Is it considered rude to scratch in public?  Or is it embarrassing to those around you if you do scratch?

We've moved into town from the countryside where there was a lot of privacy.  Our new house is not yet unpacked. We are laboring through this move, carrying heavy boxes, moving furniture, etc.  We had curtains open, window blinds open, neighbor houses surrounding us, sunlight shining in, and I reached both hands to my scalp and had a little scratching while standing and resting a moment.

"The neighbors will see you!" my partner exclaimed.

Huh?

That was the first indication I had from him that maybe my scratching is embarrassing to him.

What is the etiquette for scratching?

Are there different rules for scratching in public versus scratching in your own home?  I DO vacuum up any flakes I leave on the floor or chairs at home.  But I wonder, now, if my idle scratching within my home is unsettling to my partner and that he hasn't said anything, yet.

How do you cope with itching when you are with other people in general and with your intimate family in particular?

Bit random but has anybody experienced hair loss cause by their P? 

I have been clear of P for about 6 years on adlimumab and have recently had a breakout of guttate P after being ill for a few days. At the same time as the P coming back i developed a bald patch the size of a coin in my beard, this has grown to about the size of a tea bag.

Ive had a beard since i left school, this is doing my head in!

Regarding weight I totally agree. I think it's very personal and only matters if a person is happy. In my case I do know that I need to lose some weight to be healthier and happier.

I wasn't disagreeing with Caroline but was curious as to if there was any documented research that shows a correlation between psoriasis and being overweight. I've gained weight since being diagnosed and my psoriasis is better now and I currently am not on meds for psoriasis which is another reason I was curious.

I often have different opinions than others on some things, but that's all it is, an opinion. I'm the first person to say I don't know what I'm talking about.

Hi

I was diagnosed with guttate psoriasis in early childhood. I've been on loads of treatments over the last 20 years including topicals, light treatment and a short stint on cyclosporin. About 4 years ago I decided to stop all treatment for a while and see how my skin was, I changed my diet and lifestyle and worked on my stress levels which is a huge trigger for flare-ups. I've flared a couple of times a year since coming off treatment and always have a baseline level of active patches which I had just learnt to accept. I'm not particularly self-conscious about the appearance of my psoriasis so that helped me not worry so much about having a break from treatment. 

After catching covid in January I have been in a constant cycle of flaring up then my skin settles for a couple of days before flaring again. Over the last couple of weeks, I've had a HUGE flare-up, my skin is a mess and the patches are everywhere - on my face, in my ears on my scalp and everywhere else imaginable. I can't sleep and I'm struggling to concentrate on anything other than my skin, it really is horrid.

I am ready to try some treatment again but I want to start with topicals again rather than just being given a referral to dermatology straight away which has happened in the past.

I'm hoping someone has some advice on the best topicals to ask for so I can go to the GP armed with loads of information, I always found dovobet to be really effective, is this still an option? 

Any advice welcome on how to go back into treatment after such a long break. xx

I am 63 years old and have only had psoriasis for two years. It started in my face, but after a few weeks my whole body was covered with spots, bumps and flakes. Once the diagnosis was made, the search for a remedy that would adequately combat the symptoms began.
- Skilarence gave me severe diarrhea after a few months, so I couldn't continue with it.
- Methotrexate (MTX) had little effect on my psoriasis. Because the drug can be a heavy attack on the liver and other organs, the disadvantages outweighed the benefits.

Then the biologicals came into the picture.
- Hyrimoz adalimumab (an injection every two weeks) did work a bit, but my legs especially remained full of flaky spots.
- Ilumetri Tildrakizumab (an injection every three months) has made the psoriasis spots almost completely disappear in a few months. The starting injection was at the end of March 2022 and from April 2022 the injection must be repeated every three months. The effect on the psoriasis is excellent. I barely have any flaky spots. But...

HERE COMES MY QUESTION
In May 2022 I started experiencing joint pain in varying places. It often starts at the end of the afternoon or in the evening. Sometimes in an ankle, then in a finger, sometimes a whole hand or just one toe, shoulder, knee or elbow. Sometimes it is so intense that I can hardly walk or that the pain keeps me from sleeping. The pain is almost always gone the next day and the affected joint is still a bit stiff. Almost every day there is a joint that hurts at night.

Joint pain is not a known side effect of Ilumetri, but even a rheumatologist had no logical explanation and found it suspicious that these complaints only occur after starting this biological.
Because Ilumetri is a relatively new drug, this joint pain may still be missing from the list of possible side effects. 

I am curious if there are other patients who receive Ilumetri injections and have joint complaints.

Has anyone had psoriasis in their ear canal?  Did you also have an ear infection?  Not the outer ear, but the inside part a Q-Tip might reach?  Would you apply a little steroid ointment, using a Q-Tip?

Anyone here heard of or been on bimzelxs for psoriasis? About to start and keen to hear others experiences

The last dose of Methotrexate was on May 5, 2022.  The daily nausea side effect gradually worsened over the five months I tried the medicine.  My skin did mostly clear, though, leaving only very small patches and discoloration where the worst patches were, but it was mostly smooth and free of itch.

Gradually, the skin grew new patches with variable itchiness.  

I increased my dose of Humira (primarily used for Crohn's Disease since 2012) on June 9 to taking it every week rather than every other week.  

First off, I felt better, overall, quickly.  My breathing improved noticeably (I have Crohn's in my lungs as well as gut).  And my energy levels improved.  

My gastroenterologist and I came up with this plan to give weekly Humira a try, just in case it would help the rashes (or make them worse) before switching to something else.  Blood tests had shown the levels of Humira in my sample were barely inside the therapeutic range.  

I'll repeat a spirometry breathing test in August and consult with pulmonologist afterward to see if the breathing  improvement is in my imagination or verifiable.  So many doctor co-pays!  Sigh.

So . . . in the first couple of days after I take the weekly dose of Humira, the rashes look better.  They are mainly where I sweat while skating, lower legs and groin.  But they are nowhere near as wide spread and uncomfortable as they were before using Methotrexate.

I'm using a mild steroidal ointment only between a couple toes on each foot and only rarely.  I've used an over the counter hydrocortisone cream on the spots in my genital area a little more often but not daily.  If I use the steroid ointments later on, I'll be much more cautious because I believe they made the patches worse in the long run as I used them last year under the advice of the first dermatologist I saw (he was an arrogant man who did not give good advice for steroid usage).

My second dermatologist (she's very good!) is on maternity leave but will return soon. I have an appointment with her on August 2.

That's my update for now.  Thanks for reading.

Saw my dermatologist couple of weeks ago. He’s suggested going onto Apremilast. Methotrexate helped clear some of my p up but as soon as I went down to 22.5 mg more came back. Blood tests for methotrexate showed my liver (whatever it is they test it for!) was rising. After ultrasound and fibroscan it’s come back not related to methotrexate but NAFLD. Marvellous! Anyway, now waiting to see if they’ll prescribe Apremilast. Fingers crossed!

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?