Been awhile

HI everyone, it's been a while for me. I guess I've just been busy with summer activities and working on the walk a thon here in Wisconsin. We're pretty excited and organized a great event. It's the 25th, so we're down to the wire now. All we need is a nice fall day in Wisconsin and it will be perfect. Hope everyones summer went well and now welcoming autumn, which for me is my favorite time of year. Leaves already falling here in Wisconsin and days have turned cooler, with night time sleeping weather wonderful. Door open and no A/C running, that's how I love it.

My counts are still good, :laugh: last count a couple of months ago was 200. I don't go again until mid Oct, just before I have cataract surgery. :side: Too many steroids and early cataracts, so my vision has been terrible the last year and the last 6 months have limited many of my activities, especially driving at night.

I'm still struggling with hives and itching, with some days making me totally nuts. It seems to chill a bit, but then roars back. Right now I'm in the roaring back phase and have scratched myself raw in some places. So, I upped the prednisone again and hopefully that will chill it down again. I see the immunologist/allergist later this month, but I don't think he'll have any answers :silly: and I'm not sure I want more drugs to manage it. I'm already on 3 anti-histamine and one of them I avoid, because it totally whacks me out.

I did start Cymbalta for the fibro pain and it's helped a bit, but not much. I could up the dose, but I really don't want to, because when I started Cymbalta, it took me a month to get used to it. I had absolutely no ambition to do squat and basically just sat around staring at the walls. What a waste and it didn't give me that much relief, so I don't know. For now I'll just live with it and decide later.

Love the smilies :kiss:

Hey Kim, great to see you! I've been wondering how you're doing. Thanks for the up date.

Hi Kim, there you are! Are you doing the walk too aswell as organising it?
Good luck with the itching!
Julia

Sorry to hear you are still itching. I haven't talked to you for so long! We need catch up e-mails.

My husband recently started with that problem. He broke out in hives and blisters all over his body. He saw the dermatologist and they did a biopsy, the results come in Thursday. Anyway they think he has Bullous Pemphigoid or Erythema Multiforme. I think he has Dermatitis Herpitiformis. He is on Prednisone, had a shot of Dex, and they are testing his G6DP for Dapsone tolerance. He has an anti-itch med called Hydroxyz - he claims it's fantastic.

Sandi, are you taking bets? I've never heard of any of those things. Which is the worst? Erica

Edited: OMG that sounds wrong - that's not what I meant! I mean, joking around, are you taking bets, and then, seriously, are these serious conditions? Which of them would be more or less serious or easier to treat? I didn't mean I wanted to bet on the worst one - I'm sorry! Erica :S

Erica - it's okay. I got what you meant. Sure, I'll take bets. They are all about equal as far as drug treatments. Erythema Multiforme has the best shot at being less chronic. Dermatitis Herpitiformis most likely involves Celiacs, so on top of Dapsone there would be a serious diet change (probably for the good). That's the one I'm betting on.

Julia,
I'm walking and organizing the walk -- it's been fun, but a lot to do. We're shooting for 200 participants. We have a professional photographer, so you'll see pictures in one of the newsletters, I'm sure. Too bad Sandi couldn't come and take pictures, but she hates to fly and it's a pretty long drive to Oconomowoc, WI, from PA.

Sandi,
It's Thursday, any results yet? I was tested for all those too, but nothing came up, although there are white blood cells and weird cells in the tissues, which generally are not found there, they are non-diagnostic, so it's idiopathic... hate that word!

I had Hydroxyz, but man it made me like a zombi. I think it's used to treat depression, but they found that it helps with itching. I had to have a pretty high dose to help with the itching, but it made me like a zombi and I hated it. I do OK most of the time with the combination of antihistomines I take, along with the cymbalta, which acutually seems to help the itch and some of the fibro pain. It took me 2 months to get past the way it made me feel, but finally I seemed to have adjusted to it. I've actually been thinking I might try to up it a bit, but I'm kind of afraid to. Danny might like the Hydroxyz because it helps keep his moods stable too.

Kim

Ha - so funny you mentioned that! I was surprised by how calm he's been lately, even with the Prednisone. He's usually high strung so I thought that with the steroids and the worry he'd be a basket case. He's been calmer than ever. Must be the Hydroxyz, although he only takes it at night. He needs to keep getting that stuff!

Well, biopsy revealed that he has none of those. He was tested for Celiac's too - nothing. He does have lymphocytes, histiocytes, neutrophils and eosonophils. Conclusion - severe allergic reaction to bug bites or one of his medications. Our dogs had fleas a few weeks ago. Doctor said get off of Prednisone and good-bye.

SO he comes home and shows me two new huge hives on his neck, and a new one about 8 inches around on his arm. At least he stopped getting the blisters, but the hives keep coming even with the meds. He's still covered in scabs and hives in various healing modes. I was sitting here thinking about it and got struck by a lightning bolt. He's been eating peanuts and sunflower seeds lately...about five weeks now. This started about 4 weeks ago. He's eating them every day and had some this morning. I had my back to him and spun around and said "I think I have it!" Honestly, I think that has to be it! He's going to eliminate that and if that doesn't work, we start on his meds. One at a time - Kim, you know that drill. I can't believe the doctor didn't even do any common allergy testing...nope - didn't bother. It's up to us or get a second opinion.

I'm glad you adjusted to Cymbalta. I only took one pill and was done with it. There was no way I could function at work - I couldn't even get off the couch the day after I took it one night.

I wish I could come and take pictures! I'm so into the SmugMug challenges these days, and I've won a few. I have a Mega Challenge due this weekend, so I've been busy with that.

Hey Kim,
Your back! Glad to see youve been keeping busy.