normal human beings will quickly realize their mistake and apologize. Children can also give us a refreshing way of looking at things. One father with severe psoriasis reports that after starting a new psoriasis treatment and going into full remission, his child remarked, “Dad, you look weird without your psoriasis.” One of our missions at Psoriasis Cure Now is to educate the general public about psoriasis, since once educated about it, people’s odd comments subside. It seems the mystery surrounding psoriasis was what used to cause most of the problems. We are happy to report that anecdotally, it appears that unkind remarks directed towards people with psoriasis are becoming less common. The body-positive movement for psoriasis patients and others is helping this process along. Three cheers for that. And as effective treatments continue to reach more patients, this issue should fade as our psoriasis patches fade.
A note to parents of children with psoriasis
Parental guilt is a common reaction to having a child who develops psoriasis. No parent wants to see their child uncomfortable, or itchy, or embarrassed about how he or she looks. Add to that stress the discussion of “genetic susceptibility” to psoriasis and it’s perfectly understandable that parents would take it hard. But it’s not a good direction in which to head. Psoriasis is a “multifactorial” disorder, influenced by both genetic and environmental factors, most of which are out of our control, and many of which scientists have still not even identified. So blaming yourself doesn’t really make sense. Instead, use this frustrating and worrisome development to help your child learn resilience, and empower your child by making her or him an active participant in their treatment plan. You can educate yourselves about psoriasis together, have your child come up with some questions to ask at a doctor visit, and perhaps spark inspiration in your child to study science with an eye to curing the disease as a grownup. The good news is that as with adults, lots of childhood psoriasis is mild, and can be treated safely and effectively with topical ointments, and sometimes just time in the sun (without sunburn). But we don’t want to sugarcoat things: psoriasis can also be extremely difficult for some children (as for adults). It can be harder for children due to peer pressure, bullying, and fragile self-esteem. Plus, for children whose psoriasis is moderate or severe, treatment decisions can prove tricky. Most of the leading psoriasis treatments are not FDA-approved for minors. They can be prescribed “off-label” by physicians for your child, but that can sometimes pose insurance reimbursement issues, and it means that research on children for that treatment is very limited and thus safety in that age group has not been formally established. There is also the question of whether to “undertreat” a child’s psoriasis to spare the child possible side effects from some treatments, versus treating it aggressively to spare the child the physical and emotional pain of living with psoriasis, particularly if it is visible. We urge you, if at all possible, particularly when dealing with a child with psoriasis, to seek a dermatologist who has treated other children with psoriasis. Fortunately, the long-term prognosis for children with psoriasis is truly bright. It just may be a bumpy road along the way. Two more things, parents: it is important to keep an eye on the mental health of children with psoriasis, as mood disorders like depression and anxiety can be present along with or at some point following a psoriasis diagnosis. And you should also be willing to seek professional counseling or the advice of a physician if your child’s battle with psoriasis is adversely affecting your mood on a continuing basis.
Are the treatments truly safe? Those warning labels are a mile long!
This is a vitally important question, and the following answer is for those with moderate to severe psoriasis, not for those whose mild psoriasis can be managed rather safely and easily. Because psoriasis stems from a malfunction in the immune system, the latest treatments work by targeting pieces of the immune system. But the immune system plays an essential role, protecting us from bacterial and viral infections, as well as cancerous cells and other threats to our health. So there is a danger that in seeking to reverse processes causing psoriasis symptoms, treatments could weaken the protective function of the immune system. The good news is that 21st century psoriasis and psoriatic arthritis treatments are designed to target limited components of the immune system to stop psoriasis without more broadly impairing the immune system. That being said, these treatments do tend to carry warnings about increased risks of serious infections and some cancers. Others also increase the risk of depression or inflammatory bowel disease. Simply put, these treatments are not to be taken lightly. But those who have serious problems while on these treatments often have other, serious pre-existing health issues; and if careful pre-screening is done – for example, doing a TB test before starting a new treatment, or consulting a cancer specialist before putting someone with a past history of cancer on a psoriasis treatment – then the risks can be well-managed. Some people on these treatments have had serious health issues emerge, and some people have died while on them. It is not always clear what actually caused the crisis, but it’s fair to say that the treatments themselves sometimes contribute to these tragedies. We don’t want to unjustly minimize these risks. But in consultation with your physician you can discuss the costs versus the benefits and make a decision that works for you. And remember (we are making up these figures just to explain this point): hearing that a treatment tripled the risk of a serious side effect would sound scary - it triples the risk! But if the original risk was one serious side effect for every three million people, that means the tripled risk from the treatment in our fictional example would be only one serious issue for every one million people - nothing to lose sleep over. That is why you need to discuss actual risks with your doctor before starting a treatment, so you can decide how much risk you are willing to bear to possibly be free of psoriasis symptoms. There are now patients who have been on some of these treatments for 10, 15, and even 20 years, without worrisome problems. Given that psoriasis is a lifelong disease, it is essential that treatments can be taken safely not just for years, but for decades. The safety outlook for these treatments is improving over time, not getting worse, and that should give us all a measure of comfort.
Will my child inherit psoriasis from me?
According to a well-respected study of the issue, your child would have roughly a 30% chance of getting psoriasis at some point in life, if one parent has psoriasis. If both parents have psoriasis, the chance increases to almost two-thirds. Given the compassion psoriasis patients learn from living with this disease, we’d say your child is lucky to have you as a parent; and in any event, with current and emerging treatments, the prognosis for children with psoriasis is very bright.
What other tips can you share?
Plenty of patient-to-patient ideas are offered throughout this website, but we will mention just a few here for those recently diagnosed to keep in mind. Comply with your treatments. Studies show that in many cases where treatments “fail” to work, the patient has been lax about adhering to the treatment schedule or following all the procedures set out by the physician. Give yourself the best chance for success by complying with your treatment regimen, and alerting your physician as soon as possible if you are not able to stick to it for any reason. Keep trying. As we said before, while no treatment seems to work adequately for everyone, the vast majority of people are now able to find a treatment that offers them substantial relief. So if a treatment fails, try something else. And if you lose faith in your dermatologist or rheumatologist, try a different one. Tell your physician your treatment goals. “I just want psoriasis off my face and hands.” “I need the horrible itching to go away.” “I want to be completely clear!” “I want to have as little psoriasis as possible for my wedding.” “I want my psoriatic arthritis controlled so I can wrestle with my children.” “I don’t want to be sad every day anymore.” Be clear about your priorities, as that will help select the appropriate treatment, and allows the physician to be candid with you about your chances to achieve your treatment goals. Stay moisturized; avoid sunburn; try to limit harsh scratching as much as possible. As varied as psoriasis can be, some “truths” seem universal. These are three of them. Finally: Don’t lose hope. Seek support from loved ones, and from other people with psoriasis. Brighter days are ahead.
Will there ever be a cure?
At the rate the science is advancing, we believe a cure will happen. More research funding could speed that day. In the meantime, there are interim goals that could help us all, including: continued improvements in treatment safety, effectiveness, and duration of effectiveness; as well as insurance and pharmaceutical industry policies to make these treatments accessible to all.
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