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aggressive weaning from Pred. - question

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14 years 8 months ago #15458 by cat4christ
aggressive weaning from Pred. - question was created by cat4christ
Anyone else aggressively weaned off prednisone?
Maybe this isn't aggressive and I'm off the mark.
I was just curious.... what ya'll thought.
Last Wed was at 60 mg. Today 35 mg.
Tomorrow 30 mg. for 2 days, then reducing by 5 again.

CBC today 150k (I know that's great!)

25 years remission!
April 18, 2011 ITP back at 3K
Platelet transfusion
2 IVig's
IV prednisone
current oral dose at 25 mg
last count 5/27 at 147K

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14 years 8 months ago #15460 by tdecker
Feels aggressive to me. I was on 70 mg since April 14th and I had my 3rd rituxin infusion today. Last Monday before my 2nd infusion my platelets measured 135 after hovering btwn 45 -78 (with a low of 7); They then decided to cut my prednisone to 40 mg last tuesday. I thought it would be more tapered than that. I felt like a train hit me last Tuesday and Wednesday with flu like symptoms and unbelievable exhaustion. This could have been from either or both rituxin/prednisone. But it felt like it was H... week. I was just starting to feel good again this weekend and I got my 3rd infusion today and am feeling like I just ran a marathon again. I will find out tomorrow what my platelets are now/before 3rd infusion and what will happen next. But if I have another week like last week, I am counting the days until my 4th treatment (tue May 31st) and subsequent recovery.

Traci

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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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14 years 8 months ago #15464 by Sandi
It depends on when you started the 60. If it's been weeks or months, then the taper is too fast. If you just started it last Wednesday, you should be fine with side effects.

I'm not sure how it will affect your counts though. Sometimes a fast taper causes a quick drop.

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  • server
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  • newcreationchangingdaily
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14 years 8 months ago #15465 by server
I guess I tapered quickly. Was at 100mg, next day 80mg for 3 days then 60mg for 3 days then 40mg for 3 days. You get the point. I'm glad those days are over!

My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen

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14 years 8 months ago #15467 by cat4christ
Replied by cat4christ on topic Re: aggressive weaning from Pred. - question
I began about April 19th with IV doses (60 mg/day) in the hospital. So it was 4 weeks regimen when he starte my taper.

I thought it sounded quick, but it seems my hemo wants to try to get me off. He did mention if my counts drop and don't stabilize that the next treatment would be Rituxan, which he said has shown success in sending some into remission again. I guess since I responded so well 25 years ago to he's hoping it holds after the taper.

Thanks for the input, guys. I appreciate it!

25 years remission!
April 18, 2011 ITP back at 3K
Platelet transfusion
2 IVig's
IV prednisone
current oral dose at 25 mg
last count 5/27 at 147K

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14 years 8 months ago #15472 by Rhiannon
Replied by Rhiannon on topic Re: aggressive weaning from Pred. - question
Sounds like what I had in December and having now.

In Dec/Jan I started on two weeks of 60mg pred. Then went down to 30mg of pred etc... I can't remember the exact dosage all the way through without the box as that is at home. But I do know it was weekly.

My count went down last monday and was put back on 60mg pred. Today I started on the 30mg and this time it is for two weeks, then the next reduction..... But I am not reading anything into that.....

I think the main thing, is not how fast you are reducing them, but how the body copes with the tapering. If you are not sure then give them a ring and clarify it.....

My situation is also slightly different in that previous times I had a different consultant. He is retired now but always gave pred and IVIG. This consultant seems to think that I am pred responsive. Given that it has come around a lot quicker... but am willing to give him the benefit of the doubt though he had a suprise yesterday when he saw me as discovered allready had my spleen out....oops that option has gone for him. I gave him a breakdown of episodes - make it easier than reading through 16 years worth of notes. He seemed very appreciative though was in a chatty mood yesterday which is pleasanter for me for otherwise be a very boring mundane visit that takes all afternoon through where we live in location to hospital. But that isn't helping you any.

Your reduction programme seems normal in my own experience but I do not know what others do.... Good luck with it:)

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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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14 years 8 months ago #15475 by Sandi
You were at 60 for a month then dropped to 35? All I can say is if you feel the withdrawal, slow it down. It's not worth it. What's the hurry?

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14 years 8 months ago - 14 years 8 months ago #15483 by cat4christ
Replied by cat4christ on topic Re: aggressive weaning from Pred. - question
sorry, sandi. let me clarify. I was on 60 mg for 4 weeks, yes. Last wed. I began to taper.
Wed 60
thurs 50
Friday 40
Saturday 35
Sunday 35
Monday 30
Tuesday 30

what withdrawal symptoms could I experience?
Thanks!

25 years remission!
April 18, 2011 ITP back at 3K
Platelet transfusion
2 IVig's
IV prednisone
current oral dose at 25 mg
last count 5/27 at 147K

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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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14 years 8 months ago #15486 by Sandi
You'll know if you do. Fatigue, muscle pain and weakness, joint pain, depression, to name a few.
The following user(s) said Thank You: cat4christ

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14 years 8 months ago #15502 by lili
I usually find that I can drop pretty quickly until I get down to about 10 mg. Then I start to notice the withdrawal, so your taper doesn't look all that unreasonable to me. Your Dr. might slow it down when you get lower as well.

Lily
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14 years 8 months ago - 14 years 8 months ago #15584 by cat4christ
Replied by cat4christ on topic Re: aggressive weaning from Pred. - question
Well, gang, I figured I'd log my side effects from tapering off of the prednisone so if anyone else did a search wondering, this would pop up.

I've hit a wall today. Walked 2 miles this morning and it's gone downhill since. I'm extreeeemely tired. And my legs and arms feel like they're heavy as cement. I didn't sleep well last night (nothing unusual there), but feeling as if I could take a nap any time now.

Last couple of days have had a headache, today isn't as bad as though.

Also, did have an emotional "moment" this afternoon where all of sudden I just started to well-up with emotion and had tears. Not all out bawling, but this sadness just came over me.

Like I said, just logging this hoping this helps someone looking for some symptoms of tapering.
off to get through my day. :(

Good news, my counts today were 147K!!!!

25 years remission!
April 18, 2011 ITP back at 3K
Platelet transfusion
2 IVig's
IV prednisone
current oral dose at 25 mg
last count 5/27 at 147K

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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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14 years 8 months ago #15590 by Sandi
Cat - if you walked two miles, you're doing good! During Prednisone taper, I could barely walk 50 feet. I also cried once for 2 days straight.

Hang in there!

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14 years 8 months ago #15612 by milly
Cat, walking two miles that is amazing. I found the emotional side of pred the hardest to deal with, it was nothing for me to just cry anywhere, anytime I was a wreck and my taper was so slow. I started on 75mg and only decreased by 5mg either fortnight or month I felt like it was forever,took 10 months in total.

It is really tough and everyone wants to know what is making you sad but if you are like me you have no idea, could be anything or nothing.

It's good your counts are going so well, I hope you day improves.

There is no practice run in life.

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14 years 8 months ago #15615 by cat4christ
Replied by cat4christ on topic Re: aggressive weaning from Pred. - question
My day did improve, but I was ready certainly ready for it to come to a close!
Once again, I'm thankful God is sparing me the more severe reactions I could be having. To just know I'm not going nuts with the emotions and that there is a reason my body feels like this helps me to deal with it. Thanks Sandi and Milly!

25 years remission!
April 18, 2011 ITP back at 3K
Platelet transfusion
2 IVig's
IV prednisone
current oral dose at 25 mg
last count 5/27 at 147K

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