steroid tapering experience, advice please

Hello! I would like to know what is your experience of tapering steroid. How long did it take from 10mg to 0 mg and what was the plan for the tapering. I know that we should be very careful and slow when the dose comes down below 10mg.

I was diagnosed with ITP in Oct 2012 with platelet count 3 and was put on 80mg of Prednisone daily. Then the dose of Prednisone was tapered down and my count was up to around 70. My previous tapering experience was: from 40mg to 10mg cutting 5mg every 4 days; then 10mg for 5 days,5mg for 5 days,and 2mg for 5 days. Then my count crashed in late December with 2mg.

I took Prednisone 40mg daily again after the crash. My count went up to 280. Now I am coming down to 5mg. I thought it might be that last time the tapering was too quick for me, and I need to taper slowly. But I don't know how slowly it should take. My doctor seems has little experience with this.

I read a lot from this forum and have got more info about the tapering. But I cannot find more specific info about the process of tapering. I just wonder if anyone here would have any insight or stories you could tell to help me figure out how to do the right thing.

I know it may be that steroids just has temporary effect on me, no matter how slow the tapering process is, my count would crash eventually. As my count was fine with 5mg, I feel that I may have remission if the tapering goes properly.

Any experience and comments would be greatly appreciated. Florence

Hi Florence,

My previous tapering last October went from 10 mg's daily to 10 mgs every other day then off.

Same experience as your first tapering as after a month, I was put back on 40 mgs. Since such severe side effects on the high dosage and the counts were improving, hematologist decided this time to get me down to 10mgs and keep me there for a much longer period of time before even doing the every other day of 10mgs (been at 10mgs since Jan 3rd).

I'm keeping with that plan as don't want to rush getting off, if all it will end up doing is getting me back on at a high dose again since the prednisone seems to boost the counts enough without going into some other treatment.

Will be checking on Thurs on if counts still okay with the 10mgs after a month on it...if so, he may reduce me to the 10 mgs every other day.

Take care, Lori

Florence:

There is no real rule for tapering. It depends with each individual. The faster the taper, the more severe the withdrawal can be, but some people like to get it over with quick. Sometimes withdrawal is nasty no matter how slow you taper, but most get through it okay. You haven't been on Prednisone that long, so you wouldn't have to do a really long taper, but I'd try to keep at least a week between each drop in dose.

Thank you Lori for sharing your experience.

My current tapering plan after discussing with my doctor is: since 5mg daily, drop 1mg every 5 days until 1mg daily, then might do 1mg every other day. I don't know if it would be dangerous if dropping from 10mg daily to every other day directly. I was on 7.5mg daily for 5 days before reaching 5mg daily.

In my case, my count was fine with 5mg daily. therefore my doctor felt that we need to be slow when the dose below 5mg and only cut 1mg every 5 days or every week. I don't know if it would work for me or not. That's why I posted this thread for more info.

There are a couple of factors to consider with the tapering.
1) your platelet counts and
2) symptoms of prednisone withdrawal.

You might have problems with one of these, both or neither.
Erica

Thanks, Sandi. I have read a lot of your replies in this forum, and learned from that.

I am now down to 5mg daily again and the new plan is cutting 1mg every 5-7 days until 1mg daily. My count dropped from 280 to 150 when the dose reduced from 40mg to 10mg.

When you said "at least a week between each drop in dose", what is each drop you suggest: droping 1mg or 2.5mg or something else every week?

Another question: do you think 10mg every other day is better than 5mg daily? My doctor said they are same. But from what I read from this forum, I have an impression that every other day might be better (if I am not wrong). What do you think?

Thanks, Erica. I haven't got the symptoms of prednisone withdrawal so far. My count was from 280 to 150 in the second round of high dose steroid tapering. But it was still in normal range until last week. I am worried that whether the tapering is too fast/slow for my count.

When you said "at least a week between each drop in dose", what is each drop you suggest: droping 1mg or 2.5mg or something else every week?



It would depend on the dose and how counts were doing. The lower you go, the slower the taper should be. This is by no means any sort of rule, but when I got to 5 mg's, I tapered by 1 mg. every week until zero. I'm not a fan of stopping at 5 mg's, but most doctors tend to do it that way. I had to tell my hemo that they made 1 mg. pills.

Some people swear that alternate day dosing is easier, but I tried it and could not do it that way. I had withdrawal on the off days. It's really a personal preference.

My wife's Dr has her going down 5mg/week she's on 10 mg now not sure whats going to happen after 5mg she will find out tomorrow.

Hi Florence,

Asked at my hematologist appt about the taper down process as he has been in this business for 26 years and currently treating 3 ITP patients (of course we are all different). With that in mind, I'm on 10mgs now having tapered down from 40mgs on my 2nd try at prednisone...counts today were the same as earlier this month of 141 (even having a cold which I thought might reduce them).

To taper down to 5mgs, he uses the 10mgs every other day process and then if counts okay at end of February I'm off it again to see how things go. Why he goes this route...he states that it puts the adrenal gland on notice that it needs to start producing steroids again since the prednisone shuts it down totally. So with 10 one day and then 0 the next, he has success in jump starting the body to produce versus just giving the body a little taste and expecting that it knows to produce the rest.

As far as anything less than the 5mgs, in his opinion it is more to 'pay the doctor'. That was interesting...states that adrenal gland when function properly produces 7.5-8mgs on its own so confusting it more than anything with lower dosage. Also made the analogy of handing me a dollar and stating go out and get a good meal with it as that is how the adrenal gland feels like it is just a tease. I definately know his thoughts at this point and I don't have issues with tapering down that way, I just can't tolerate more than the 10mgs a day and don't want to go off too soon to find out I need to get back on at a high dose again.

Just wanted to pass the info along...hope your counts stay up.

Lori

Hi Lori,

Thanks for the detailed info. Your haematologist said something interesting. I thought that every other day is better than daily when tapering at low dose after reading something from this forum. But my doctor said that there is no evidence or study showing that. I might try it at lower dose.

I also speculate that if I am fine with 5mg daily, would that indicate that I would be fine after off steroid pills completely, as adrenal gland when function properly produces 7.5-8mgs on its own. That means human body itself can produce enough to keep my count in a safe range.

jaysbeaker, thanks for your reply. Have you got any info about the tapering after 5mg from your wife's doctor?

My next phase after the every other day and if counts staying steady will be totally off. But even after a couple weeks of the on/off at 10 and then checking the counts, I get the feeling that he will still keep me on for another week or so before he has me stop totally and will retest 2-3 weeks after that to see if counts are still stable.

Past dosage was 40 mgs for one week, 30 mgs for one week, 20 mgs for 2 weeks, now I've been on the 10 mgs for a month+ and I'm almost nervous to get off as don't need another crash to start this all over. First time I couldn't wait to get off but after starting over at 40mgs, I'm way more cautious and just want the end result to be whatever my normal count is for a while.

Good luck and please do post how your counts are after getting off again.

Lori

Hi Lori, some update since more than a week ago. the dose reduced to 4mg/day two weeks ago, got a blood test done a week ago with count as 44, from 151 when I was on 7.5mg. my doctor let me stay on 4mg/day for one more week (the original plan was cutting 1 mg per week) to see what would happened and thought that I may need to use other drugs, as steroids seemed to be temporarily effective on me.

I got a blood test done yesterday and the count went up to 131, which was a surprise to me. now the dose will taper to 3mg/day for at least a week. will update the count next week.

Good luck!

Thanks for your update Florence. I just went down to the 10mg every other day starting on the 12th, so won't get counts until the 27th, Then see what the docs plans will be at that point. I hope your levels stay up there.
Lori

So far so good on the 10mg every other day since the 12th. Count increased from the 141 to 156...hematologist plan is to keep me on the 10mg every other day until the 16th of March, then off for a week to get it cleared from system and then recheck on March 22nd. Fingers crossed!

This second round of prednisone had an additional B-12 shot every month (since I was somewhat B-12 deficient to begin with). Hematologist agreed that pred and/or my body was working better with the B-12 shot each month and that it definitely has shown to be a boost with stabilizing the counts at the higher range. I will continue to be optomistic that after stopping prednisone that the B-12 monthly may keep things at the normal range.

Wishing everyone success with their treatments!

Thanks Lori for the update. In the last two weeks, I have been being on 3mg/day, and the count was 54 last week and 32 this week. My doctor let me stay on 3mg for one more week to see what would happen. if my count is still dropping, he would change treatment for me. Let's wait and see.

Best wishes.

Oh, sorry to hear that counts dropping on the 3mgs. All I know is that on the lower levels, I can tolerate prednisone much better so since that works for me if counts do go down after stopping, hematologist will only put me back on at 10mg's top again. Not that I like the thought of taking that drug any longer than I have to but it has seemed to overall work for the time being. Sending good wishes your way that next week the counts will be back up there for you.

My steroid treatment was a 4 day Decadron pulse (high dose). Now I won't say it was pleasant, before or after, but so far I've had terrific response and it was over in 4 days vs weeks and weeks. My hematologist says he has seen really good results in his ITP patients...anyone else had any experience with that? Perhaps that would be an option if your counts are dropping again.

Thanks DTMEDIC. I know there is a 4 day high dose treatment, but don't know why my doctor didn't use it.

Hi Lori, some update. my count this week went to 82, therefore my doctor let me taper from 3mg to 2.5mg per day for a week. it seems that my body responses very slowly.

Super news Florence that the count went up again on the lower dose.

I think my response is slow also and that is why hematologist keeps me at the higher rate for longer periods of time, then the every other day and then just stops.

I still worry about getting off and seeing them drop again but at least with reading through the forum there are other alternatives (thsnks DTMEDIC) to at least mention to him (and this time I'll ask way more about side effects with anything new).

Keeping optomistic does more for me than the drugs and looking forward to decent counts on March 22nd.

It seems like more doctors favor using pred over the decadron, I don't know why.

My doctor has tried different dosages and different taper rates of pred over the years with me. It does not seem to make any difference for me. My counts go way up on high dose and when I get to 10mg they fall fast

I'm on 15mg now and feeling jumpy and irritable. Also having a lot of numbness and tingling which I always get when my counts drop.

Dru

Hey dru, what does the decadron treatment do for you as far as side effects and/or counts?

Even at 15mg of prednisone, I'm pretty much way to irritated to deal with anything and amounts over that brings in major depression and totally fuzzy brain (actually drove into the back of someones car in a parking lot last November and it didn't even phase me - sad). So most I will allow after the two high doses of prednisone and tapering will be 10mgs tops. Counts are one thing but being able to function is a whole other issue for me on the prednisone.

Just wondering how decadron worked for you and since you seem to have similar prednisone side effects, what were the decadron effects and how long did your counts stay up.

Hi Lori,

No I was not on decadron, only prednisone starting with 60mg this time. I think it was DTMEDIC who was on decadron.

I can relate to the prednisone problems, I'm a mess now on 15mg. I'm usually okay when on 10 mg as far as side effects but it doesn't hold my counts up. The biggest problem for me is when I go off all the way. I get muscle pain and fatigue that never goes away.

Dru

Hi everyone,

This is my first post. I was diagnosed with ITP in September following a viral infection.

I have been on prednisolone since the initial emergency treatment when I was admitted with platelets at 11 (IVIG). I started at 80mg and gradually tapered down to 5mg. My count wavered between 100-150 on 5mg and I was kept there for around 2 months. I am keen to get off steroids and during my last docs visit I pushed to taper off completely. Doc was worried because my counts showed some variation.

So I've been on 5mg every other day for 3 weeks. I've had a couple of withdrawal symptoms (dizzy, lethargic, low mood) but they come and go. I have a CBC next Weds.

I guess I'm still coming to terms with this being a life-long condition. The doc doesn't seem to think that 6 months is 'that long' to be on steroid therapy. I hated the high dose side effects (most of these started to subside at 5mg). Now I'm wondering if I'm being too impatient. I wonder if 5mg was a good compromise after all.

Well, no point speculating until next week.

Carmo:

ITP can be chronic, but that doesn't mean it's lifelong. Most people do get remissions here and there. I struggled for 8 years with up and down counts, on and off of Prednisone, but ended up with a 7 year remission after using Rituxan.

Six months is a long time to be on Prednisone, but 5 mg's is a very low dose. The body makes 7.5 mg's of cortisol daily, so you are taking less than your body produces naturally.

Counts will fluctuate, that's normal. It's only a downward trend that you need to monitor. Hang in there. It will get better.

Lori wrote: Hey dru, what does the decadron treatment do for you as far as side effects and/or counts?

Even at 15mg of prednisone, I'm pretty much way to irritated to deal with anything and amounts over that brings in major depression and totally fuzzy brain (actually drove into the back of someones car in a parking lot last November and it didn't even phase me - sad). So most I will allow after the two high doses of prednisone and tapering will be 10mgs tops. Counts are one thing but being able to function is a whole other issue for me on the prednisone.

Just wondering how decadron worked for you and since you seem to have similar prednisone side effects, what were the decadron effects and how long did your counts stay up.

Lori...the side effects of Decadron for ME were pretty much the same as previous experiences with Prednisone for other problems...just a bit more. I felt anxious and jittery; had a dull headache much of the time, etc. BUT I was also getting IVIg treatments which cause all the same stuff. I pretty much felt like crap for a week and then got the flu which knocked me down for a couple of weeks. So, all in all...I don't think the Decadron was so bad. I would do it again...if that helps.

As with everything in the land of ITP; Decadron/Dexamethasone doesn't work the same for everyone.
For me, it ONLY works as a 'rescue' treatment. A 4-day course will usually bump me into the 30k-50k range. But that only lasts for a few days (2-5 max), then I'm back in the <5k zone again.
Side effects vary for different people also. For me, being on Dex is like a full-time nasty withdrawal. For some real fun, try playing/singing in a biker bar on the 4th day of a full Dex pulse. Whoo-hoo!
I have 'lived on' Dex for a few months at a time (due to insurance reasons)....doing full or half-doses every couple of weeks. Using Dex/Dec for any length of time is not something I'd recommend to anyone. Been there, done that, and didn't even get a t-shirt.
It is a great rescue drug, but not a miracle cure for many of us.
.

Thanks everyone for contributing to this thread. According to my understanding with my past experience, we need to be very careful when the tapering is below 10mg to avoid crash (though the count always crashes for some people). The tapering speed for each individual should base on the count monitored closely (weekly if possible). Some may need very slow tapering like me, some may not.

On the safe side, my feeling is that it might be safer if tapering slowly instead of off completely from 5mg. The decision on when and whether or not to taper depend on the counts during the process.

Sandi, thanks for the words of support.

I have read about the levels of cortisone produced by the body but I am still concerned about long term pred use. I don't know if low doses are friend or foe right now. I am slowly recovering from terrible acne related to the high dose pred. I have dropped the 10lbs I gained initially so perhaps 5mg has limited/manageable side effects (from what I can see on the outside). But I worry about what's happening inside (osteoporosis, for example).

These past few days I've been feeling exhausted and distracted. I think it is related to the tapering but I am on week 3 of the every other day and it has only just started. No bleeding signs so far