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steroid tapering experience, advice please

dru
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I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.

12 years 10 months ago #31294 by dru

Replied by dru on topic steroid tapering experience, advice please

Florence,

Your understanding sounds right to me based on my experience.

My counts were 327k last week on 20mg and this week 227k on 15mg pred.

I am going to 10 mg this week and then we will see next Tuesday where they are. For me the counts stay up at 10mg but quickly fall below 30k on 5. Maybe this time will be different. But anyway hope to get at least a few more weeks before I have to consider a different treatment.

Dru

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Lori
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12 years 10 months ago #31338 by Lori

Replied by Lori on topic steroid tapering experience, advice please

Thanks DTMedic for the info on the dex treatment...doesn't sound like something I would want to jump into with the steroid side effects I already get on prednisone. I've been on pred since last August (started at 70mgs with weekly taper until off in September). Thru October, counts dropped from 150 to 107 to think 53, so put me on 40mgs and now finally down to 10mgs every other day until tomorrow as the last months count was at 156. Never got that real spike in platelet count, even when on the 70mgs...think the tops was this last one at 156.

So with all that, guess prednisone does work for me but unless it lasts it may be a long year of 10mgs. I have a family history of osteo, so really disturbing that it might be the drug of choice to keep my counts stable. The calcium and other osteo drugs have gone thru the gambit of not really helping and causing other issues with my family members.

Will see what the next few months bring with the counts and hope this will be it for a while.

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florence
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12 years 10 months ago #31389 by florence

Replied by florence on topic steroid tapering experience, advice please

Hi, I had my count as 147 today, which is good: up from 80 with the dose decreased from 3mg to 2.5mg per day. I will be on 2mg since tomorrow. The doctor suggested 2.5mg every other day, but I insisted on a slower tapering of 2mg per day. if the count is fine next week, wound try 2mg or 2.5mg every other day.

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dru
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I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.

12 years 10 months ago #31392 by dru

Replied by dru on topic steroid tapering experience, advice please

Wow, that is great! That is a good increase to have during a taper. You could be off in a couple weeks. Are you having any steroid withdrawal symptoms?

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florence
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12 years 10 months ago #31395 by florence

Replied by florence on topic steroid tapering experience, advice please

Thanks, dru. I haven't had any withdrawal symptoms so far. Maybe my body or the dose of steroid I took helped me to keep a reasonable level for my body to function. I guess I might have withdrawal symptom when I come to the every-other-day tapering.

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Lori
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12 years 10 months ago #31410 by Lori

Replied by Lori on topic steroid tapering experience, advice please

That was great news Florence. I'm off now from the 10mg every other day and think that if counts go down it wouldn't matter if stopped now or later as will just see if the adrenal gland is going to kick in or not and take over production.

Had my 2 days of sleeping as being off wipes me out for a week..or it could just be a bad sign. Either way won't know until the 22nd. I hope your taper keeps working as well as it has.

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DeeDee Marie
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12 years 10 months ago #31473 by DeeDee Marie

Replied by DeeDee Marie on topic steroid tapering experience, advice please

I also did the Decadron pulses. I did 4 days on high doses, went two weeks--then another 4 days of high doses. Did this 4 times, but I think 2 or 3 would have been sufficient as my platelets had already gone up. I've been in remission for a little over 2 1/2 years. I also did this treatment the first time I had ITP (which was in 2006). From what I've heard, I think the Decadron pulses work better for those patients who have not had a lot of other medications: Rituxan, Promacta, or N-Plate. I heard this at an ITP conference in Los Angeles years ago.

Just my thoughts.

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Lori
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12 years 10 months ago #31587 by Lori

Replied by Lori on topic steroid tapering experience, advice please

It was a SUPER day!

Off prednisone for a week after the 10mg every other day and count still at 153...woo hoo!

Got the B-12 shot (only because I was there) and even have my 'normal' energy back.

Even if it doesn't last, I'm not going to think about it until April 19th when he wants to do another check.

I'm just thrilled to be off prednisone. It may be a wonder drug but it really does a number on me.

Florence, I hope your taper keeps working for you.

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dru
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I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.

12 years 10 months ago #31589 by dru

Replied by dru on topic steroid tapering experience, advice please

Lori

That is great news! So glad you are off the prednisone... Must be nice. I am on 5mg and hope to get off next week depending on my counts.

Dru

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DTMEDIC
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12 years 10 months ago #31592 by DTMEDIC

Replied by DTMEDIC on topic steroid tapering experience, advice please

Lori...so glad to hear you're off the prednisone and counts are hanging in there!

Debbie

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florence
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12 years 10 months ago #31620 by florence

Replied by florence on topic steroid tapering experience, advice please

Lori,glad to know the good news. I hope your count would stay at the normal range.

My count this week became 63 even with 0.5 mg deduction. my doctor thought that the up and down of my count in the past weeks might just be volatility despite the dose. I am continuing my tapering from 2mg/day to 2mg every other day. will have the test next week to see how the count goes.

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Lori
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12 years 10 months ago #31631 by Lori

Replied by Lori on topic steroid tapering experience, advice please

Florence, sending good wishes your way that the taper continues and that the counts stabilize in a good range.

Even though I'm not going in for counts for a month, hema really wants a check in 2-3 weeks if I'm up at the clinic.

I get the feeling that they really believe that prednisone will only increase counts while we are on it and stated if by chance I had some other appointment before then to get a test run before April 19th.

Such confidence they have in these drugs for a remission.

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dru
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I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.

12 years 10 months ago #31768 by dru

Replied by dru on topic steroid tapering experience, advice please

The doctors don't really know for sure what will happen when we go off prednisone. There really is no way to predict. For me, I have always fallen quickly below 30k when on 5mg pred or less. But this time makes no sense at all based on previous treatment since 2005....

These were my recent results
2/2013 329k on 30 mg pred
The ne xt week. 229k on 20mg
The next wk 229k on 15mg
Then 70k on 10mg
The following week 369k on 5mg....that was last week and I was so surprised and happy! But I think I should stop trying to make any sense of it.

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florence
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12 years 10 months ago #31780 by florence

Replied by florence on topic steroid tapering experience, advice please

It seems a good trend for your counts during tapering, dru. The process below 5mg may need to be cautious. I was fine with 5mg, but crashed below the dose before.

My count this week is 80 after coming down to 2mg every other day. Now I am completely off steroid and will have the counts tested the week after next.

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dru
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I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.

12 years 10 months ago #31781 by dru

Replied by dru on topic steroid tapering experience, advice please

Thanks, Florence....
My doctor believes that the tapering below 5mg is more for decreasing withdrawal symptoms than for keeping counts up. I find usually that once my counts get to 70 they just keep going down even if I stay on 5mg. Something is different this time. But I do still have the para thesis I always get when relapsed with itp.

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Lori
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12 years 10 months ago #31793 by Lori

Replied by Lori on topic steroid tapering experience, advice please

Wow, dru. I never got that high of a count on prednisone, even at 70mg. It would be great if it would stay up there. They got me going back for counts on the 8th just in case going down then will probably put me back on 10mgs again..ahhh! My brain is feeling back to 'normal' now that I've been off prednisone for couple weeks and really, really, really want to stay off it for a while.

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dru
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I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.

12 years 10 months ago #31795 by dru

Replied by dru on topic steroid tapering experience, advice please

Lori wrote: ! My brain is feeling back to 'normal' now that I've been off prednisone for couple weeks and really, really, really want to stay off it for a while.

Yes, I know just how you feel after many prednisone treatments and tapers. Hopefully you can stay off this time. I'm hoping my counts will stay up but you never know.

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Melinda

12 years 10 months ago #31807 by Melinda

Replied by Melinda on topic steroid tapering experience, advice please

I probably did the slowest taper ever - but won't go into that, lived overseas at the time.

Lori I'm not familiar with your situation. After my taper I was in "remission" for a number of years before a tetanus booster took me down. My hematologist got her prescription pad out to give me prednisone - I refused, told her I would not look like the Pillsbury Dough Boy for my son's wedding. She then had her office contact my insurance and I was approved for WinRho - had one IV of it and went back into "remission". It was put in my record that I refused prednisone.

What I'm saying is IF your count goes down again [heaven forbid!] talk to your doctor. You want to do what is best for you.

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jeffrey71
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12 years 10 months ago #31810 by jeffrey71

Replied by jeffrey71 on topic steroid tapering experience, advice please

Good for you Dru! Whats new on your side of the conutry?

Jeffrey

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dru
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I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.

12 years 10 months ago #31814 by dru

Replied by dru on topic steroid tapering experience, advice please

Hi Jeffrey,

The best thing going on here right now is finally, no more snow! Nice Easter weekend and all of it melted.

Boston marathon in a couple weeks too.

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dru
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I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.

12 years 10 months ago #31844 by dru

Replied by dru on topic steroid tapering experience, advice please

I just got some steroid tapering advice from my neurologist I see for migraines. I told him I have a terrible time right after I go off prednisone. I have joint and muscle pain that never goes away. He said I probably have steroid pseudo rheumatism and that I should go off much slower, that the worst part of the taper can be from 2.5 mg to 0 for people like me (nothing to do with platelets but with muscle pain). He wanted me to take 6 wks going down from the 2.5mg I am on now. I saw the hema today and she said okay but she wants me to do it a little faster and go down by .5 every 4 days. So am going to try that and hoping it will be a little better for me.

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eklein
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12 years 10 months ago #31846 by eklein

Replied by eklein on topic steroid tapering experience, advice please

A new search term thanks dru! steroid pseudorheumatism there are a number of articles going back to at least 1957, I wonder why none of our doctors (that I know of) ever mentioned this before.
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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dru
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I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.

12 years 10 months ago #31849 by dru

Replied by dru on topic steroid tapering experience, advice please

Yes, I found that 1957 article too. This neurologist told me that most doctors dont consider the affects of steroids at low doses. The hematologists are just looking at platelets. Other doctors are just looking at whatever they are treating; allergies, asthma, skin problems. When I first completed a steroid taper in 1999, I went back to the hematologist because I felt so awful, tired, joint and muscle pain. She really had no answer for me. This happens to me everytime I go off prednisone, so maybe this neurologist was just trying to give me a name for it and a possible solution to the problem. I will see how it goes over the next few weeks. I feel great now at 2.5mg prednisone and my platelets are fine.

The following user(s) said Thank You: CindyAnn

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CindyAnn
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Diagnosed Jan 10, 2008. Rituxan treatment in May 2009. Treated with Prednisone off and on until 08/23/17 - 12.5mg Promacta as of 10/22/17

12 years 10 months ago #31851 by CindyAnn

Replied by CindyAnn on topic steroid tapering experience, advice please

So the joint and muscle pain is not all in my head :huh:
Been off prednisone for 5 weeks this time and let me tell you - I hurt (this is my third taper in 11 months and this time the pain is not going away

)

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dru
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I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.

12 years 10 months ago #31852 by dru

Replied by dru on topic steroid tapering experience, advice please

No definitely not in your head, that is just what happens to me. I hope it will be better this time with a very slow taper.

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jeffrey71
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12 years 9 months ago #31879 by jeffrey71

Replied by jeffrey71 on topic steroid tapering experience, advice please

Good Morning!

I just came off my prednisone about 2 weeks ago. I came off the last 20mg daily in 2 weeks. I thought that was fast. I have been having the muscle and joint pain too. It seems to be getting better slowly. I mentioned it to my doc this week and he just nodded! I would just nod too if I didn't hurt! LOL. anyway this conversation sheds a little light on what I suspected. Thanks everyone!

Jeffrey

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Lori
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12 years 9 months ago #31902 by Lori

Replied by Lori on topic steroid tapering experience, advice please

OMG! I thought the stiffness and knee aches were something else but sure makes sense it was getting off the prednisone. Never had the aches before this ITP/prednisone treatment.

I was at the point of saying 'that I'm just getting flippin' old now' with these new aches and pains.

Sure makes sense it could just be from getting off the prednisone. Each day is a little better (both mentally and phyisically) so will continue to push through it. Especially since summer will get here to New England sometime and I so want to be outside in warmer temperatures and sunshine!

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jeffrey71
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12 years 9 months ago #31914 by jeffrey71

Replied by jeffrey71 on topic steroid tapering experience, advice please

Great Attitude Lori!

Jeffrey

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dru
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I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.

12 years 9 months ago #31934 by dru

Replied by dru on topic steroid tapering experience, advice please

Hi Lori,
I'm in New England too and also hoping for some nice weather to get out in. Sunny today but cold. I'm going down real slow on Prednisone, have never done this before. My doc usually had me go 10mg to 5mg the next week and then off. I am hoping this slower taper will help with the fatigue and pain I always get after prednisone. I'm doing okay now on 1.5mg a day.
I dont know how my counts are. I am having bad parethesias and I never get them except when my counts are dropping. The numbness and tingling is making me feel a bit crazy.

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Lori
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12 years 9 months ago #31950 by Lori

Replied by Lori on topic steroid tapering experience, advice please

Well, I was happy with my counts today but hematologist wasn't thrilled as since off prednisone was at 153 on 3/22 and today down to 129...not that it isn't a good count but recheck on 4/19 as feels it will be like last time which went from 107 down to 53 in just a couple weeks. Poop!

Anyway, he agrees to leave me off prednisone until the 19th and if still dropping will 'discuss' other options as since twice on this drug is just keeping the counts up when I'm on it. Getting the feeling he doesn't think a real remission is going to set in.

So I have a little more time of feeling 'normal' and I'll take whatever I can get at this point as been really since May of last year between low counts and then prednisone.

dru, I'm sure you are sick of this cold also. Love the sunshine today

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steroid tapering experience, advice please

You’re not alone. We have answers! Contact PDSA to connect with life altering information, resources and referrals. 440.746.9003 (877.528.3538 toll-free) or PDSA@PDSA.org.