My 13 year old daughter Shelby was diagnosed with psoriasis when she was about 8 years old. Her family doctor kept her in topical creams until it became unmanageable. After seeing a dermatologist for a couple of years her symptoms just kept getting worse. Due to her age, and the effects of medications, he would not prescribe anything more than foams and creams… By this point her finger and toe nails were starting to fall off, joints were so swollen, you could no longer see her knuckles. I have never heard of psoriatic arthritis and had no clue what was going on with her. We had to wait months before getting into the children’s hospital in Columbus to see a rheumatologist. (Because she is young, we have to travel 2hours for someone to see her). After some X-rays the doctor discovered that the joints in a couple of her toes and fingers had already been damaged. She immediately started her on a high dose if methotrexate and Enbrel followed within a month. She was doing a little better than my insurance decided they would not pay for Enbrel until she went off of it for at least a month to prove that it was medically necessary . After a year and a half her symptoms started to flare up and the Enbrel seemed to no longer be working. Shelby recently started taking Humeria and although she is showing signs of improvement, she is now getting depressed. I have called her doctor and we are just waiting to see if things get better but I’m so worried… And thats what brings me here… Any advice?
Dear Shelby's Mom,
Hi! How are you? I, too, have just joined this group and am looking for answers but I've had PsA long enough to know somethings that might help you. I'm sure others will have valuable input. First off... insurance. If your insurance won't cover a medication get the name of the company that makes the drug and get in touch w/ them directly. I couldn't get coverage for humera and was paying 1,500 for 2 pens. I told my doctor I couldn't do it any more and she put me in touch w/ Abbot, the manufacturer of Humera. They were wonderful. They have a program where they supplied it to me at no charge for well over a year. Now our insurance does cover it so thank the Lord for that.
Secondly - methotrexate. I was supposed to take 6 pills one day a week. I tried it and had horrible side effects, so I took 4 pills over 2 days. It didn't have the effect that it was supposed to have, and by itself the Humera stopped working. My doctor suggested that I get a shot of methotrexate in lieu of the pills. That way it goes directly into the bloodstream bypassing the digestive tract. I had my first shot last night and...no side effects. For some reason, taking it in "shot" form really scared me and I was very upset about it, but I think I had just built it up in my head. Anyway, if side effects are the reason your daughter can't take it, you might want to try what I did. The shot was a piece of cake compared to the GI problems I had w/ the pills
Lastly, depression. I just blogged this last night. I am a very upbeat, positive person, but I have most definitely been suffering from depression. I was attributing it to my job and the stress that goes w/ it, but I think a great deal of it is just dealing with the pain of PsA every day. I don't know if that's what Shelby is going through, but I also can't imagine how hard it must be for a girl her age to have to cope with this. My 26 year old daughter was just diagnosed w/ RA. This disease stinks, doesn't it? and age doesn't seem to matter.
I hope that you get the answers you need here and I hope that maybe something I've experienced will help in some way as well. Best of luck to you and Shelby. I think that finding this blog has already helped me. The people who responded to my comments were so nice and so very encouraging and I need that right now. Tell Shelby she is not alone and I really believe that talking to others who share PsA is the best way to get answers and to empower us when we are feeling helpless.
Hugs and blessings to you and your daughter,
Nancy
I was only speaking to a young man on the weekend who had Psoriasis as a child and almost all over his body.
He said he had UV (Ultra Violet) treatment and it worked for him. Hope this bit of info help. The PSA is very different matter and I am sure this sight will help, but we all have to rely on hoping to get the best treatment that works for each of us.
Depression needs to be treated by the experts. I use to work in this field before retiring. The best combination is your doctor and a counsellor/therapist. Teenagers are coping with enough with all the hormonal changes going on and the swings from being a child one moment and also wanting more freedom that parents know is sensible.. There are some key things you can do. Get your daughter to write a list of at least twenty things that she enjoys doing. Nothing that involves spending or excess. Do at least three a day and make sure one is a physical activity. If you have to start small and take baby steps do that and gradually increase the Physical activities. Physical activities get the endorphins working these are what makes us feel good. Maybe she can write a journal about how she feels, she does not have to show this to anyone. This is to help get the thoughts out of her head and stop them going around and around. It is also very important to make sure your daughter is getting enough proper nutrition and plenty of sleep, but don't allow her to hide away by sleeping during the day.
Positive affirmations. e.g I will cope I will be able to....... I am worthwhile, My skin and my disease do not define me.............. etc. etc. Get her to pick three good affirmations. It is a bit like telling yourself enough times and then you can believe it. Choose a sticker, a favourite item, maybe fairies or dolphins, something she likes. and put them all over the place on draws and mirrors and cupboards and get your daughter to say an affirmation to herself and do this every time she sees the sticker. If she is in a private place encourage her to say these aloud.
I do hope I have helped you in some small way. A big hug to you mum
Thank you so much Bella and Nancy for your words of encouragement and suggestions. Shelby has some amazing friends that know about her condition so we have been surrounding her with them, it has helped a little. I have been contemplating a therapist for a while now and will definitely get her to one as soon as possible. She has done so well up to this point with this disease. When she started Humira, the nurse gave me a co-pay card (that’s not income based) that pays for her methotrexate and Humira for $5. It’s been such a blessing. Fortunately, Shelby has not had any issues with the methotrexate, she has been taking 10 pills once a week since august 2011. I also worry about the internal damage that may occur later in life - she gets blood work every month and so far everything is ok. Early on, Shelby tried uv treatments, it helped a little but since most of her outbreaks are in her head and the light wasn’t able to do anything for that area. Thank you again for your comments. It really puts my mind at ease knowing she is not alone in this battle. I hope both of you are doing ok and my prayers are with you.
Hi, again! I just read Bella's comment about the positive affirmation. We have two daughters who were both very heavy growing up. My husband and I felt that rather than constantly being "on them" about their weight, we would be on them about how fantastic they were - positive affirmation. They were both incredible. well adjusted, funny, smart, beautiful girls who didn't let their weight get in the way of anything. They both played on their HS tennis team and both had lots of friends. Since then, on their own, they have both lost 100 lbs and their outsides are as beautiful as their insides. All this to say, you seem like an incredible Mom who is doing everything possible to make her daughter's life as wonderful as you can. I'm also confident that you're the type who is constantly encouraging her, Though it may seem like you can't do enough, I'm sure that Shelby's knowing how much you love her and how much you want for her is the best medicine she can get. Hang in there.... better days are coming!
Dear Jane, my heart goes out to you. Seeing your daughter go through this must tear you up. I know she is in great discomfort but I know as a mother your pain surpasses hers. I am still looking for answers for this stuff but if I find anything new I will let you know. Last night I watched a documentary. It was about this guy who had an autoimmune disorder called urticaria or better known as hives. He went on a juicing diet that was suppose to “reboot” his system. He was just going to try it for 10 days but he stared feeling so much better that he decided to go on for 60 days. He had been on steroids for years, was way fat, had high cholesterol an triglicerides and more. After the 2 months he was off all meds., had no more flare ups with the urticaria and was in beautiful physical condition. I know for a child or for anyone this is a difficult route to take but if it could help her feel like herself again wouldn’t that be a wonderful thing? There were other stories where people went on this plan for less time and got just great results. My husband and I are going to give it a try. I’m 60 and my husband is 62 and we both love to eat. We aren’t over weight so we’re just gonna try for 10 days. Let me know what you think about this. …I just dug the name of the documentary, “Fat,Sick and Nearly Dead” that sounds horrible but there is a lot of humor in the show. It was very eye opening. Good luck.