I have been cursed with Psoriasis

[mataribot]

Hello how is everyone tonight? Me, I am just blah. I am tired of my Psoriasis, just like everyone else on this forum probably is. I am new to this forum, so here is a bit about myself:

I am 33 and had Plaque and Inverse Psoriasis since I was a kid and was official diagnosed in 2003. Also, I have had pain in my hip and hands/fingers since I was a kid. I have not been diagnosed with PsA or RA as of yet. For my P, I have tried the following laundry list of medications: Cellcept, Enbrel, Methotrexate, Humira, Soriatane, and now Stelara and Celebrex.

Stelara has been the best so far; I am approximately 85% clearance without any visible inflammation after three shots. However, my hips and hands/fingers still hurt considerably. My Dermatologist thinks I could have PsA, and recommended that I see a Rheumatologist. My new Rheumatologist mentioned the M word (methotrexate; a curse word to me) 31 times during the visit. I had some blood work done (no results yet), and eight x-rays.

For the most part, I can live with the pain in my hip and hand/finders, but now I have stiffness and fatigue every morning (feels like I beat myself up in the gym for the first time in a long time). The stiffness and fatigue came directly after I stopped Humira (Humira cause my P to flare). I am sorry for the wall of text. I am a HTFU type of guy, but for the first time in my life I just want to cry. I hate this curse! I am thinking about giving up Stelara, but is there anything else left? Any suggestions?

[Caroline]

Hello Mataribot (what a name!),

to the board, hope you will have a nice time here and some nice discussions, and perhaps some help.

How everyone is? I don't know, it may differ, but I am at least fine.
I recognize your problems in the joints, large chance that that is PsA. I also am with you in the disgust on MTX. Keep to your opinion with your doctor, it's pure poison.
For Stelara you must be with Fred, he knows a lot about that subject.

Is there anything else left, you ask? Yes there are, unfortunately not available in your country, at least not the cheap and effective version.
Surf the forum and check my posts for more information.
While surfing beware of armed chicken and motorcycles.

Caroline

[Fred]

But for the first time in my life I just want to cry. I hate this curse!

Just let it out if you need to, I think you will find most of us have cried because of psoriasis I certainly have. But if you can get yourself in a positive mood you will find it a huge help. First off don't look on it as a curse, It's not a curse. It's just something that can ruin your life if you let it.

I am thinking about giving up Stelara, but is there anything else left? Any suggestions?

Sounds like you have tried most things so options are running out, but there is lots of new stuff on the horizon, check out my threads with this image

Going back to Stelara I have been on it for over 3 years now and it's the best thing I've ever found. I have bad PsA and Stelara has and still does help me with it. I don't want to pry on your life but if it helps, I'm 100Kg and one 45mg shot every 12 weeks stopped working for me. I went on to 90mg but It made me fell like a zombie, so I played with the dose for a while and have found 1 shot of 45mg every 8 weeks is perfect for me.

I'm also with you and Caroline about Methotrexate, my dermatologist has always hinted at using it but I refused and always will. That's how we got to the stage of playing around with the Stelara dose, so it could be worth a go.

And on another positive note as Caroline has hinted at Psoriasis Club you can watch chickens shooting bikers.

Take care mate, and sorry for late reply but it's the time difference.

Regards.

Fred.

[mataribot]

Thanks for the replies

MTX was a horrible drug for me. Every time I took it, I spent the next few days hunched over the toilet. I couldn't sleep; I still have difficulty sleeping until this day. I didn't receive much clearance either. My old derm said I was not on it long enough to see any real benifits.

Fred - it's hard to remain postive. My wife and I get into arguments all time now over medical bills. We have not had fun in the last eight months. I have an endless cycle of yeast and psoriasis. Every three or four months the area around my eyes flare up. My boss told me not bother comming to work looking like count dracula.

As far as the stelara goes, it last about a month and half before I start to itch all over. Psoriasis flares up, but goes away very quickly. Benadryl is the only thing that works for the itch, but it makes my eyes worse.

[Fred]

Fred - it's hard to remain postive. My wife and I get into arguments all time now over medical bills. We have not had fun in the last eight months. I have an endless cycle of yeast and psoriasis.

Yes I'm sorry I know it's difficult, but it does help. Try doing something different with your wife, maybe a 15 minute walk in the park together and promise each other you won't talk about problems whilst in the park.

Every three or four months the area around my eyes flare up. My boss told me not bother comming to work looking like count dracula.

A person with that attitude is a bad boss in my opinion.

[Krissie_Wright]

Hi Mataribot!

I think we have all experienced the issues you are having with your prosiasis at one point or another during our time living with it. I know that I personally had a really hard time coping when I was in junior school, my life was a living hell from the age of 8 to 10.

I am quite lucky that my hubby is more than happy to listen to me rant about my skin (on the odd occassion that I do) but I understand how frustrating it must be when the one person you feel you can talk to is just as stressed as you are about the cost of treatment etc.

Have you looked into the possibility of a psoriasis support group in your area? I know whe have them all over the UK and info can generally be found from the dermatologist or rheumatologist. I think that being with people who are in the exact same place as you (emotionally and physically) may help you to deal with the burden and stress - after all the stress is not good for your skin!

Your boss is very lucky that I'm not his employee... I'd certainly give him a piece of my mind if he had made a comment like that to me...

There are other prescription anit-histamines that you can take for the itch, also have you tried a hydrocortisone cream or even calamine lotion (that you put on chicken pox), they are both great at soothing the burning itch.

Hope that you find the support you need.

Krissie

[mataribot]

Hi Mataribot!

I think we have all experienced the issues you are having with your prosiasis at one point or another during our time living with it. I know that I personally had a really hard time coping when I was in junior school, my life was a living hell from the age of 8 to 10.

I am quite lucky that my hubby is more than happy to listen to me rant about my skin (on the odd occassion that I do) but I understand how frustrating it must be when the one person you feel you can talk to is just as stressed as you are about the cost of treatment etc.

Have you looked into the possibility of a psoriasis support group in your area? I know whe have them all over the UK and info can generally be found from the dermatologist or rheumatologist. I think that being with people who are in the exact same place as you (emotionally and physically) may help you to deal with the burden and stress - after all the stress is not good for your skin!

Your boss is very lucky that I'm not his employee... I'd certainly give him a piece of my mind if he had made a comment like that to me...

There are other prescription anit-histamines that you can take for the itch, also have you tried a hydrocortisone cream or even calamine lotion (that you put on chicken pox), they are both great at soothing the burning itch.

Hope that you find the support you need.

Krissie

Thanks for the reply! For the last three years I have been the anti social (real life) and have no friends left. I can check my dermatologist next time to see if there are any support groups. I think im going to fire my GP and my Rhumey for someone who doesn't care about the cost of medication. As long as I can afford my co pay, then cost is my insurance companie's problem.

I have hydrocortisone cream for my eye lids. Works ok for them, but absolutely burns when put on any of my skin that is flared up.

Anyways I do have a question, that maybe someone could help me with. This issue occured for the first time, back when I am on Humira. I get these small bumps underneath my arms and continues down my lats. They eventually scale (hurt when itched) and disappear. My derm said not to worry about it, but they came back after the last shot of stelara. It didn't last as long as the first time, but I am somewhat scared that it might be related to the drug.

[Fred]

Anyways I do have a question, that maybe someone could help me with. This issue occured for the first time, back when I am on Humira. I get these small bumps underneath my arms and continues down my lats. They eventually scale (hurt when itched) and disappear. My derm said not to worry about it, but they came back after the last shot of stelara. It didn't last as long as the first time, but I am somewhat scared that it might be related to the drug.

When you say bumps, how big and do they have any substance like puss come out of them ? If so it could possibly be Pustular.

[mataribot]

They are typically small, but every once in awhile they are bigger. They don't rupture unless I scratch them when the scale is present. It basically looks like a pimple the scales over with my P. The whole process doesn't last very long. Again, im told not to worry about unless it happens again (it did). I don't know if I should tell my derm or not.

[Fred]

They are typically small, but every once in awhile they are bigger. They don't rupture unless I scratch them when the scale is present. It basically looks like a pimple the scales over with my P. The whole process doesn't last very long. Again, im told not to worry about unless it happens again (it did). I don't know if I should tell my derm or not.

Sorry but I'm not sure, have a look at this thread as it has the different types of psoriasis and links to images: https://psoriasisclub.org/showthread.php?tid=56

But yes if your dermatologist said to contact them if it happened again and it has, then you should definitely contact them. It may be something and nothing but best to get professional advice I think.