Question RE: Dex update

Just looking for clarification platlets 24 so supposed to start my Dex pulse 40mgs x4 days tomorrow. Doctor said take it in the am and pharmacist said take it with supper??


Which is it morning or supper time???

Thanks in advance

Ha, I'd take it in the morning with food.

Good luck!

My doctor didn't give me guidance so I assumed it didn't matter. Defaulted to morning with breakfast.

FYI, like other steroids, Dex increases stomach acid production so take measures to protect your stomach if you are sensitive to that.

Noticed that you go way back on PDSA, including Rituxin remissions. Curious, what has Pred done for your counts in the past? Raise you up to 60 or much higher? Did IVIG raise counts equally well?

Hope Dex works well for you.

I'd take it in the morning

Hal9000 Prednisone was the very 1st treatment I ever tried. Doctor gave me 100mgs a day. Brought my counts up to the normal range within a month. Doctor said I was cured and sent me home. I was 29 just celebrated my 49th birthday in July apparently he was incorrect!


Prednisone also made me gain weight, gain facial hair, not sleep well, think spiders could talk and be my friend, scare my kids, and then gave me hives. I refused to ever take it again. After pred came IVIG, Cyclophosphimide (sp), Rhogam/ Winrho, and Rituxan. All worked but apparently I do not like the side effects so now I'm trying Dex.


Because Dex is in the same catagory as pred I am to watch for signs of an allergic reaction. My hope is that because it has different ingredients it will work and I won't be allergic.

Whoa, 100 mg Pred ? Friendly spiders? Do you have an old B grade 50s movie about 'spiders from mars' buried deep in your childhood memories? LOL

With a track record of getting a response to everything, do you suppose the doctor is hoping to throw you back into remission with the Dex?

I've read about folks on here where Rituxin eventually becomes non beneficial to counts. Does that make any sense to you? I realize this is not your case with Rituxin (itching issue et al). Any thoughts on the subject anyhow?

Seems like the mode of ITP would have to change for Rituxin to stop working. I dunno, like going from B cell mediated ITP to Gamma-delta mediated ITP. If that is so, that would suggest a good response to Pred or IVIG may end after now poor response to a Rituxin treatment.

With the talking spiders being your friend I'd watch out for that stuff with Dex too. There was a lady here, tofer/Julie, years ago who on prednisone thought her husband was trying to kill her, she called the cops, and I can't remember what else. But she was a mess. So I'd think being in the same category you could be talking to spiders and worse. Be careful (know you are though).

Were you ever able to let that dear doctor know you were NOT cured 20 years ago? My hematologist years ago told she didn't need to see me again when my count went up to 401k - only to seem me again when my count bit the dust a week later.

HAL9000, if you think 100 mg of prednisone is a lot, consider that 40 mg of dexamethasone is the same as 280 mg of prednisone.

Julia, if you were not joking about talking spiders (and I don't think you are joking!) you should make sure your doctor knows, and have a "buddy" who is checking up on you to make sure your symptoms are not too severe. Steroid-induced psychosis is very real. I have seen it. It can be treated with atypical psychotic medication, such as risperidone. (As an aside, I wonder if lower doses of antipsychotics could be useful in preventing some of the more subtle mood changes, such as insomnia and irritability.)

Here is a very readable discussion of the topic:

www.the-rheumatologist.org/article/when-steroids-cause-psychosis/2/?singlepage=1
When Steroids Cause Psychosis The Rheumatologist October 1, 2010
Corticosteroids are used to treat inflammatory manifestations of many rheumatologic conditions. ... In this setting, one out of every two to three patients prescribed steroids may develop psychiatric symptoms including psychosis, mania, delirium, and depression.

Hal9000 The first time I took Rituxan I had 6-7years remission. The 2nd time I stopped treatment on the 3rd dose due to side effects and got a years remission. So yes because I respond so well we hope for remission but auto prepare for a drop.

Melinda I remember Tofer/Julie I remember her telling the story did she not say she was at the hospital when she ran and made the call?? After his cured statement I hit zero something like 3 months later. So yea I think he knows he was wrong lol

Rob16 When I have told doctors that story I get the same response. Prednisone psychosis that's a typical side effect and that wouldn't stop them from using it. When I broke out in itch with patches of redness from head to toe that is when I demanded my doctor to take me off of pred. When I tell doctors I broke out in hives they all say "It's used to treat hives".
PS: got more then one buddy to check up on me this weekend. (one actually works in crisis so I think I'm covered)

Rob16 I got a question your fantastic at research. Ever read anything about Dex pulse making someone extremely tired/ lethargic or it dropping BP. I took my first dose this morning and I am beyond ready for a nap. I just guzzled 2 large pepsi's in hopes to perk me up.

Just because steroid-induced psychosis is typical does not mean it should go untreated.

You might want to switch to sugar-free Pepsi!
Steroid-induced hyperglycemia can cause fatigue, and hyperglycemia can cause dehydration resulting in hypotension.

Steroid-induced depression and steroid-induced myopathy are other possible causes of fatigue.

www.ncbi.nlm.nih.gov/pubmed/23588576
Aggravation of fatigue by steroid therapy in terminally ill patients with cancer.
Abstract: Steroids are commonly used for fatigue relief in terminally ill cancer patients. However, steroid-induced adverse effects including depression, myopathy, and hyperglycemia may contribute to fatigue...

Don't forget about Beagle Girl. She wanted to eat her dryer lint. Oh the joys of steroids. Good luck, Julia!

Wish I could remember the details Julia but don't - I know she had a hell of a time though. What you said is beginning to sound familiar. I would think that if one has that kind of problem they wouldn't be allowed to have it again. Keep us posted on how you are doing!! And a huge raspberry to those doctors who said "it's used to treat hives" - give them all a humongous dose of steroids [or Dex] for weeks on end and then see what they say.

Sandi you got my memory working - yeah, I remember Beagle Girl now. All these are just more cases of the treatment worse than the disorder.

Winni, about the lethargic/BP issue. I remember on the first day, standing up quickly and feeling a little dizzy. Isn't that low BP? It only happened on the first day for me...

Hal9000 I was thinking that but steriods shouldn't lower BP they raise it. But yes sometimes that is what it is like. I am not too worried only 4 days so after a week I should be feeling right back to normal.


Rob16 - Thank you! I'll be doing some reading! I try doing searches even when I was in school and I can honestly say I "suck" at it!

Fell asleep somewhere between 10-12 pm woke at 3am. Day 2 hyper/ high, Headache and redness in the face (thinking related to a higher BP), Jitters, periods of feeling like I could fall asleep in a second then switching back to the jitters and feeling high.

It's 830 pm and I'm wide awake just getting ready to go out. Medication is in purse with time of last dose and the 4 dates I'm taking it. Designated driver knows my issues and that I'm carrying the medication incase something happens.
Have spoke to co-workers to let them know I maybe calling in tomorrow night if I'm still feeling like this. Can't be the Nurse Manager of a building and acting like your higher then a kite!

2 more days I can do this lol not looking forward to coming off the med! but I can handle it!

Thank you everyone for your advice and help!

Don't get any fancy ideas with spiders :laugh:

I hope with all this Dex is putting you through that you will get a decent count and be stable for a long time to come!! (I really don't think I ever want to have to use that drug - I will never say never though as that comes back to bite one in the bum)

Day 3 got about an hour of sleep last night. took my medication and laid there staring into space. Just ate lunch and i'm still feeling starved. apparently today I have the feeling of bugs crawling on my arms but reality is none are there. Only 1 more day whoohooo!

Okay then. You are still in reality! No bugs! Tell us if you start to see them.

Thanks Sandi that gave me a laugh.

On that note I will follow your instructions. If I start seeing them you'll be the 1st to know right after I check myself into a psyc ward! lol

Last day last dose. Shaky headache feeling antsier. Having episodes of itchiness but no real sign of rash or hives. Thinking its just a crawling sensation but I am watching. Either way it is day 4 so what every is starting won't get a chance to get worse! Trying not to scratch to prevent me making it red so I can monitor properly!

Crossing my fingers I don't come down to hard. It is Halloween thinking I may walk to the store get some Halloween candy to much on since I'm so hyper maybe order a pizza for supper and just watch movies all night!

Winni, the 5th and the 6th day of Dex were hardest for me. It's the worst of withdrawal/taper I suspect. Kinda of a 'drained' feeling. Also, my taste buds were way altered. Especially sugar - lost its taste.

LOL, yea watching TV shows most of the night rings a bell

Just showered to get ready for work! I'm itching all over and didn't realize how bad I was scratching myself till I saw me in the shower. Got sleep today took a melatonin to help. Just took 1/2 benadryl to stop the itch. Jittery don't like that feeling but other than that i'm good I think!

Saying a little prayer work will be quiet no emergencies.

Made it through 2 nights of work. Feeling bloated big time trouble breathing (from me eating too much). Went for blood work this am lab tech pulled the cotton ball away and an instant bubble of blood formed.

The awkward moment when you and the lab tech look at each other both thinking the same thing. One too many pokes!

My feeling bloated has settled been voiding ++++ and as that happens I feel better.


My platelet count 124 up 100 from last wednesday!

Congratulations on the improved counts! Hopefully as you get further past the steroid administration you will start to feel a bit more normal. Hang on to those platelets!

Winnifred, nice!

Ok, there was no formal agreement to share them before you started, so..., guess you can keep them

Yea sorry Hal I don't share!


One new development started with trouble using Lt arm yesterday so bad today could not squeeze the toothpaste. After spending 7 hours in emergency multiple tests, 1 quality of life vs quantity of life speech. Doc says my issue is because of Dex and i'm on light duties for 3 days.

NO lifting anything with left arm. If it's not better in 3 days he says I need to go back!

Corticosteroid-Induced Myopathy?

First I have heard of that one!