Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I think I know what my son has. Opinions??

I suggest two things:

1. photograph his psoriasis.

2. get him to a good dermatologist.

My dermatologist is great. Based on the photos I showed him, he was like "yeh, you have psoriasis, but we have to biopsy it next time you have it, so we can document it". Told him about the arthritic issues and he was like "yeh, you have psoriatic arthritis". I told him I'd been dx'ed with undiff spondy.

He wanted to know why I wasn't on humira. Told me he'd put me on it if the rheumy wouldn't.

All those years of fighting with rheumies and if I had known my "very dry skin" was psoriasis, I could have bypassed all that nonsense by going to the dermatologist.

The advantage of psoriasis over joint inflammation, psoriasis can be seen, and biopsied and documented with photos. Lots of good evidence.

And as others have said, psoriatic arthritis, AS, undiff spondy, all treated similarly.

My dermatologist says his patients on Humira do very well.

My aunt was finally dx'ed with psoriatic arthritis in her 60s, after a lifetime of suffering. She was immediately put on remicade.

Thanks for the info everyone. I have got an app for him with the GP on Friday. Will get the GP to look at his scalp, and get him to look over the notes in his file from when he had the scaly sores on his chest and back. My boy seems to be flaring ATM so that is a good thing I guess so the doctor gets to see everything.

On a side note I am wondering if it is just the weather getting colder or what but all 3 of us, my daughter included, all seem to flare at the same time. Nothing has really changed, diet/lifestyle/house etc except for the weather. Might pay to keep an eye on those types of things I think just to rule out diet etc.

Yep Psoriatic arthritis. But I wouldn't be surprised if as a child he was given a more general Juvenile arthritis diagnosis of some sort - unless he has a classic "adult" presentation. I think paed rheumies seem aware that presentations can change as they get older and the key thing is to give a diagnosis that allows appropriate treatment, without narrowing it down too much.

No need to be castigating yourself for missing this possible link.....you are His Mum...

I, on the other hand have had 30 years professional training and experience in musculoskeletal disorders - and a somewhat *personal interest* in the spondyloarthropathies.

Aussiegirl, nooooo, no more problems for the best surfer mom on the planet. Boooo. It does sound like a strong, strong possibility. At least there are treatments. I believe a lot of us flare with weather changes, especially cold weather. It has to do with the change in the barometric pressure and how it affects our blood. That is why I have been trying to sell this house for 5 years and move. Hang in there you.

Don't get down on yourself now. You have these pertinent points to give to doc, so your son can get the help he needs. (You had me at 'rash'...was thinking PsA immediately) Good luck. Give the doc the list you made here. Should at least get referral to rheumy and/or derm. Then treatment will be the next step. Good luck--you are a wonderful mom.

I'm going with Psoriatic Arthritis as well, Trish....I'm so sorry yall are going through this and I so pray that it's not a juevenile form...I know this must weigh on your heart so much but hang in there... big hugs & much love, my friend....

Michelle

Pea: Thanks. I hope you can sell your house. Where are you looking to move to if you do. (If you don't mind me asking)

Rumble: I guess it has been a similar learning curve to that of my AS. In that I am finally connecting the dots and it suddenly all makes sense now. Because the first rash was so odd but cleared up relatively quickly I never gave it a second thought until I discovered that his dandruff was in fact scaly red and inflamed sores that are all over his scalp and suddenly the light bulb moment.

Michelle: So nice to see you girl. How are you doing now? Have thought about you often.
So far my boy had been given a general diagnosis of Juvenile arthritis which as you know is a very huge umbrella but still limits what treatment he has been able to access. Basically it has just been Ibuprofen. There is not a day goes by that he does have at least one. Even with all the precautions like eating before and taking it with milk, I can only imagine what it is doing to his stomach. He just turned 14 on the 19th April.


I am now tossing up how I should approach his Doctors app today. Do I tell the doctor up front that I am concerned it could be psoriatic arthritis or wait for him to look at all of the symptoms and give his opinion first.
Should I ask for more bloods to be done? Last bloods were as stated in my OP. ANA positive, RA factor was at the highest end of normal and HLA-B27 was negative but I have since been reading that you can get false negatives with HLA-B27. I have also read that HLA-B8 can be associated with Psoriatic arthritis so should I ask for that.
I guess I feel there is a fine line between pushing for answers and telling the doctor how to do his job. A line I don't want to cross, the last thing I want to do is come across as the later.

Oh Trish....I'm so sorry, I know this is difficult... Both of my girls started presenting symptoms during the same year, at the time they were 14 and 16...well they too got a similar DX, so I took them to Tulane and had an individual DNA strand test done...it took about 6 weeks for the results to come back and when they did, they were diagnosed immediately, Erica was DXed with RA and the test showed she had the genes for Lupus and Kristen was Dxed with RA as well and both also have fibro...so Kristen is 24 now and she has only experienced very mild symptoms that do not interfere with her life(TG) and Erica went through a year of utter hell, that whole year....I was REALLY concerned, it was round clock pain (my poor baby)... but when she turned 17, it abruptly went into remission (and the doctor's predicted she would be in a wheelchair by age 21 )...she is 27 and she runs marathons and does strongman type races (over obstacles and the such... ) and she has not had one significant problem in the last 10 years, I've been noticing signs of disease activity in her for most of the last two years but it's manageable for her and she's been controlling it through diet pretty well the last few months....I know it's scary but hang in there....it could change in a second (for the rest of us too...both of my sisters have been in remission for over 20 years... ) ....big hugs Trish ...your in my prayers, my friend!!! Michelle

P.S. I too have heard that HLA-B8 could be involved in and I just read about IL-2 being involved as well...

I had a rash on my elbows for 7 yrs before I had a light-bulb moment...2 yrs after beginning treatment for 'inflammatory arthritis', first dx from rheumy. Even after reading stuff about PsA here on KA. Duh. Then asked PCP. Then asked rheumy if that gave me a PsA dx. Yes. We all have 'duh' moments. Keep on the path, mom. Kids are going to be good with it. Yea for you!!!