Psoriasis Club

I am new here (obviously) and I am needing to talk to others who have psoriasis and can commiserate. I cannot say that this has ruined my life, but knowing how unsightly the flares are has put me under stress that I could easily live without. How do you keep your relationships together? How do you go out when you flare? What symptoms do you have with yours- I have fatigue and joint pain- doc says joint pain is pretty normal- and a pretty mild case, from what I have been told. "Only" had it for 5 years. Feels like forever.
Thanks for all of you who take the time to read this, and even more to those who reply.

Hello Angela,

Good morning (at least is is morning where I live) and welcome to Psoriasisclub.

I hope you will enjoy yourself with us. We are a friendly group of Psoriasis and Psoriatic Arthritis sufferers. With a broad range of problems, and luckily also some solutions that make living with Psoriasis better.

Soon, when the others are awake, some of them need a longer sleep, others will welcome you.

I can partially answer your questions, on my side it has been mostly the joint pain, the Psoriatic Arthritis (PsA) part. What your doc says: "Joint pain is pretty normal", is not true. It is a sign of PsA and about 10% of the Psoriasis sufferers will have PsA in the end. If it becomes too much you need to do something about it to prevent damage in your joints, as the joint pain refers to inflammation in your joints.

What kind of doc do you have? A dermatologist?

I have it for about 15 years now and have it mostly under control.

I think Fred will point you to the location where you can score your P and PsA which will give you an insight of the severeness.

Hope to see you around.

Caroline

Hi Angela, nice to meet you

I don't think it's terribly helpful to be told your symptoms are mild relative to other people - it's irrelevant really, what matters is how are you, are your symptoms affecting your daily life and can anything be done to alleviate them.

When I had carpal tunnel they did nerve tests and pronounced me a mild case. They agreed to do the op however. During the op the surgeon said to me 'have a look at this, your nerve is purple!' (I was too chicken to look, feeling a little bit faint lol ) and it turned out it was not a mild case after all. My point is, how can they accurately know how bad you feel anyway, they can only get a good idea. If psoriasis is getting in the way of life then maybe it's time to push for further help.

(Thu-18-05-2017, 08:01 AM)AngelaT Wrote: NO LINKS ALLOWEDI am new here (obviously) and I am needing to talk to others who have psoriasis and can commiserate. I cannot say that this has ruined my life, but knowing how unsightly the flares are has put me under stress that I could easily live without. How do you keep your relationships together? How do you go out when you flare? What symptoms do you have with yours- I have fatigue and joint pain- doc says joint pain is pretty normal- and a pretty mild case, from what I have been told. "Only" had it for 5 years. Feels like forever.
Thanks for all of you who take the time to read this, and even more to those who reply.

Hi Angela and a big welcome    to the club, I'm glad you have found us, as we are a very friendly safe forum to use. All the nembers are happy to share their experiences and it was good to see you introducing yourself on another new members thread.
I know what you mean when you say it hasn't ruined your life, but like me it has probably shaped your everyday life, most decisions from what to wear, dare I go to the hairdressers, to should I go to the beach. I don't know about your age and relationships but if you're single, it saps your self confidence ....Things others don't consider

As Caroline and Turnedlight have said, if you have joint pain as well as psoriasis. Get an appointment with a dermatologist and get a prescribed treatment ( depending where in the world you are) depending on the severity of your disease will depend on the treatment
You can check your psoriasis score ( not official) Pscore if you like
I look forward to hearing more from you soon

Hello Angela   to Psoriasis Club.

Yes you will find a good bunch of people who understand and willing to offer support. You can get to know them better in the [Group Specific] I'm the sensible on in there.

As for holding relationships together: I've been very lucky and been in a solid relationship with Mrs Fred for around 35 years now and 32 married this year. It has never bothered her and she has been very supportive, that's what relationships are about. If someone wants to judge a book by it's cover then for me that type of person is not worth knowing and I would remind them that they could be next.

Going out: This used to bother me in my younger days and did find it difficult, but I found the more I spoke about it and shared with family and friends my life became easier.

Symptoms: Over the years I have had a small bit of psoriasis and at one time was about 90% covered in it. For me though the psoriatic arthritis was the worse and it has gone from a mild pain in one thumb to full blown lock up where I was unable to move. There is no one suit fits all with psoriasis and psoriatic arthritis, we are all different and it's all about management.

5 Years is a short time and like you say at first it feels like it's been a lifetime. But it can be controlled and that is what you should be aiming for because you have it for the rest of your life.

You don't mention if you are seeing a dermatologist and going by your profile you're not treating it with anything viable, so I would suggest an appointment with a dermatologist. The sooner you get psoriatic arthritis treated (if that's what you have, your joint pain- doc isn't really saying much) the better.

Regards.

Fred.

Oh and where Jim said "psoriasis score ( not official)" he meant it's not what the dermatologist would use. But it is official on Psoriasis Club because I made it.

Angela

Goodness Galciers! I am a member of several forums for various things over my life- late 40's. However, I have never had a welcome like this anywhere. Thank you very much Grizzly Bear, Fred, jiml, Turnedlight, Caroline, and anyone else who read this. Your replies were more than welcome. They were warm, well thought out, and actually helpful. I appreciate the time you took to write. It is scary to me to know that this is something I will have to live with for the rest of my life. My husband of 25 years is very supportive, but our snuggling and cuddling has diminished since psoriasis. It is due to the fact that my skin is not soft and smooth. He feels self conscious about touching where the rash is, and he used to pet me like I was a big cat. Our relationship is still solid, but I miss being petted... Kinda selfish of me, but there it is.
Yeah, people looking at you as though you have cooties is no fun, grandbabies who shy away from you are no fun.
I do have a dermatologist, but all the medicines that are supposedly good for this are so darn scary- risk of cancer, risk of tuberculosis, risk of deadly infection... I think, at this point at least, that the treatment may be worse than the disease. I have an ugly rash. I do not have cancer or tuberculosis or a deadly infection. What do you all use, and what made you decide that the medicine was worth the risk?
Thanks!

Glad you feel welcome

It's complicated with hubbys isn't it, they are so worried about you that they do treat you a bit more delicately and have concerned looks when they see the rash..

I'm the same as you, I've only really had noticable P for about 5 years. In the end they get used to you as you are, though my hubby was pleased when I cleared recently on Stelara but I think it's more that if you look better then your brain tells you that you are 'better', and even though they know it might be temporary clearance, psoriasis hasn't actually gone away etc it's still a relief to see there are things you can do about it.

As for why you take the plunge with treatments - stamina I guess. I took mtx because I couldn't stand the itching, it worked for about a year, mostly clear skin. Then it stopped working. I tried another tablet which I couldn't get along with and decided to give it a break. I thought, psoriasis isn't as dangerous to me as the drugs, I wasn't that itchy, maybe I'd just live with it for a while.
However after a few months of my P increasing in severity, I ran out of steam and decided what the heck, I would try anything. I guess that is what leads people to take these things, they've just had enough!

However.. P is different for each of us and even different through our lives. It only came up when I was 18 and a course of steroid creams saw it off for about a decade. Even then I only had one patch on my body at any one time and I barely thought about it. So its only been a real issue for about five years and there's every chance that it might go into the background again for a while.

Good morning Angela,

I understand fully that the snuggling and cuddling part in your relation is very important and that it might suffer from your psoriasis. I at least hope that your husband realizes that Psoriasis is in no way contagious, but I guess he knows that.

There is a basically simple list of treatments, see below


By now you probably found out that in the end the creams, salt and light do not work anymore and they damage your skin.

Then there are the systemics of which personally I prefer the dimethylfumarates (DMF) as they are non-toxic and do not have a risk on cancer. If used well (and if they work for you) they can be used for many years. BUT... the dimethylfumarates for Psoriasis are not available in the US, and I think that is where you are , in the neighborhood of Houston, am I right?
If you live in Poland you can order DMF from e.g. the Netherlands, but doing that from the US, seems to be impossible.
They do have DMF in the US in use for the treatment of MS, it is called Tecfidera, but it is awfully expensive. There is a possibility that Almirall will soon come with a DMF form that may also become available in the US and is affordable.

Then there are the bio's. We have several, even many, members with good experiences on them. They are expensive but they work quickly and have good results.
Yes, there are warnings on the side effects, but I think that in your country they have to give these warnings because of the possibility that a company can be sued for anything, so they warn basically for everything. However there are only few cases of problems.

So that is the landscape, which is still widening.

I myself have been using DMF for a long time, but about a year ago I have changed to an experimental approach. You can read about that in my Journal. My journal will become available to you, as soon as you have posted 5 or 10 posts by yourself. As it is only meant for the real members that are sticking with us, and we all hope that you will.

Cheers,  
Caroline

Nice to hear you feel welcome. It means a lot to us to know Psoriasis Club is helping it's members.  

Yes it is scary to know you will have it for the rest of your life, but it can be managed and can sometimes go into remission. (But it will always pop up to say hello just when you don't want it) So it's best to accept it and get a treatment that works for you.

As for your husband finding it difficult. We have to try and look at it from the other side and although it's bad enough for us, our partners have to go through it not knowing the best way to approach us. So we need to help them understand and at the same time try not to burden them with the way it makes us feel. You can make a start by telling him to come here and read through some threads (He is also welcome to join if he wants to as we help family and friends too)

#1 Point him to these threads to start with:
Is Psoriasis Contagious?
Psoriasis Myths and History

#2 Keeping a solid relationship is important for both of you and it something we often get asked, here are few threads that others have written which may be of interest. (There are many more on the subject, if you have a specific problem put it in the Search or shout out and we will soon find something for you.
Helping your family cope with your psoriasis
Psoriasis, My Fiancé and Me
Psoriasis and Intimacy

#3 Next the good part: Get yourself a good quality virgin Coconut Oil and start using it twice daily your skin will soon start to feel smoother to touch. Then start getting your husband involved by asking him to rub some say on your back, if he's not keen to rub it on the psoriasis get him to rub it on a part where there is no psoriasis. You will find once he starts touching the psoriasis and noticing the effect it is having he will feel much more comfortable. Use your imagination, he may like a Coconut Oil massage too.  

As for having concerns about the treatments, that is understandable but the risk with nearly all the treatments is minimal and stopping will usually not leave any lasting damage. For me I went onto the Bio treatments as my life had become hell, it didn't bother me one bit about the possible problems as I thought my life couldn't be any worse. I did have some problems with my first tries and ended up in hospital with a reaction but they soon sorted me out and thanks to the Bio's I now have a brand new life and it's great.

Only you can make the choice and all treatments carry a risk of some sort (even natural treatments can cause problems) but is the slight risk of a regulated treatment better or worse than your and your husbands quality of life?

I say have look at these threads and go and discus your choice with your dermatologist.
Oral Treatments For Psoriasis
Biological Treatments For Psoriasis

Get your life back, it's worth it.