May-June '04 | briefing | mail | don't say this | flakers' jargon | flaker creativity | articles | other places | archives | send mail | ed dewke | legal stuff | order | search | PsorChat | PsorChat Review | 2004 Ed Dewke

A Predictable Litany of Symptoms Presage her PA Flares
from Claire S.

Hi Ed.  I came across the correspondence at FlakeHQ titled, Lonely and Flaking in the UK.  This may or not be related to something Annie said about the sore throat, but each time I have a bad flare-up of joint pain I also get sore throats. 

I'm "onto" it now but about a day before I am to experience the really bad joint pain I start to feel sick.  The first couple times I thought I was getting the flu.  My throat would become very sore and this past time I had a node under my ear swell into a big hard lump.  My throat, fortunately, will feel better after a few days and the node will go down, but then I'm left with unbearable joint pain.  I figured in my case it's my hyper immune system.  You know, it needs to start kicking out those T cells to wreck havoc on my poor innocent joints!

By the way, I really loved your briefing.  I'm sorry you are having such a hard time but you write with such passion that I'm nodding my head to everything you say.  Very few people who do not have the disease (P or PA) can fully understand the emotional rollercoaster one goes through.  My boyfriend tries, as best he can. Co-workers are a different story.  Even though I work in a nursing home, with nurses, nurses aids etc, their empathy dried up a long time ago for anyone in pain.  They're barely sympathetic for the 85 year-old with osteoarthritis, let alone the 26 year-old with some arthritis they've never heard of.  It's even worse because I don't look like there's anything wrong with me.  I regret now taking for granted all those years that I jumped out of bed with a "spring" to my step.  Now I literally roll out of bed so I don't have to use my shoulders or hands to push myself up. 

So I really wish you the best of luck with your psoriasis.  You know some days it feels like it's only luck that will help because it's so volatile and unpredictable.  I'm not going to tell you to keep your chin up because I know you will.  -Claire S.

*****

Ed’s Response:  Your list of successive symptoms at onset is strange to my ears, Claire.  First sore throat, then flu-like symptoms, then (maybe) node swelling and, finally sore joints.  Perhaps you’re right and it is a hyper immune system over-reacting to the P or PA.

I have noticed somewhat similar symptoms in my case, but usually in reverse order:  first comes the bad joint pain, then the flu-like symptoms including fever, lethargy, loss of appetite. 

When you wrote at the first of the year (Claire’s Story: Not New But Well Told) you said you were scheduled to see a rheumatologist.  What did you discover at that visit?  A rheumy might also be able to shed some light on your repetitive litany of symptoms. 

Thanks for your kind words about last month’s Briefing.  Now that the rebound has crested, lesion growth has stopped, and the Soriatane is doing things to the lesions (but not clearing them), I look back on those first few despairing weeks and, like many flakers, I’m sure, feel a little sheepish about my woe-is-me state of mind.  It seems I’ve once again survived it.  And, true to form, if I obtain clearance again and it lasts for some length of time, when it finally acquiesces to my body’s incorrigible need to flake and I rebound again, I will have forgotten, again, and it will be woe-is-me — again. 

To give myself a little excuse, I had the double whammy of the rebound AND the news about my T-cell problem, which prevented me from trying Amevive. 

By the time you read this, Claire, you should have reached — or be near — the end of your Sophomore year at college.  I hope you are looking forward to some fun this summer.  -Ed

This Month's Mail | Archives

www.flakehq.com