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TOPIC: Hi Everyone, New Diag, just started Pred...

Hi Everyone, New Diag, just started Pred... 2 years 6 months ago #56032

  • Rob16
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Side effects list for dexamethasone:

www.rxlist.com/decadron-drug/consumer-side-effects-precautions.htm
DECADRON CONSUMER SIDE EFFECTS:
Stomach upset, headache, dizziness, menstrual changes, trouble sleeping, increased appetite, or weight gain may occur. If any of these effects persist or worsen, notify your doctor or pharmacist promptly.
Remember that your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects. Many people using this medication do not have serious side effects.

Tell your doctor immediately if any of these unlikely but serious side effects occur: signs of infection (e.g., fever, persistent sore throat), bone/joint pain, increased thirst/urination, fast/slow/irregular heartbeat, eye pain/pressure, vision problems, heartburn, black stools, vomit that looks like coffee grounds, puffy face, swelling of the ankles/feet, stomach/abdominal pain, pain/redness/swelling of arms/legs, tiredness, mental/mood changes (e.g., depression, mood swings, agitation), unusual hair/skin growth, muscle pain/cramps, weakness, easy bruising/bleeding, slow wound healing, thinning skin, seizures.

A very serious allergic reaction to this drug is rare. However, seek immediate medical attention if you notice any symptoms of a serious allergic reaction, including: rash, itching/swelling (especially of the face/tongue/throat), severe dizziness, trouble breathing.

This is not a complete list of possible side effects. If you notice other effects not listed above, contact your doctor or pharmacist.

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Hi Everyone, New Diag, just started Pred... 2 years 6 months ago #56046

  • Sandi
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Good luck. Dex is a tough drug to tolerate. It might get worse.

You should ask your doctor to check your potassium and magnesium.
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Hi Everyone, New Diag, just started Pred... 2 years 6 months ago #56048

  • Hal9000
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Of the symptoms you mention I had problems with sleep and a few zits. I became very hoarse though and suspect I may be a bit allergic to it.

It was the 5th and 6th days (the peak accumulated drug level) that were the most trying for me. Hard to describe, just really drained I guess. Hardest time to get sleep too.

There is a carrot on the end of stick though. It could do wonders for your counts :)
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Hi Everyone, New Diag, just started Pred... 2 years 6 months ago #56081

  • wquine
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Thanks Sandi & Hal, it has been more rough. Not a wink last night but once again no anxiety to go with it because of the suppressed fight or flight. But if it works it works although my hematologist said it would be likely that I'll need to do this 2-3 more times with the pulses. Is that right? I'm going to finish first pulse tomorrow and then get a CBC on Thursday. What should I be hoping, looking for?


Just a side question for all those that hover around the 10-60 range: Is it true that platelets carry serotonin to brain and does this explain why we are prone to depression?

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Hi Everyone, New Diag, just started Pred... 2 years 6 months ago #56085

  • Sandi
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Actual protocol is to do six pulses of Dex, one per month. Most people can't tolerate it that long. Many times, counts go high and drop quickly, so some people find that the pulses are not worth it. Maybe your counts will stay up and you will be one of the lucky ones.

As for serotonin, I've read that the amount carried by platelets is so small that it doesn't make much difference. Not all people with ITP feel depressed. I think depression has nore to do with the meds and dealing with the illness itself.
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Hi Everyone, New Diag, just started Pred... 2 years 6 months ago #56088

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Yikes, yes I'm feeling very numb and not caring, do not feel connected to my fellow human.

Sandi, if I could maintain 50+ counts without these drugs, should I insist on the watchful waiting approach after this pulse regime?

P.S. Eating my bananas and took magnesium pills.

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Hi Everyone, New Diag, just started Pred... 2 years 6 months ago #56089

  • Hal9000
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What to look for?

As I understand, steroids can increase the stomach production of acid. Might see if antacids helps with the stomach. Drinking small occasional sips of water between meals can also dilute the acid.

Others here talk about general body itching and especially intense itching when your counts crash (or you get a platelet transfusion). Everyone is different. Might take note of the day if that happens.

Blah. I think my counts crashed on day 7/8 but my first blood test was day 10. By then the count had crashed to baseline. It is good that you are getting tested Thursday. I think the case will be that if the count is above baseline count, the doc will want to do another pulse - repeat on day 28 of the first pulse.

Oh, almost forgot the best part. If your count is like over 100 on Thursday then excellent - might be on path to remission.

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Hi Everyone, New Diag, just started Pred... 2 years 6 months ago #56094

  • Melinda
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I'm not Sandi - but I'd say you do what you feel is best for you! There was a man in our ITP group that would meet every couple of months who could not get his count over 5k and he was doing just fine. We are all different - but you have to do what you feel is right for you. For me, I don't know if I'd do a pulse - that is me.

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Hi Everyone, New Diag, just started Pred... 2 years 6 months ago #56102

  • Sandi
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wquine wrote: Sandi, if I could maintain 50+ counts without these drugs, should I insist on the watchful waiting approach after this pulse regime?


Most doctors wouldn't treat with counts around 50k. The TPO's are usually dosed to keep patients around 50k, not above. It's considered to be a safe number and I don't know many here that would opt to treat if they could maintain 50. The trick is maintaining that magic number. Some do just fine at 30k too....it all depends on your comfort zone and symptoms.

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Hi Everyone, New Diag, just started Pred... 2 years 6 months ago #56147

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Perhaps my Dr should have just let me watchful wait? :sick: :sick: The withdrawal is horrible, just want to feel human again or feel anything, I really not coping well with the dex. I found the Pred to be much more tolerable... Just venting right now and seemingly getting every side effect that I read. Thanks for hearing me whine, I think we all can relate to how icky these treatments are. I certainly would reconsider not doing them at all right now but its a bit too late.

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Hi Everyone, New Diag, just started Pred... 2 years 6 months ago #56149

  • Hal9000
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Aren't you on day 6? Should be downhill from there. A little bit of all the side effects sounds familiar. Which has been the worst?

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Hi Everyone, New Diag, just started Pred... 2 years 6 months ago #56154

  • wquine
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Been off since Tuesday so now Thursday. Feel better today, mostly just real tried like a bad hangover. I think physically in my opinion that is the worst is leg pain which feels like there is a deep bruise but nothing hurts to the touch, just like a "phantom" deep bruise. I call this one the worst because I don't understand it. All the Acne, headaches, extra fat, reflux etc I can mentally understand what's happening. It's the things I don't understand and the mental parts that get to me most.

I cannot relate to emotions well right now, less enjoyment of music/art/people. Just do not have any vitality and that's not like me. I care deeply for our shared human condition and know its important but I'm just disconnected on this junk. Hoping tomorrow I'm much better... I did sleep last night and dreamt as well so looking forward to that.

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Hi Everyone, New Diag, just started Pred... 2 years 6 months ago #56156

  • Sandi
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Feeling disconnected is normal. It will get better. When I was on high doses of steroids years ago, my sister had an emergency appendectomy. My husband went to the hospital. I didn't go because I didn't care. I knew it was wrong to feel that way, but I just couldn't help it. I just thought, "Eh. She'll be alright". She was, but that isn't the point. :)

Don't beat yourself up over it. You will soon be back to the normal, caring person that you are. In the meantime, cut yourself some slack. It's the drug!
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Hi Everyone, New Diag, just started Pred... 2 years 6 months ago #56165

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Thanks Sandi, I feel once again a little better and more human today. Knowing I won't have to take another batch for over a week means this weekend will be the best I've had in a while. Thanks in part to this forum :)

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Hi Everyone, New Diag, just started Pred... 2 years 6 months ago #56188

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Hi wquine- I really understand about the Dexy. wohoa I could NOT tolerate the stuff! I felt so crazy bad, couldn't sleep day 3 and 4. I would just lay in bed hearing voices and noise in my head all night. On day 5 I was depressed, everything looked very dark and hopeless. I was always aware that it was the drug so in my case it wasn't true psychosis or depression but still misery.

My counts shot up to 97K then crashed down. 5 days of misery for 10 days of good counts- Not worth it! I swore I would never do it again, it seemed too hard on my body and mind.

I moved on to Rituxin- which didn't do much for me. Then onto Promacta and then Nplate. Nplate has been easy for me- good counts with little to no side effects. My mind is clear and feel good, good energy.

I've experienced drug induced depression twice. When beginning Promacta last year- felt very disconnected to my environment, lacking in creativity and curiosity- lack of interest. AND when coming off of prednisone earlier this year, I felt deeply like a failure in my career. Even though I knew it was the drug causing the depression, the belief that I was a failure seemed like a truth. So I thought yah, its the drug but I still failed. But whats weird is that I've been very successful in my career. It took a couple weeks to get over it. Made me realize again that these drugs can have a powerful negative effect so its important to be careful. Pick your poison wisely. Just because a doctor suggests or even insists on something doesn't mean we have to go along with it.

Honestly, if I could keep my counts over 10K I wouldn't treat. I would just watch symptoms. But I know from years of ITP that I don't tend to have problems with bleeding even at very low numbers. So part of the deal is to get to know your body and what is safe for you. good luck!
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Hi Everyone, New Diag, just started Pred... 2 years 6 months ago #56190

  • mrsb04
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Well said Posey. I'm trying desperately to maintain my count between 10 -30 by gradually dropping down my Pred dose. It's a juggling game as count crashes if I get a cold or any sort of infection which I have now so pred increased again yesterday as count at an all time low of 2.

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Hi Everyone, New Diag, just started Pred... 2 years 5 months ago #56215

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poseymint wrote: Hi wquine- I really understand about the Dexy. wohoa I could NOT tolerate the stuff! I felt so crazy bad, couldn't sleep day 3 and 4. I would just lay in bed hearing voices and noise in my head all night. On day 5 I was depressed, everything looked very dark and hopeless. I was always aware that it was the drug so in my case it wasn't true psychosis or depression but still misery.

My counts shot up to 97K then crashed down. 5 days of misery for 10 days of good counts- Not worth it! I swore I would never do it again, it seemed too hard on my body and mind.

I moved on to Rituxin- which didn't do much for me. Then onto Promacta and then Nplate. Nplate has been easy for me- good counts with little to no side effects. My mind is clear and feel good, good energy.

I've experienced drug induced depression twice. When beginning Promacta last year- felt very disconnected to my environment, lacking in creativity and curiosity- lack of interest. AND when coming off of prednisone earlier this year, I felt deeply like a failure in my career. Even though I knew it was the drug causing the depression, the belief that I was a failure seemed like a truth. So I thought yah, its the drug but I still failed. But whats weird is that I've been very successful in my career. It took a couple weeks to get over it. Made me realize again that these drugs can have a powerful negative effect so its important to be careful. Pick your poison wisely. Just because a doctor suggests or even insists on something doesn't mean we have to go along with it.

Honestly, if I could keep my counts over 10K I wouldn't treat. I would just watch symptoms. But I know from years of ITP that I don't tend to have problems with bleeding even at very low numbers. So part of the deal is to get to know your body and what is safe for you. good luck!


Spot on with the lack of sleep and the withdrawal. Prednisone was nothing compared to this horror. Not sure I can go through with another bout but my Hematologist seems to think a refill is in store. Not thinking about it right now as I'm currently just a pizza-faced fatso but I feel human once more.

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Hi Everyone, New Diag, just started Pred... 2 years 5 months ago #56216

  • Sandi
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Keep in mind that it's your decision, not his. You don't have to do it again if you don't want to.
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Hi Everyone, New Diag, just started Pred... 2 years 5 months ago #56396

  • Hal9000
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Hey wquine, how is it going?
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Hi Everyone, New Diag, just started Pred... 2 years 5 months ago #56406

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wquine, yours is an important post for me. thank you. I have not found allot of information about state of mind with ITP or the treatments. I was beginning to think it was me personally.
I have done high dose prednisone. I am really struggling physically and mentally. Allot of muscle pain and weakness, burning pain, itching, headachey, nausea, dizzy, and the fatigue is hard to describe. I can't really do anything. So I lay around like an old hound dog. mentally, I am confused, my brain feels like it's swimming, and emotionally I feel flat. So flat I am having a hard time doing what I have to do, make decisions, keep schedules straight, if it weren't for my hubby I don't even think I could remember appointments and guess what I 'don't care! :laugh:
I have been down to 10mg for about two and a half weeks, but I stay on 7.5 daily for Addisons' anyway. So I am kind of astonished that I am struggling so. I am not normally an unplugged or undetermined king of person.
I will start Rituximab on or about November 14th...I hope...my platelets are dropping again.
thanks again, Sandy Too
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Hi Everyone, New Diag, just started Pred... 2 years 5 months ago #56411

  • Sandi
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The taper gets harder at the end. You are feeling steroid withdrawal and Lupus symptoms combined.

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Hi Everyone, New Diag, just started Pred... 2 years 5 months ago #56419

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Sandy Too wrote: wquine, yours is an important post for me. thank you. I have not found allot of information about state of mind with ITP or the treatments. I was beginning to think it was me personally.
I have done high dose prednisone. I am really struggling physically and mentally. Allot of muscle pain and weakness, burning pain, itching, headachey, nausea, dizzy, and the fatigue is hard to describe. I can't really do anything. So I lay around like an old hound dog. mentally, I am confused, my brain feels like it's swimming, and emotionally I feel flat. So flat I am having a hard time doing what I have to do, make decisions, keep schedules straight, if it weren't for my hubby I don't even think I could remember appointments and guess what I 'don't care! :laugh:
I have been down to 10mg for about two and a half weeks, but I stay on 7.5 daily for Addisons' anyway. So I am kind of astonished that I am struggling so. I am not normally an unplugged or undetermined king of person.
I will start Rituximab on or about November 14th...I hope...my platelets are dropping again.
thanks again, Sandy Too


Also so glad you wrote this Sandy Too, so glad the words resonated with you and your do to me! There is just as much psychological stuff going on as the physical ailments, we are so complicated...

Thanks Hal for checking in. After getting up to 180 after the first week I then dropped right back down to 50 the week after. Felt pretty disheveled about the whole thing but the Hemo told me that he expects to do at least 4 runs of the dexa and encouraged me to keep trying. So now on day 2 of the next burst. So expect a few morbid posts coming up soon! :lol:

But again, thanks to all of you checking in, means a lot. Group hugs

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Hi Everyone, New Diag, just started Pred... 2 years 5 months ago #56433

  • Hal9000
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180? Wow I'm impressed. Nice. Is your doc doing 21 day pulses instead of 28 day, or ?
Was worried you had crashed and were bummed out.
Stay strong !

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Hi Everyone, New Diag, just started Pred... 2 years 5 months ago #56443

  • wquine
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The 180 was only 3 days after my first 4-day Dexa-pulse so I believe the steroids were in my system still at that point. Then it dipped to 50 which is still a little improvement so I'm grasping onto that although this time around I'm prepared with sleeping pills magnesium and bananas which will hope help a bit through this next pulse.

You asked about 21 or 28 day pulses and I'm not sure, right now I'm doing the 4day 40mg Dexa pulse with a couple weeks in between each run. Woke up early last night at 3 and did not get back to sleep but still doing better (i think) than my first time through but we will see how I cope with the withdrawal this time... but Yes thanks Hal, I'll try to stay strong!

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Hi Everyone, New Diag, just started Pred... 2 years 5 months ago #56496

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180 / 6 = 30. That pulse all but shut off platelet destruction for 6 those days. I think if your next pulse, and 2 week measure is more than 50, then excellent progress again.

Rightie-oh-mate, love those bananas, vit-D/mag/calcium vitamins...

Hoping for the best...

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Hi Everyone, New Diag, just started Pred... 2 years 5 months ago #56535

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2nd time around you know what to expect. This may actually help lesson how the side effects make you feel. Here's hoping 2nd time is easier!

I'm going to keep watching this tread because even though I'm not new to ITP I just did my first HDD treatment.

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Hi Everyone, New Diag, just started Pred... 2 years 5 months ago #56539

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Thanks for checking in. Certainly feeling worse for wear with a possible cold to boot. Cannot imagine working tomorrow like this but hopefully feeling better then. Very rough, feeling empty, everything hurts, some new pains, nasty stuff this is. Do not feel like doing anything, just very run down. Typing this out of support from you all otherwise I'd likely not bother just feel gross. Sorry. Want to come back on with some cheer next time. :( But you are right Winnifred, I know what's in store and that is better than the maiden voyage!

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Hi Everyone, New Diag, just started Pred... 2 years 5 months ago #56559

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Couldn't make it into work with this withdrawal+cold. Was not sure if anyone experiences what I would call an "electric eel" feeling where I do not like to be touched and feel like I have a sweaty chill electric feeling on my skin. Still feeling detached to my surroundings and praying that recovery is quick because I'm doubting the process right now. Also wondering how the cold will affect my counts this time round. If this has all been a waste I hope there's something to be gained for someone... to a better tomorrow!

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Hi Everyone, New Diag, just started Pred... 2 years 5 months ago #56560

  • Sandi
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Dex is hard to tolerate. Some don't make it through the whole six rounds. I have never tried it, but I've heard enough descriptions over the years. I hope it gets better soon.

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Hi Everyone, New Diag, just started Pred... 2 years 5 months ago #56562

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That sort of skin feeling would suspect flu coming on for me. Have you taken your temp?

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