Need to Vent! And. That. Is. All!

Hi Natalie,

If I were you I would call the dr today and ask how to taper off safely but as soon as possible. I've never seen anyone be on dex for longer than a few days at a time. It sounds awful!

Natalie,

I agree with Dru. Last week, when I found out my 15 year remission was over, my doctor mentioned Dex as a possible treatment option. But after remembering how bad my side effects were on Prednisone, he told me I wasn't a good candidate for Dex because it is MUCH stronger than regular prednisone. He did say the course of treatment is much shorter, but was not worth it for me.

Like Dru said, I'd call your doctor and see how to taper off safely as soon as possible.

Hang in there!
~Lauren

Thanks so much guys for your feedback. I am hanging in there to say the least and I can't wait to discuss it with my doctor on Friday! First order of business besides getting my count is figuring out how to taper off of this mess! As always, thank you so much for your support. I don't know what I'd do without my ITP cronies!

Hi Natalie,
For comparison sake, use this handy-dandy converter: www.globalrph.com/steroid.cgi
4 mg dexamethasone equals 26.67 mg prednisone. Once you adjust for effective dose, one is not more "powerful" than the other.
Your dose equivalent to almost 4 times the cortisol (hydrocortisone) your body normally produces.
Yes, there is a dependency: that's why you taper.
First, your adrenals aren't producing normal levels of cortisol because they have been suppressed by the dex. (One of the ways to test for Cushing Disease is called a dexamethasone suppression test.)
Second, the glucocorticoid receptors have probably become desensitized by the high level of dex, and need time to recover normal function.
I don't know the right pace for tapering dex. I do know that you don't want to be taking more dex than you need for longer than you need it, as dex can take a serious toll (as can prednisone).

Dex isn't normally tapered at all. It's usually given 40 mg's for 4 days straight, then nothing. That's why I said I was surprised that your doctor was doing it this way. That is a loooong time to be on Dex, especially when you started with safe counts to begin with. I'll bet you feel a bit crazy! I would.

Sandi, I agree with you about the "normally" part. I think you are referring to the fact that dex is normally used as part of a high dose pulse - one to four days of relatively high dose dex, sometimes repeated a month apart multiple times. My understanding of the idea behind the pulse is to stay under the dex not long enough for your body to become dependent, and therefore not to need to taper.

As I understand it, Natalie, you have been taking dex too long now for tapering to be avoided. I am totally unfamiliar with your doctor's protocol, and if there is research to back it up. I am very curious to know more about this approach. Hang in there!

Yeah...it definitely doesn't fit any "protocol" I've seen, but it's been a good 5 years since I've been at this! UGH! I hate it and can't wait to discuss it with her on Friday. I am perfectly happy with being OFF OF IT and moving on with my life, even if that means my counts aren't totally normal! I don't care at this point. Thanks for your support, as always! I'll keep you posted! You guys always have such great insight and really put things in perspective for me. God forbid my count goes below 120....I would be perfectly happy getting a cbc every week and monitoring if it meant that I can get my brain back!

♪♫♫ If I only had a brain ♫♫♪ :whistle: :whistle: :whistle:

I could wile away the hours
conferrin' with the flowers
consultin' with the rain
and my head I'd be scratchin'
while my thoughts were busy hatchin'
If I only had a brain!


My favorite verse! of the whole song. Sorry to interupt but it's Sandi's fault did I tell you guys just went to see the Wizard of Oz live on stage!

Ahhh... kindred spirits! I sing that verse whenever I forget what it was I went upstairs for, which is often!

Try this:
Somewhere Over the Rainbow www.youtube.com/watch?v=AQVgA50wLXg&list=PLv69FN6gE8fvaZ031y7MxuVZnghqmKfv1

Ok...can I just tell you guys I NEEDED THESE COMMENTS TODAY? You made me laugh and gave me a "pick me up." You guys, I have to tell you, I am having a REALLY hard time on these steroids. I do believe they are driving me crazy. I am saying this in all seriousness. I sat through 8 hours of training today for my school district and came home and had a mental breakdown complete with crying, sobbing, and screaming. I am eating a pint of mint chocolate chip icecream right now through my tears. I am counting down the hours to talk to my doctor on Friday because I can NOT take these steroids any more. They are terrible. I have never, ever felt so horrible. My mood swings alone are enough to kill a small child. My husband has had the brunt of it and I am terrified of pissing someone off that I work with because, to be honest, I am caring less and less these days! When I was on prednisone I did not feel like this. I feel whacked out, crazy, depressed, anxious, and stressed beyond belief. I know alot of it has to do with returning to work, but I just can't ignore the way this drug has made me feel. I am on 4 mg of dex now but I don't care what anyone says. It is not like prednisone. It is much much much much much worse....as many of you have pointed out. Would you guys EVER hear me say something like, " I don't care if my counts are low." Well...now you've heard it. I would rather walk around with a bleeding nose and counts under 100 than have to endure this any longer. I am so afraid that this is the tip of the iceberg and that when I taper off completely A.) my counts will crash and B.) I will feel even worse. I am terrified right now. Please tell me that this will stop soon. I can't do it much longer. Don't mind me as I wipe my tears away and stuff my face with this gelato. It has been a terrible, horrible, no good, horrendous and did I mention shit-eating day. Love you guys.

Natalie, I'm sending you the BIGGEST CUDDLE in the world right now!!!
You CAN do this. You need to keep reminding yourself that you are a wonderful, caring amazing woman - it's the drugs that are doing this, not you.

:kiss:

Natalie

I believe you it is possible to crazy on pred. It is called prednisone induce psychosis when I came out of remission the doctor in emerg who wanted to put me on prednisone. I refused so he asked why?

I explained to him what happened to me when I was on prednisone. You see I have arachnophobia and in the past when seeing a spider I've been known to scream and run break out into hives even go into a full blown asthma attack. Well I was on 100mgs of prednisone and not sleeping and decided my only friend was this spider (think I named him george). When my boyfriend at the time wanted to kill the spider I freaked out on him saying he was my only friend.

Anyways the doctor in emergency says ahh yes prednisone induce psychosis that is a common side effect than proceeded to tell me how beneficial it would be if I took pred.

I was like WTF???

Natalie,

You just remember that it will pass! Your husband will cope, he knows what you are dealing with.
If you think you need to call your doctor. It's ok.

I wish I could take some of it for you! But maybe I can make you smile! How about I send Winnifred (Julia) some spiders?? Somehow that makes me smile.... A lot! It gives me a very pleasant mental visual!

I am going to my Oncologist tomorrow for a CBC to see if I can have my knee operated on. And, another thing to turn into a positive is the Ice Cream! Any reason is a good one for that!

Hang tough Natalie! You can do it! We all know what your dealing with. Get back on here and vent some more in required!

Jeffrey (does Wal Mart has spiders?)

Natalie:

I have heard people describe Dex for years, so I am very aware of how horrendous it can be. I can totally understand what you are feeling. I decided long ago that if I ever decided to do it, I'd take 20 mg's and not the full 40 mg's for four days. It sounded too horrible. Do you have to wait until Friday to talk to your doctor? Can you call tomorrow? Seems like unnecessary torture to me.

Most people feel absolutely terrible when stopping the drug, but that may be lessened for you since you are tapering. I don't know....you're the first person I've ever seen do this for more than 4 days. You are our new experiment...lucky you!

Most people also crash when they stop Dex, but again, that may not happen since you are tapering. I hope not - that's a lot to go through for nothing!

Hang in there, one way or another, it will be over soon.

Natalie I send you positive thoughts and can totally relate sadly! I am in prednisone but feeling the exact same way... I returned to work too (been working a bit lately but no one else was) but today first day all faculty back and man did i want to scream! I also worry about saying something I will regret like you or doing something I wish i hadn't! I also have a strong sense of paranoia that no one likes me or that they are all mad at me! And to top it off if I hear one more persons story about the amazing summer vacation they had I will scream and cry with jealousy as this lousy itp and prednisone has wrecked all of mine/ours! Especially when the stories of their great one inevitably turn into the question of "what did you do?" Grrrrrr- grumpy pants me!

But at least we know we aren't alone! And could be worse, befriending a spider sounds a lot more scary to me I can't blame.you for refusing the prednisone!!

I took dex for other purposes (cancer treatment with thyroid cancer) about 11 years ago and it is wicked! I was so crazy hyper on it... I remember it being bad but memory of specifics of how kind of fade, maybe like the way we forget the specifics of the pain of child birth! I did however use it with the long term use and taper like you are doing so hope it makes you feel better to know it is used that way outside its world a lot! Not nice though and hope you can taper quicker!

Hang in there!!! This too shall pass...

I can relate.
I've taken a whole lot of Dex over the past decade. I have a standing order for it as a rescue drug.
I have always found that the 2 days after a Dex pulse were far worse than the 2 or 4 days of the pulse itself. I call those 'Jell-O Days'. Loads of fun! But then, I've never heard of tapering off of Dex either. So perhaps that is different.
And yes, your count will probably tank after you stop. Mine drops to my normal untreated sub-4k within a few days.

Have you had any hallucinations yet? Those are...well...fun? As long as you remember it is just the drug, some aspects are interesting. Luckily, my boss was not eaten by the panther I watched walk into his office one morning. And I really don't have '2 right legs and 1 left leg' as I saw when looking down one day while working at my desk. Makes driving to work quite amusing too. But the most fun anyone can have on Dex is playing guitar in a biker bar on a Saturday night on the 4th day of a 40x4 pulse! Gggrrrrrrrr.....do they ever STOP requesting Freebird? Probably a lot like dealing with children in a classroom....a lot like it.

Did I read you were at 100K? I am so freakin jealous....I've never seen 100k. I'm elated with 20% of that.

Hey Guys,
So, as I always do, I wanted to update you! I went to the doctor today and the news was less than thrilling! As I thought, my counts continue to go down, down, down! They were 111 today...down from 277 last Friday. I am on 4mg of dex. So, needless to say, they keep dropping. However, I am not complaining about that count....as it is perfectly good and safe. However, I AM going to complain about staying on this drug for 4 more days! My hema is going to continue to wean and see what happens. I can pretty much suffice to say they will continue to go down...duh. I am hoping maybe they will stabilize in a safe range and I won't have to treat for a bit. But, I am going to stay positive and see what happens. I am thinking that if they stabilize in a safe range, I can get away without treating. If not, Rituxan will be on the table. As for right now, I just need to get through the first week or two of back to school. This ITP thing is crazy and man, the timing couldn't be any worse. And these steroids are even worse! However, I did just down a krispy kreme donut in 2 seconds flat without even feeling one morsel of regret!

Quick question to you guys out there....my hema was kind of nonchalant today and didn't meet with me in order for me not to have to pay. I am kind of ok with this....it makes me think...well, if she isn't worried, the I'm not. Is this too laissez-faire or do I need to relax? The steroids are making me crazy. Get me off this crap!

Oh, and my parent in laws are here for my husbands birthday and my mother in law is on prednisone too for radiation treatments. Should be an eventful weekend. BLAH!!!

Natalie

Did anyone see what I just read? two women Dex and Pred My first thought was the movie Monster in Law.



Daughter-in-law on dex + Mother-in-law on pred = ???



PS: I hope the weekend goes so wonderful that you forget about ITP and us!

Too funny Natalie about your mil also on pred. You should have a pig out weekend with her, just go crazy the two of you, good for bonding!
I was also able to drink more on pred...
Erica

Natalie,

First of all, you sound better! That makes me smile! Secondly, 2 women on prednisone aka dex, I am glad I am multiple states away! Tell you husband that the upstairs of our house is empty and he is welcome to it! LOL

Enjoy the weekend! And enjoy the moment! Keep up posted and tell your MIL that we have her in our prayers here too...

Jeffrey

Hey Guys!
It's me...again. Just wanted to post something and get some feedback. Guys, I'm telling you what....I can't even describe how terrible this drug is making me feel. When I go on Tuesday I am forcing her to talk to me about it. I keep telling myself that the way I am feeling is normal, but I did NOT feel like this on prednisone. On prednisone all that happened was I ate and got the dreaded moon face. I can deal with that. This is the devil drug from hell and I just don't even know what to do. I can't wait to talk to her, however, I am scared because I know that she won't just let me stop cold turkey...that could be disastrous...not just for my counts but for withdrawal, etc. Do you think she could switch me to prednisone? Let me lay out how I have been feeling:

I wake up at about 4 am every morning because I have to use use the bathroom (TMI, I know, but this stuff is making me pee like crazy). I toss and turn and eventually go back to sleep around 5am. I wake up around 8 WIDE AWAKE. I feel half way normal. I eat breakfast and take the dreaded dosage of dex (4mg). I feel half way normal and get a burst of energy. The day progresses. The energy starts to slow. By 3:00 I am in a complete stupor, brain fog and have so much intracranial pressure in my head that it feels like it is going to explode. It isn't painful (not like a headache), it literally feels like there is a balloon inside my head ready to pop. This feeling doesn't start until around 3 or 4 in the afternoon. Do you think this is a withdrawal symptom? By 9:00 I can hardly function and I am passed out. And the cycle continues. Prednisone NEVER made me feel like this. Albeit, I didn't like prednisone, but this is so. much. worse. I can't even describe it. Guys, please tell me this is normal. I'm getting scared.
Here are some other side effects I am seeing:
I am eating everything but, ironically nothing has a taste (someone mentioned steroids made food taste like cardboard) I get that now. I want to eat everything, but it really doesn't have a good taste. I also have a weird taste in my mouth.
I can literally feel the water in my face. It is as round as a bowling ball. It is disgusting.
My skin is so dry it is flaking off of my legs.
I am peeing every hour.
When I eat I feel like the food just literally sits on my stomach. Is it even digesting? I feel like a whale.
My moods are out of this world. I go ape shit one minute on my husband and then am totally fine and happy the next.
I am so hot. I can't stop sweating. I wake up periodically throughout the night and my heart is racing.
I haven't had any hallucinations yet, but I feel like they are just around the corner.
I am paranoid that something is wrong with me. My counts were 111 yesterday (safe, right?). Then why am I sitting here imagining them dropping DOWN DOWN DOWN. Is it the drug/paranoia? Or are they dropping? I am also freaking out that this drug is going to give me a brain aneurysm or something because it is literally driving me crazy. I just want to cry. This is the most horrendous experience I have had with ITP. I should be thankful because others have experienced much worse, but this is totally and utterly horrible. I would rather have low counts and a nosebleed than go through this guys. Can a taper like this bring on depression and anxiety because I am feeling it right now. It's getting so bad.

Natalie,

I think you need to call your doctor. Tell your doctor what you are experiencing. Stay calm as best you can but I would call. I am so sorry that you are going through this. Stay in touch!

Jeffrey

Switching from dex to prednisone I do not think should make much difference. They are similar glucocorticoids, but with different dosages to attain the same effect.

Unlike prednisone, dexamethasone has no mineralcorticoid potency, which may explain why it is used when higher glucocorticoid effect is needed. It should have less effect on your fluid balance.

Because dex has no meneralcorticoid effect, it should not be causing water retention. If there is excessive urination, I would definitely check for glucocorticoid-induced diabetes (don't worry, it is reversible!)

Dexamethasone also has a very long biological half-life of 36-72 hours. The observation that you are getting a brief period of dex energy is not consistent with its long half-life.

The only other long-shot explanation for your symptoms might be a pharmacy error. You can check your pills here: www.drugs.com/imprints.php .

Definitely call your doctor.

Also, check this out carefully: edrv.endojournals.org/content/24/4/523.full

Thus, after abrupt discontinuation of glucocorticoid therapy, patients may develop anorexia, nausea, emesis and weight loss, fatigue, myalgias, arthralgias and headache, abdominal pain, lethargy and postural hypotension, fever, and skin desquamation (Table 1⇓). Interestingly, the syndrome may occur during weaning from pharmacological high-dose therapy, while the patient is on adequate glucocorticoid replacement. This may also happen after the response of the HPA axis to stimuli has returned to normal (3, 4), indicating that long-term tolerance to glucocorticoids has developed and hormone substitution is inadequate to allow the central nervous system or other organs to function properly.

Yes, it is possible that you are tapering too quickly.

Thanks guys for all of your feedback. I am calling first thing tomorrow morning and I am going to discuss with her. I just don't feel right. Maybe I am having a reaction or something. Last night I had a terrible headache (probably a side effect from the taper). I had to take something for it (Tylenol) and it eased off, but I am just thinking...OMG. This drug is SO MUCH WORST than just having low counts. You know me and I NEVER say that....that can be an indicator for how much trouble I'm having. My personality has comepletely shifted and I am miserable. I told my husband last night that I hate everything...so not me. He is definitely encouraging me to call tomorrow, which I am! Hopefully I can get this figured out and tapered down and switched to something or nothing else. This just isn't me. Thanks for your support, as always. I love you guys.

Natalie

You should call your doctor. Don't wait til Tuesday, those side effects seem very uncomfortable.

The bad taste can be oral thrush, the dr can prescribe some mouth rinse. I have that all the time on steroids. The peeing a lot can be from high blood sugar caused by steroids. I have that also.

Do you have to start in with a new class of kindergarteners this week? This time of year can be stressful! I just had to tell my principal that I will have to be out at least the first 3 weeks of school. I'm sad, I always like this time of year at school.

Natalie - those all sound like typical steroid side effects. I lost my sense of taste too when I was on Prednisone and ate hot salsa every night so I could taste something. Dex is way more potent, so everything you feel will be heightened.

You're going to have to stop sometime, and 4 mg's is the lowest dose (I think), so I'm not sure how you'd taper even more than you are now. You really need to talk to your doctor about getting off of Dex. It could take a week or two to start feeling normal when you stop it, so this has been taking up a lot of your time and as I said before, may not be worth the torture.

Natalie

I'm sorry the side effects are so horrible. I agree with the others your doctor needs to check you as soon as possible.

As for the sitting there and thinking

Then why am I sitting here imagining them dropping DOWN DOWN DOWN. Is it the drug/paranoia? Or are they dropping? I am also freaking out that this drug is going to give me a brain aneurysm or something because it is literally driving me crazy.

Sounds like your having some panic attacks on top of everything else.

Have you ever tried and relaxation exercises? You need to try and calm yourself down. I want you too try a few things.


#1. Deep breathing. You take slow deep breath in and while you do it count than you are going to release the air slowly and count again. The goal is to focus on your breathing and trying to get yourself to be able to count to 8 each time. You need to close your eyes and you may also need to count out loud! If you find it hard try watching your stomach/chest rise.

#2. On the inside of your wrist when you bend it you will see creases. Place 3 finger horizontally at that point on your forearm. Just below where the fingers end you will place your thumb. Should be between your bones and tendon cords. You are going to press in on that spot with your thumb and your fingers will be placing pressure on the opposite side. Each time you do this you will take a slow deep breath in and out. Do this 3 times. When you are done with one hand/ arm do the other.


Do these as often as you need. They will help I promise!

You can't stop at 4mg dex as that is the equivalent of 26mg pred. You can get much smaller mg tablets down to half a mg dex so either keep going or ask to be changed over to pred and taper that. It'll still take you several weeks to get off it but you might not feel as bad.

If they come in a smaller dose, get crackin' on that then. Please call your doctor tomorrow.