Hi everyone, this is my first posting here. I just want to share my story. I was diagnosed with Plaque Psoriasis just after highschool (thank God after highscool) and then came the PsA 5 years later. It all started with psoriatic nails, them came the skin plaqes on knee, elbow, scalp, private area, and hands. I didn’t know much about psoriasis or that it was more then just a skin disease. I educated myself and tried to educate my family to no avail. I had a step father who undermined the severity of my disease with my Mom and family saying that it was a pimple disease and that his doctor brother said it was nothing. My Mom has a little patch of psoriasis on her back which is dormant, so she has know idea, and I pray it stays dormant. This site has helped me have a knew perception of myself, the disease, and the world around me. It is still a up hill battle tring to explain every time I see my family what Psoriais and Poriatic Arthritis is. My wife is my is my best advocate and the only person to actully try to learn about P and PsA. I have PsA in my spine, hands, and then my knees. The joint pain got so bad that I made the decsission to get on Humira. After just 1 month on Humira my Psoriais cleared up 100% and I was starting to forget to take my pain killers. I was amazed with the results so quick and then all of a sudden I developed abdominal pain that put me in the hospital. They tested my gall bladder, colon (early colonoskopy), and small intestines. My doc took me off of the Humira and told me it was the side effect from Humira. Now I’m off the Humira and worse then I have ever been. I have joint pain in just about all my joints now, fibro on back muscles, and inflamation of the eyes. I work in real estate and don’t know if I will be able to return. I’m back on predisone and hoping to get releif or fat (lol). I don’t know if I want to go through this again with another Biologic drug. I’m debating (scared)weather or not to try another biologic drug. I just want to say that I felt all alone with my Psoriasis and PsA until I found this support group. I may not say anything but the postings here have changed my life for the better. I now realize that I’m not the only one suffering from Psoriasis and PsA. Thank you to everyone for your input on Psoriais and PsA. I’m doing the Walk to Cure Psoriasis and PsA in dallas Nov. 3.
Welcome, Brandon! What a journey you've been on! I hope you find something that works for you soon. It's difficult when your family dismisses your medical issues and doesn't even try to understand.
Hi nym, thanks for the welcome! It is very difficult but with time and even the humira commercials on TV has helped my family to gradually open their eyes. My mom also donated to the Walk to Cure Psoriasis and Psoriatic Arthritis which shocked me. This site has helped me so much! Thank You!!!
You’ve really had a rough ride, so glad that you have a supportive wife and your family are finally taking your PsA seriously…sometimes I think its hard for parents to accept their children are ill, especially if they don’t look sick!
This site helps us so much to stay strong and support when we need it…its so good not to be alone
Amen! Thanks so much Louise!
Louise Hoy said:
You've really had a rough ride, so glad that you have a supportive wife and your family are finally taking your PsA seriously.........sometimes I think its hard for parents to accept their children are ill, especially if they don't look sick!
This site helps us so much to stay strong and support when we need it........its so good not to be alone :)
Welcome and I love this site. You can see I am here all the time.
I was officially dx over the summer of 2012. Mine came on very suddenly..well I went from being a crying baby to a somewhat more workable mom. I have to remind my children and husband that I have a new normal and you will have to get use to it. They have , I think. The one person in my family who is having a hard time with this is my mom. She is in denial and I had to tell her to stop living in a fairy land and become a realist like me. I am never going to get better. I am going to have my good days and bad and hopefully more good.
I am currently on Enbrel, six weeks, and it seems to be doing its job. I still have pains and stiffness. I take predisone, 5 mg. daily, folic acid, methodextrate and Enbrel. I have currently lost 57 lbs with the no sugar no flour diet but now I only eat fruits, vegetables, and grain fed chicken or beef. No milk, sugar, wheat, preservatives nothing but they real thing. I have been told, before this lovely diagnosed that I would be diabetic if I did not loose the weight. Now I am loosing and was excited that I am going to have a new me..and boy did I get a new me!!
Yes, we have to educate others. But surround your self with positive people there is enough negativity in the world. I also belong to a sight for the chronically ill. It helps me deal with this illness but also it gives me lovely tips on how to live!
I also had a bad reaction to Humira, 2 days after the first injection I was in massive pain, it seemed to be in my abdomen and large muscles I was in the hospital for 3 days as they tried to figure out what was wrong.
I was also on enbrel for 2 ½ years and it help with my plaque psoriasis (which cleared right up) and did wonders for my PsA.
If you have the option to try the enbrel give it a try.
I’m currently on Actemra 800mg every 4 weeks and its working well for my PsA but my plaque psoriasis is SLOWLY coming back and is being treated topically with success.
how about you write a letter to them, and explain in detail, how difficult it is to do some things that most people take for granted.. I find that writing opens up both the person doing the writing, as well as the folks reading it.. if your not much of a writer (though you seem to communicate well online), or in addition to the letter/email, maybe take a video of your self doing something that is a struggle for you.. I have done this a couple of times just to document things.. like last week I was having a heck of a time opening up a bandaid wrapper.. so I set up the camera and filmed myself doing it.. not sure why really, but thought it might be good to have in case I ever needed to justify to my insurance or something..
good luck amigo