Dex... it's worth it if it works right?

Hello all.
I am on day 2 withdrawal of Dex. Only 20mg so guessing my reactions could be much worse.
The good news is it worked. My levels are up to 160. I have PLENTY of wiggle room for them to fall without much concern.
Trying to tell myself that the week I just went though will be worth it. And it will IF the results stay for a while. What have your experiences been with it? Does it last long enough to be worth it?
I have felt anxious, stomach pain, achy, lethargic, emotional, and this is the fun one... my vision changed. I used to see long distance fine and needed glasses for the computer and now I don't need glasses for the computer but I can't see distance. SO WEIRD! Assuming it will go back to normal?

Please tell me I am not crazy and this is a thing. haha.

Kathy

Oh My are Dex blasts and withdrawals fun? Everything can and does change. I had a cardiac episode 3 weeks into my DEX therapy, could not shut my mouth, and peed every 20 minutes. My vision also changed, I could not look left or right and had little focus looking straight ahead. It worked for me also and my counts peeked at 217 and slowly dropped over 6-7 weeks. I am now on weekly Nplate. My Hemo did not prescribe a taper just 40mg/day 4days, 4 times. It took a month to quit starring at the walls afraid to move. 3 months later and my wife will testify my personality changed (not for the better). But "is it worth it"? You must find something that works for you to keep above the minimum platelet level or risk spontaneous internal bleeds and tragic outcomes from an accident. There are many therapies and it is a matter of you finding yours. There is a ton of good reading on here from Acute and Chronic ITP victims. I am trying high dose probiotics this month. Many of us try self therapy with all manner of adding and subtracting from our diets, supplements, routines, and environment. Check out member Hal's ITP types and treatments, a very good read! bottools.com/Hal/ItpTypes.html Good luck.

Kathy:
Only you can decide if it's worth it or not. Wait a week or so to see how your counts do before making that decision. Will it be worth it to you if counts last a week, four weeks, three months? Time will tell. Your vision should go back to normal. When I was on Prednisone, I had blurry vision for weeks and also had a large, black spot in the corner of my vision that also lasted for weeks. It went away eventually.

Thomas:
There usually are no taper with Dex pulses. On and off.

That's my plan. I can't do this monthly, but maybe I can handle it a few times a year. Time will tell.

I don't think there is a doctor on earth who would let you do this monthly indefinitely. Usually six months straight is it.

Hi Kae~ I also did 20mg 4days. Can't imagine how bad it would be to double that dose. I so wired, hearing voices and not sleeping at all. At night I'd just lie awake hearing so much noise in my head like 100 people talking at once. I always knew it was the drug so I wasn't truly psychotic but it would be defined as steroid psychosis. I don't recall any visual disturbances. I didn't go to work, probably shouldn't have been driving. On day 5, first day off dexy, I was depressed, everything looked very dark and hopeless- again I knew it was the drug but still a bad day. Day 6 I felt better.

In my case I had 5 days of misery for about 9+ days of higher counts. I found it to be a very harsh drug, so for me it was definitely NOT worth it. I don't like drugs that shoot counts sky-high and then crash- it just seems so unhealthy. I decided after dexy that I wasn't going to do that kind of treatment again. I much prefer Nplate, a drug that was designed for ITP. I feel good on it with little to no side effects and it keeps my counts safe and steady.

Remember there are other choices for treatment and its your decision. We all have to kind of find our own way with ITP. There isn't one thing thats right for everyone. But just my opinion- I would never take a drug again that caused me to have vision changes. Joint pain, nervousness, muscle aches- I can handle that but eyesight is way too precious. good luck! we are here for you!