Diagnosed in February, finding my way

Dex can bring it up that much? I am on my first round of it. I am on day 2 and go back tomorrow for a recount. Curious to see if I respond like that! This morning I felt AMAZING! Work crazy early, (3:40) but was bouncing though work until about an hour ago. The crash is EPIC. haha. exhausted and my knees and ankles suddenly ache. Who know if it's the medicine or just me. haha.
Kathy

Hey Kathy!

Dex tends to bring my counts up really high, and then they fall down to safe but lower levels--until they don't that is. :blush: As I was continued with the monthly pulses, my counts got progressively higher and stayed up longer. Now my doctor doesn't have me on monthly pulses and we're just treating the levels as they drop. I'm not quite sure what to think of it all, but I'm just taking the ride and hoping for the best I guess.

I hear you about the EPIC crash. Day two I always wake up super early as well and feel pretty good until the afternoon, which is when I start to fall apart. Days 3-6 are the absolute worst of the cycle for me, with day 6 (2nd day off meds) being the worst. I clear my schedule if at all possible on those days and spend as much time on the couch, watching tv and resting, as my responsibilities allow. Generally by day 7 I can feel that I'm marginally better than the day before, and that gives me hope to go on, which I really need, because by the time I get to day 7 I'm struggling with depression and discouragement. Then by day 10 (which happens to be today, in my case), I'm back to my old self, physically and mentally.

It's not my favorite road, but it keeps me alive, right?

this is all so new to me that any advice of what may come my way is helpful. My levels aren't scary low. 28 (from 37 last week) but my last count was 186 so the drop was substantial. This is my first round of anything. I am still wrapping my head around it all.

I remember being where you are. It was terribly disorienting, dealing with a disease I'd never even heard of and having to manage all while being on steroids with all the side effects (especially the brain fog) that came along with that. People here on the forums were so helpful for me. They told me that it would get better, that everyone that gets diagnosed goes through it, but that eventually you get a handle on it and you're able to deal. They were right about that.

They did say (and now I say to you) that as much as you can arm yourself with information, the better you will be able to advocate for yourself and have a real say in your treatment rather than just going along with what your hemo says and hoping for the best.

For me, the best time to research ITP treatments and methods was AFTER I had completed a steroid cycle (meaning after I'd taken the meds AND after I was through the withdrawal difficulties), because my head was more clear then and I could better process what I was learning. When I tried to research while on steroids I would get confused, frustrated, discouraged and afraid and naturally that made everything worse. So, listen to your body and trust your instincts. Every body reacts differently, and what works for one person won't work for another. Eventually though, you'll get to a point where you can deal, and then you can get back to living the life you want to live AND you have the added appreciation of knowing how lucky you are to be able to live it, having been on the other side of the coin.

That's been my experience anyway.

Good luck to you!

Just for the record, Dex is a rough treatment for most people. The side effects can be extreme and tend to get worse with each round of the drug. Some people find that they cannot tolerate it.

As for counts, you can experience the very high counts that sky rocket, but they generally do not stay there. Some people drop down slowly and some crash within days of stopping the drug. It's very rare for counts to stay up although that can happen with repeated rounds (sometimes six).

It's not used very often for those reasons. I wish you both the best of luck!

Dex is working. Up to 80. Go back monday and thursday to see if they hold or drop, thank god I have an understanding job! . Tomorrow is my last day on Dex. I am an emotional mess and starving and want to throw up at the exact same time. So much fun. I am what I believe that call a hot mess. haha

I know I got "good news" today but just want to cry. UGH!

Great news about the dex working!! I AM really sorry that you are having a rough time though. Like Sandi said, Dex is a rough treatment for most people. I have a neighbor who has ITP (what are the chances?) and he tried Dex and had a horrible horrible time (much worse and much longer than my own awful time), and swore he'd never do it again. He does Prednisone, I do Dex. Different bodies, different reactions.

If your body is like mine, today through Monday will be your worst days, and then starting Tuesday, you'll gradually start to feel a little better as time goes on. It's a hard road, and I often feel like the treatment is worse than the disease, but you WILL make it through, one way or another.

I practice quite a bit of self-care during days 3-6, hanging out in my sweats when I don't have to work, clearing my schedule so I can be at home, going to bed early (I take a unisom around 8, and that usually makes it so I can fall asleep around 10) reading easy mindless books (like young adult fiction, etc.) and watching mindless tv, anything to keep my mind off how crappy I feel and how I wish I didn't have this condition.

As much as I can, I try to remind myself that this won't be forever, and that I just have to wait it out, but that I can do it, that time will pass, and I will feel better eventually. If you have friends or family who want to help you, now isn't the time to be a hero. Now is the time to accept help if you can stand to do it. We have family members who have offered to bring us simple meals to eat during steroid weeks, because I am just simply not up to cooking, and getting take-out adds up really quick. I usually swallow my pride and accept their food. And then, when I feel better a week or two later, I am available for them in their time of need, and we all help each other, and we're all the better for it.

You hang in there. I'll be thinking of you and praying for you .

Thank you so much. Not to sound like a stereotypical woman/mom it isn't easy for me to admit I am not well and accept help. This really helps! If my levels don't tank it will be worth it. If they do, we go to plan B. Trying to stay positive, but hard when I just don't feel like myself.

Kae - you're only on 20 mg's, right? The usual dose is 40 mg's, so hopefully it won't be as hard on you. Good news on the counts!

i don't want to even THINK about 40mg. haha

I never did Dex, but came close. I decided I'd only do 20 if it ever came down to it. Some people actually hallucinate on 40 mg's. I never wanted to go there.

my points went up 60 in 3 days. So if it works, and they don't plummet next week totally worth it.

Good luck!