Haven’t posted for a looooooooong time!!

I’ve been successfully using adalimumab (humira first then a different brand for the last couple of years) for about 5 years and been pretty much completely clear, however the last couple of months I have started to show a rash all over my chest/shoulders/back.

It’s not the same as the P I had before Humira, it is flat, not itching, no dryness just smooth red blotches of skin. Could this be a different form of P?? Could it be that it’s time to change my treatment??

Feeling a bit apprehensive!!

Just wondering.  This is my hand.  And my fingernail with a little pitting.  

I was diagnosed with Ps 2 years ago but I've had PsA for a decade. I have had sporadic issues with depression long before I had this disease so I can't blame everything on Ps! I know what standard depression feels like and this feels different. It hits me like a ton of bricks then it goes away after 10 days or 2 weeks. That isn't, in my experience, how depression works. If I get on antidepressants, by the time they kick in, I feel better. I don't think I have what most shrinks wound consider your run off the mill depression. Has anyone experienced anything like this or is it unique to me? I started a journal to try and pinpoint how and why, but it will likely take a while for me to see a pattern.

I just want some advice from someone who knows what I'm going through. I don't want to divulge much more info on here than I already have so a pm would be better.

Hi - 


Newbie here, hello everyone.



After suffering from psoriasis for >30 years I have yet another consultant appointment this week. I have been using Enstilar effectively over the last year or so which does help but I have so many patches its becoming unmanageable (plus it makes me feel like I could swim the channel I'm so greasy).



I've had light treatment several times which has been effective but the psoriasis returns quite quickly afterwards.



My guess is that I will get offered Methotrexate from the consultant but I really want to avoid having to take it, with all the known side effects and lifestyle modifications. There are some much newer, more effective treatments that I would like to try. I wondered if anyone else has had a similar situation or suggestions on how to drive the discussions. 


Thanks for reading.

I'm new to forum so first of all, hello all! 

I was on Otezla for 2 years and then got on Tremfya 3 months ago. Tremfya was basically as effective as an injection of saline so I'm back on Otezla which does a decent job but not fantastic. Any advice or recommendations?

This months poll above asks: What effect has Exercise had on your psoriasis and/or psoriatic arthritis ?

Voting is open to members and guests and our members can also leave a comment if they wish.

I learned the hard way this week.  No matter that I keep the shower stall clean, using a squeegee on the walls and floors, drying with a cloth after showering.  Each time I shower, the moisturizer creams or the coconut oil makes the shower stall floor slick.

I'd forgotten my razor on the bathroom counter and turned off the shower's flow, quickly stepped out of shower to fetch the razor, quickly hopped back into the shower stall to shave my legs.  A sudden loss of balance and nothing to be done for it.

I fell against the stall's built-in bench, striking my side between my ribs and hip on Tuesday.  I was temporarily immobilized by pain and could only call out in agony.  My partner rushed in, assessed the crisis, covered me with a towel, and sat on the floor nearby until I could move.  

The rest of Tuesday was pained with little mobility.  I slept sitting up.  On Wednesday, a trip to "same day" care for doctor and x-rays took three hours.  But nothing was broken. Kidney is okay.  Heart is okay.  I got prescriptions for Tramadol and Lidocaine Patches.  

I'm resting and hoping to be able to work on Saturday.  

So this is my warning to not try gymnastics in the shower or bath if you are also using moisturizers and/or coconut oil.  (And it's my appeal for sympathy since it still hurts, even though it's 70% better than Tuesday.)

I have to say it’s the best one I’ve seen or been in, it’s easy to navigate and welcoming.
I like the non psoriasis boards a lot too, because although at times psoriasis can be a bit all consuming when you are itchy, sore or whatever, there’s much more to life and it really gives shape to those who take part. If it were just about the P I would probably only pop in occasionally.
I wouldn’t feel comfortable giving the information I give here on other forums but I am very happy with Fred’s approach and I know he and others are keeping watch on it all.

In fact the question is: “Why has Psoriasisclub the nature that we see?”

I think there are a lot of factors that play a role in the nature of Psoriasisclub.
I visit other forums some times, of many kinds and types, e.g. photography, motorcycles, sometimes a technical forum though they are hard to understand, etcetera.
They are mostly helpful also, but have a different atmosphere.

Sometimes I visit facebook psoriasis sites, facebook is kind of a fehtherlight streaming forum with a very low span of attention. And over there I read a lot of nonsense and weird idea on psoriasis. There is a forum of the dutch association, where I sometimes post. They are reasonably good, but there is not so much activity.

So that winds back to partly what Forest said about psoriasisclub concerning adverts and integrity. But there is more to psoriasisclub.
There is knowledge and experience over here. The members together have gathered immense experience, without forcing that experience to others. They tell other members with questions about their personal experiences with medication or show the way to members that do have experience.
It is a factor that is greatly missed by industry. Yes there is scientific research and statistical proof, but to gain real insight you must dive in to personal experiences.

The strong point is that psoriasisclub is grown into a group of knowledged and friendly friends, spread out over the world, who have never met each other, mostly have never seen each other, but still are friends.

The club has, thanks to Fred, a number of simple rules where above all the rule is to respect each other, and for some reason that really works very well with psoriasisclub.

The club also thanks to Fred, has always the newest news facts about psoriasis and Psoriatic Arthritis. I have never seen that anywhere else. I even know that e.g. in the netherlands the medical inspections has the weird philosophy that this kind of news should not given to patient as not to give them too much hope. Now that is a weird philosophy.

The club also has a lot of humour and interesse in each other’s life outside the psoriasis life. Half of what is posted is not about psoriasis but about a lot of other things in life, where we all have our opinions about, sometimes very different and the way that we discuss that has already learnt me lot of things and sometimes changed my view to things that I was sure of.

And last but not least the club has a great Staff… Kind of weird combination… a cow girl from the States, a fossil seeking gentleman from England, an English speaking hermit living unfindable in the country of France and a Dutch motorcycle girl dancing through life.

But…. It all works. and I bet this is not all that can be said about psoriasisclub.

I'm just going to whine.  The nausea and headaches with oral MTX are bugging me.  I'm seeing my dermatologist on Tuesday and will ask about switching to the injectable, as Dave recommended.  But I also miss sharing a glass of wine with my partner.  And I would like to enjoy a bourbon, now and then.  

The MTX has been working, though.  But the nausea and headaches are not so fun.  Possibly, the headaches would persist with the injectable form, even if the nausea abates.  

I'm going to read up on Interleukins and try to understand them.  My gastroenterologist said that Stelara works for both Crohn's and Psoriasis.  Humira targets TNF-alpha, not the interleukins.  

I'm grateful for the information on these various medications in Psoriasis Club.

Some of us have had psoriasis since childhood, some got it/ realised they had it later on in life.

But can you remember if you knew what it was and were more than vaguely aware of psoriasis before you had it?

This months poll above asks: What effect has Food had on your psoriasis and/or psoriatic arthritis ?

Voting is open to members and guests, you can choose more than one option and our members can also leave a comment if they wish.

I have a bad flare up after stopping Simponi (too much skin cancer to manage). I am sooooooo fatigued and wonder if that is caused by the flare up or the general state of the world. 

Do others experience exhaustion with a flare up? 

J

Glad to find this forum. I recently moved to Oregon and the care protocol is very different than where I lived in California. Here I am seen by a physician’s assistant only. Besides seeing patients for diseases of the skin, the office sees a lot of clients for Botox, cellulite treatment and who knows what else (I delete the ads they send me.)

After being on Simponi for probably 8 years, I started getting a lot of skin cancer ( new ones popping up weekly) and had to have surgery on spots on my legs 4 times in 3 months. My new rheumatologist said that increased skin cancer was a side effect of Simponi. I stopped the Simponi in December and have fewer incidence of skin cancer already (only planning two surgeries next month!)

However, my psoriasis has flared with a vengeance. I have it all over, including places that I haven’t ever had it (in 45 years with PA). Interestingly my psoriatic arthritis hasn’t flares without Simponi.

My dermatologist Physician’s assistant suggested Skyrizi and asked me to consult with my rheumatologist. (In California, the doctors would have talked directly to come up with a plan…)

My rheumatologist said that Skyrizi wasn’t authorized for PA and suggested Otezla, telling me to discuss with my dermatologist. I decided to try Skyrizi but the dermatologist says now it wouldn’t be appropriate since I have PA. (Huh? I wouldn’t have known of the drug if he hadn’t mentioned it). He said we will talk in a month. 

I am frustrated, itching and moisturizing constantly. Daily new spots appear. 

I’d like to see a doctor who specializes in psoriasis and skin cancers. Does anyone know of a dermatologist near Ashland or Medford Oregon? I looked at the USA psoriasis site and one doctor is listed. Haven’t heard of her or her practice group, but I’ll call tomorrow to see what her focus is.

Sorry for the long —and whiny— intro. But, I know you guys get it. Thanks.

I thought it would be interesting to get some history from our members about their psoriasis.

Copy and paste the questions and add your answers. *You can also add other comments and replies if you wish and leave questions blank if you don't want to share.

#1 What age did you think something was going wrong:

#2 How many years later was it that you got a diagnoses:

#3 When you got a diagnoses how did it make you feel:

#4 What was your first treatment:

#5 Did you think it was a temporary thing:

#6 How long before you got to see a dermatologist:

#7 What did you think of your first dermatologist:

#8 Have you ever given up on a prescribed treatment:

#9 How do you feel you are being treated today:

#10 What would you say to the younger you at #1:

So I know that those red scaly patches itch. And I know moisturizing helps. I know scratching is to be avoided if at all possible. BUT... I admit that I scratch way more often than I should. So I was wondering, what do you do to ignore that itch??

I've found I can refrain from scratching if I'm out in public or around people, at least not that satisfying digging in scratching. Although there have been times I've excused myself to go find a secluded spot to scratch.

I've also found that with scalp psoriasis I can go outside in the sun and since I have long hair I can shake my head and watch the specks that fall shimmer in the sunlight as they blow away, a bit like a snow globe! I'm easily amused at times. But that only lasts a few seconds so isn't really helpful. Actually it might even be a little bit weird.

So how do you ignore the itch?

This months poll above asks: What effect has Alcohol had on your psoriasis and/or psoriatic arthritis ?

Voting is open to members and guests, our members can also leave a comment if they wish.

Around January 2021, a persistent but calm and subtle rash on my ankle bloomed into a troublesome, painful, patch.  A primary care doctor referred me to a dermatologist who took two punch biopsies.  

Before I found Psoriasis Club:

This first dermatologist told me incorrect information regarding Humira and Psoriasis.  He prescribed Betamethasone 0.05% for the legs, a similar formula lotion for the scalp, and Desonide Ointment 0.05% for sensitive areas and skin folds.   

His manner was arrogant and rushed.  He provided little information.  Patches continued to spread upon my lower legs and appear on my torso, arms, genitals, and more across my scalp.

I finally searched for support online when my fingertips and the insteps of my feet began bleeding.  I had developed thinning skin from the topical steroids.

When I found Psoriasis Club:

I learned about overusing topical steroids.  I learned about different medical therapies.  I read that a couple members had managed their skin through diet alone.   This club offered me information that the first dermatologist failed to provide.  This club inspired me to find a better doctor.  

While the dietary changes didn't affect my skin, I did reduce my sugar intake significantly and feel better for it, overall.  I rely less on wheats, also.  My overall diet has improved.  

My current dermatologist: 

I'm receiving good, compassionate, intelligent care, now.  My current dermatologist has provided information on how to use topical steroids, changed the ointments, added a Vitamin D derivative, provided a schedule for usage.  She's offered light therapy, Methotrexate, and Folic Acid.  She provided printed information on this condition and assurance that there are other medications to try.  

Best of all:

I understood the options discussed by this doctor because I read about prescribed treatments here.  Psoriasis Club has helped me to be informed about my condition and the treatments.  

I'm finally, finally, finally . . . finally! . . . feeling some relief.

On this last day of 2021, I feel contemplative, looking back over the year.  I'm hopeful, looking forward to skin improvement and the continued sense of belonging in a community of patchy people from all around the world here at Psoriasis Club.

Rinvoq (upadacitinib) is an Oral prescription medicine approved for the treatment of patients with psoriatic arthritis.

Dosage: The recommended dose is 15 mg once daily with or without food. Do not split, break, crush, or chew the tablet.

Tell your HCP (doctor) if you:

• Are being treated for an infection, have an infection that won’t go away or keeps coming back, or have symptoms of an infection, such as:
  
• Fever, sweating, or chills
  
• Shortness of breath
  
• Warm, red, or painful skin or sores on your body
  
• Muscle aches
  
• Feeling tired
  
• Blood in phlegm
  
• Diarrhoea or stomach pain
  
• Cough
  
• Weight loss
  
• Burning when urinating or urinating more often than normal
  
• Have TB or have been in close contact with someone with TB.
  
• Are a current or past smoker.
  
• Have had a heart attack, other heart problems, or stroke.
  
• Have had any type of cancer, hepatitis B or C, shingles (herpes zoster), blood clots in the veins of your legs or lungs, diverticulitis (inflammation in parts of the large intestine), or ulcers in your stomach or intestines.
  
• Have other medical conditions, including liver problems, low blood cell counts, diabetes, chronic lung disease, HIV, or a weak immune system.
  
• Live, have lived, or have travelled to parts of the country, such as the Ohio and Mississippi River valleys and the Southwest, that increase your risk of getting certain kinds of fungal infections. If you are unsure if you've been to these types of areas, ask your HCP.
  
• Have recently received or are scheduled to receive a vaccine. People who take Rinvoq should not receive live vaccines.
  
• Are pregnant or plan to become pregnant. Based on animal studies, Rinvoq may harm your unborn baby. Your HCP will check whether or not you are pregnant before you start Rinvoq. You should use effective birth control (contraception) to avoid becoming pregnant while taking Rinvoq and for at least 4 weeks after your last dose.
  
• Are breastfeeding or plan to breastfeed. Rinvoq may pass into your breast milk. You should not breastfeed while taking Rinvoq and for at least 6 days after your last dose.
  

• Medicines for fungal or bacterial infections
  
• Rifampicin or phenytoin
  
• Medicines that affect your immune system
  

• Serious infections. Rinvoq can lower your ability to fight infections. Serious infections have happened while taking Rinvoq, including tuberculosis (TB) and infections caused by bacteria, fungi, or viruses that can spread throughout the body. Some people have died from these infections. Your healthcare provider (HCP) should test you for TB before starting Rinvoq and check you closely for signs and symptoms of TB during treatment with Rinvoq. You should not start taking Rinvoq if you have any kind of infection unless your HCP tells you it is okay. You may be at higher risk of developing shingles (herpes zoster).
  
• Increased risk of death in people 50 years and older who have at least 1 heart disease (cardiovascular) risk factor.
  
• Cancer and immune system problems. Rinvoq may increase your risk of certain cancers. Lymphoma and other cancers, including skin cancers, can happen. Current or past smokers are at higher risk of certain cancers, including lymphoma and lung cancer.
  
• Increased risk of major cardiovascular (CV) events, such as heart attack, stroke, or death, in people 50 years and older who have at least 1 heart disease (CV) risk factor, especially if you are a current or past smoker.
  
• Blood clots. Blood clots in the veins of the legs or lungs and arteries can happen with Rinvoq. This may be life-threatening and cause death. Blood clots in the veins of the legs and lungs have happened more often in people who are 50 years and older and with at least 1 heart disease (CV) risk factor.[
  
• Tears in the stomach or intestines and changes in certain laboratory tests. Your HCP should do blood tests before you start taking Rinvoq and while you take it. Your HCP may stop your Rinvoq treatment for a period of time if needed because of changes in these blood test results.
  

• Tell your HCP right away if you have any symptoms of an infection. Rinvoq can make you more likely to get infections or make any infections you have worse.
  
• Get emergency help right away if you have any symptoms of a heart attack or stroke while taking Rinvoq, including:
  • Discomfort in the centre of your chest that lasts for more than a few minutes or that goes away and comes back
    
  • Severe tightness, pain, pressure, or heaviness in your chest, throat, neck, or jaw
    
  • Pain or discomfort in your arms, back, neck, jaw, or stomach
    
  • Shortness of breath with or without chest discomfort
    
  • Breaking out in a cold sweat
    
  • Nausea or vomiting
    
  • Feeling light-headed
    
  • Weakness in one part or on one side of your body
    
  • Slurred speech
    
• Tell your HCP right away if you have any signs or symptoms of blood clots during treatment with Rinvoq, including:
  • Swelling
    
  • Pain or tenderness in the leg
    
  • Sudden unexplained chest pain
    
  • Shortness of breath
    
• Tell your HCP right away if you have a fever or stomach-area pain that does not go away, and a change in your bowel habits.
  

Hi i seem to have treatment resistant psoriasis. I had it in a couple of small patches- on on my neck and the other would develop related to certain underarm spray, whilst I was in my early twenties. It was mild and did not bother me and the creams seemed to keep it at bay. It was only 5 years ago it flard up big time. I have it all over my body except my face. I tried Acitretin for 18 months and that did not help. It just made my hair fall out. So now I am starting light therapy tomorrow. I hope it works. I would like to hear from anyone else who has had this and what their experiences are. Also, my self esteem is totally gone as I