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Tapering Steroids

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9 years 4 months ago #55657 by Sushigrand
Tapering Steroids was created by Sushigrand
My husband was diagnosed with ITP beginning of August. He has been through IVIg, heavy steroids and his platelets continue to fall to below 15. Since he is steroid refractory case, he is looking at the next line of treatment, most likely Revolade along with Dapsone.
He was last on Prednisone 60 mg/ day. What would be ideal tapering for steroids? He has consulted with two hematologist and they both have given very different tapering advise.
Can someone please help.

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  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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9 years 4 months ago #55658 by mrsb04
Replied by mrsb04 on topic Tapering Steroids
There are several threads on the site regarding this. My advice is very slowly
The following user(s) said Thank You: Sushigrand

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9 years 4 months ago #55667 by Rob16
Replied by Rob16 on topic Tapering Steroids
The need for steroid tapering is based on science, but in practise it is more of an art. In addition, part of the reason your husband is getting two different opinions may be that there are two separate issues regarding tapering.

The first issue is that one's body becomes "dependent" on prednisone, in two ways, and each way one will experience some discomfort as their body adjusts.

At the cellular level, the cell chemistry adjusts to the presence of prednisone, so when one decreases from, say, 60 to 40 mg their body will need to adjust back to the lower level before they drop again from, say, 40 to 30mg.

Also, prednisone suppresses the production of cortisol from one's adrenal glands. (Cortisol is the body's natural form of prednisone. Prednisone works by mimicking cortisol.) If one has taken prednisone for a significant amount of time, their adrenal glands will atrophy (weaken) and will not be able to fully take over when prednisone is removed. One's body normally produces cortisol in an amount equivalent to 7 to 10 mg of prednisone per day, so one must taper especially slowly, in very small decrements, from 10mg to zero, as the adrenal glands need time to recover. The amount of time involved depends mostly on the length of time one was taking prednisone. In your husband's case, he has not been taking prednisone long, so this is not such an important factor.

The second issue is that if one's platelet levels have improved while taking prednisone, removing the prednisone slowly gives them a better chance that their platelets will not drop afterward. I don't believe that this theory has actually been studied, but it is generally accepted as true. In your husband's case, if he did not have any improvement from prednisone, then he doesn't have anything to lose.

Here is a thread discussing the hazards of tapering too quickly. However it mostly applies to people tapering off of prednisone after lengthy treatment.

pdsa.org/forum-sp-534/7-treatment-general/29130-steroid-tapering-secondary-adrenal-insufficiency.html#54152

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  • 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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9 years 4 months ago #55670 by Sandi
Replied by Sandi on topic Tapering Steroids
How long was he on Prednisone and what are his counts? The taper should take those things into consideration.

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9 years 4 months ago #55709 by Sushigrand
Replied by Sushigrand on topic Tapering Steroids
Rob, Thanks for this excellent information. Yes, you are right he hasn't been on steroids for too long.

Sandy,

He has been on the following dose -
7th to 10th Aug - 60mg Prednisone
11th - 14th - 40 mg Dexamethasone pulse dose (4 days)
25th Aug - 4th Sept - Restarted 80mg Prednisone
5th Sept - 12th Sept 70 mg Prednisone
13th Sept - 21st Sept - 60 mg Prednisone

Since he is a steroid refractory case, the haematologist has advised quick tapering @ 10 mg every 2 days until 20 mg. Thereafter stay at 20 mg( not sure as yet for how long).

does this sound ok?

thanks so much!!!

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9 years 4 months ago #55710 by Rob16
Replied by Rob16 on topic Tapering Steroids
Did your husband's platelet count respond at all to either prednisone or dexamethasone?
If not, why will he stop tapering at 20mg.?

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9 years 4 months ago #55711 by Sandy Too
Replied by Sandy Too on topic Tapering Steroids
Interesting Rob, I have Addison's disease, Primary. I have often wondered about the drug I love and hate. I have never studied it, maybe I should. At lest for me with regard to the high dose treatment I find myself on now for ITP, I don't have to worry about harming my adrenals!

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  • 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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9 years 4 months ago - 9 years 4 months ago #55715 by Sandi
Replied by Sandi on topic Tapering Steroids
Sushi - if he is steroid refractory then you don't have to worry about his counts dropping with a fast taper. The main problem will be withdrawal symptoms which can be pretty bad if a taper is too fast. You get it over with faster but it can be much harder on the body.

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9 years 4 months ago #55716 by Sushigrand
Replied by Sushigrand on topic Tapering Steroids
Rob,

Thanks! No, he didn't respond to either of the steroids. Not sure why the haematologist asked him to stall at 20. I guess he will eventually taper him off that as well. We will meet him prior to get an understanding from him.

Sandy,

Makes sense.... I guess he is happier getting off the steroids faster. He was on 40 today and says he feels much better :) .

Thanks! Again

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