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dexamethasone

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14 years 5 months ago #14132 by iam4ual
dexamethasone was created by iam4ual
I was put on Dex on Tuesday for a pulse of 40mg for 4 days. I have just began my 3rd day. On Tues my count was 11000 but I was not bruising, I am on the steroids for 2 days and I am bruising. How long does it take for Dexamethasone to work. SHould I call the dr? I really am not showing any other problems no bleeding at all. I only have found 3 bruises and they are small, and not really dark mostly blueish and on my hand.

My question I guess is when do you worry? I just feel like I worry all the time. I just want to know when I should worry? Maybe I shoud just be calm unless i see bleeding maybe.

Shannon
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 5 months ago #14143 by Sandi
Replied by Sandi on topic Re: dexamethasone
Shannon:

It can take a few days to work. I don't think I'd worry about a few small bruises, especially if your count was 11,000 anyway. Since the weekend is coming though, it might make you feel better to call and get a count. Would your doctor do anything else if counts were any lower?
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14 years 5 months ago #14215 by iam4ual
Replied by iam4ual on topic Re: dexamethasone
Sandi, How many people actually get remission on Dex? I read a few things on the web that said that some actually get long term remission on DEX pulses. Long term being 1 yr or more. Are these ones that did not get it from prednisone or would prednisone do this too? My Dr seems to think that DEX is better.
Shannon
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 5 months ago #14218 by Sandi
Replied by Sandi on topic Re: dexamethasone
Shannon:

It depends. There is supposedly a protocol that if followed, can cause remission. The protocol is 40 mg's of Dex for four days, once a month for six months. There have been studies that quote success rates, but I don't know the actual numbers. The studies also say though that the treatment is "well tolerated". There has not been one person who followed that protocol who tolerated it well (on this board).

Dex can be better than Prednisone for some people. Some get a fast drop after stopping it and some do not...it depends on the response and how many times they did the pulse.

I know that doesn't really answer your question, but there isn't any real answer.


www.medscape.com/viewarticle/460586

general-medicine.jwatch.org/cgi/content/full/1994/614/1
14 years 5 months ago #14228 by
Replied by on topic Re: dexamethasone
Oh the old discussion group the protocol for treating ITP was linked or posted - is it here? I can't find it if it is.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 5 months ago #14236 by Sandi
Replied by Sandi on topic Re: dexamethasone
Yeah, I kept digging last night for one of those articles..there used to be a lot of them. Couldn't find one.
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14 years 5 months ago #14659 by chrislin
Replied by chrislin on topic Re: dexamethasone
i was on dex on late january after diagnose with itp. i did not get IVIG as i have also antibodies in my blood.

was on high dose dex for few days during my few days admission, my platelet count went up pretty fast.. and then tone down dose of dex for approx 2 to 3 wks before switch to predisolone and stop..

relapse is possible when u r under stress or any illness which causes your immune system to go low.

so i did get dex and predisolone during my treatments.. in addition with iron tab, cal tab, nystatin oral suspension (cos high dose cause mi to have oral thrush) and omeprazole (so far well tolerate)

however its quite fustrating tat i had a recent relapse again cos mi and my haematologist had tried stopping prednisolone and within 1 week it relapse.. i can't rule out tat i m on stress lately and didnt get to slp well either.
this time i was given predisolone 60mg.. and then it goes up again..

to your concerns on bruising.. u have to becareful not to knock yourself.. minor small brusing shouldn't be a big concern.. any pain from heads or trunks u have to becareful as we r prone in bleeding when our platelet is low.. and ps our calcium level also goes down to drain when we r on steroids..

hope this helps alittle..
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14 years 5 months ago #14704 by GregK
Replied by GregK on topic Re: dexamethasone
I am taking dex for the first time in my history with ITP. Same dose, 40mg for four days. Current count is 16, I'll do a blood test on Monday after the dose is finished and update my count to see how/if it worked.
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14 years 5 months ago #14852 by GregK
Replied by GregK on topic Re: dexamethasone
Let me just say that I despise dexamethasone. I took my last of the four day dose on Saturday and I feel like living hell right now. I had maybe 2 hours of sleep last night and I am walking around today in a daze. I've an appt at the blood lab this morning and I am hoping and praying that my counts have jumped a bit.. I really don't want another does of this dex. As sad as it sounds I would take a heavy dose of prednisone over this stuff any day.
The following user(s) said Thank You:
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14 years 5 months ago #14854 by iam4ual
Replied by iam4ual on topic Re: dexamethasone
Greg,
So sorry for your side effects. I do not have major side effects with dex. I did have bad sideeffects with Prednisone though. I could always sleep but I always felt like I wanted to snap everyones head off. This was not as bad with the Dex. I have to say that Prednisone brought my counts higher for the most part than Dex but Dex did bring them up. I am due to start another pulse tomorrow. Not looking forward to it but hoping it will bring my counts way up.

I guess some have bad side effects with Dex and some do not. Thank God I am one that the side effects are tolerable.

Let us know what your counts are today.
Shannon
14 years 5 months ago #14856 by
Replied by on topic Re: dexamethasone
Somehow I clicked the Thank You button instead of the Submit button.

I said I had not heard of dex until coming to the pdsa discussion group a number of years ago - reading up on it I decided that's something I would hope to avoid.

In 2002 when I came out of "remission" my hematologist reached for her prescription pad - I told her I would not take prednisone and look like the Pillsbury Dough Boy for our son's wedding, the color of my dress would compliment the color of bruises. I didn't take it but had WinRho instead and have been back in a "remission" [below norm counts, no treatment] since.

I'm sorry I'm not aware of what other treatments you have had. But I think what we need to remember is we should be able to talk to our doctors, tell them how we feel and what is going on - and they should work with us. Be sure to let your doctor know!

Hope your count is wonderful!
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14 years 5 months ago #14879 by chrislin
Replied by chrislin on topic Re: dexamethasone
i do have slpless nights too after dex or predi. but i guess it should be alright if u get frequent small naps during the day.. wat i experience is i wont really have deep sleep.. does it happen to everyone with side effects of dex or predi?
but do let your doctor know tat u had slpless nite. i tink they will do something abt the drug :)
hope your count goes up :)

LETS PRAY, HOPE AND STAY HAPPY EVERYDAY :cheer:
14 years 5 months ago #14881 by
Replied by on topic Re: dexamethasone
Dex does the same thing to me Greg.....I abhor the stuff.
.
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14 years 4 months ago #14886 by iam4ual
Replied by iam4ual on topic Re: dexamethasone
Okay guys, I am starting another pulse of Dex today :( Not excited about it at all. Hoping it will put me into remission. THis is my second pulse.

I do have a question. If my counts are normal after this then should I not do another pulse? Surely, my dr will not ask me to do another if I have normal counts. I will take a low count in livable range though. My count last time was 98000 and my dr wanted me to go ahead and do another pulse. :angry:

Thanks
Shannon
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14 years 4 months ago #14889 by GregK
Replied by GregK on topic Re: dexamethasone
So I got my results back this morning. Count is at 187 B)

So it seems like the pulse worked.. for now.

Shannon - for what it's worth what my hema just told me this morning was that if the pulse works she wants to leave it well enough alone. I'll have to do weekly cbc's just to make sure the count stays up though, but I can tell you I don't ever want to take this drug again.
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14 years 4 months ago #14911 by iam4ual
Replied by iam4ual on topic Re: dexamethasone
Greg, I hope mine are up that much. My hema does not want a count until 2 weeks after off Dex. But I think I might go to my regular dr and get a count next week just for my peace of mind.
Shannon