How long do they take to wean you off prednisone?

I am wondering what the general schedule is for weaning a patient of prednisone. Is there a formula they follow? Is it dependent on platelet counts? Every other week? Can anyone help with this question?

There aren't any real rules about tapering. It all depends on how the patients counts are responding (or not responding).

Ideally, it should not be tapered until the persons counts reach a plateau and stay there for a few weeks, then should be tapered slowly, at least by 5 mg's a week or 10 mg's every other week. When it gets down to 15 mg's, the taper should slow down to give the adrenal glands a chance to start functioning normally again.

Some people cannot tolerate the side effects and need to go faster to just get off of it. Some people cannot stand the withdrawal and choose to go slower. You are not only dealing with how counts respond, but also how your body is tolerating the taper. It can be difficult the lower in dose you get.

Everyone has a different experience or preference, and some doctors do not understand how harsh the side effects can be and how they affect a person's life, ie...job performance.

So far the prednisone has not bothered me too much. My equilibrium is not good some parts of the day, and my hands feel funny. I have only been sleeping 4-5 hrs a night but it is because my mind is so cranked, I think. I get tired, fall asleep, turn the light off, and all of a sudden my mind is tripping through my fears. I also nap most days. This is a large thing to grasp. So far my counts went terribly slowly. It took me two weeks to get to 25 after IVIG, Steroids, and Winrho twice. Then all of a sudden, they started to zoom up so that on the 24th I left the hospital with 25; two days later the count was 90; three days later, 230; and a week later-- today-- 342. I don't know what to make of this. I am afraid it will crash. A week ago they lowered me to 30mg a day. They haven't said anything about lowering it further. My normal platelets during routine diagnostic tests in 2010 was 368. I wish they would find mine from last year. I know it was normal, but I would like to know what it was last spring for some reason.

Platelets fluctuate a lot in people with and without ITP. In a person that doesn't have ITP, you might see a count of 253 one month and 305 the next month. I really wouldn't worry about trying to keep your counts where they were on prior tests. As long as it's over 150 it's considered 'normal'. As long as it's over 30 it's considered 'safe'. When some people with ITP realize that they can't maintain normal, they lower their standard to trying to maintain safe. It can be a hard thing to accept, but the sooner you do, the easier this gets.

I'm not saying that you can't achieve a remission. Many people do and are quite surprised when that happens, especially when they have struggled for a while. IVIG is almost always a very temporary fix that lasts a week or two if you're lucky, so don't expect much from that. Platelet transfusions are useless unless there is bleeding. I've seen people get weeks or months from Win-Rho, but I have no idea if you responded to that at all since you had other treatments at the same time.

All I can tell you is to try to relax. I know it's hard. ITP invades a perfectly good life and no one likes it. You feel like the carpet has been pulled out from underneath you. But the good thing is that for most people, it's manageable, it's not debilitating, and you can lead a normal life with it. I know it doesn't seem that way at first, but you will find that out in time.

Yes,try to relax..your counts are great and you are not having too much trouble with the prednisone. I have had ITP since 2005. I am a worrying kind of person and I have kept track of my platelet counts since then. But what I found out was that the counts were all over the place there really isn't any rhyme or reason. I have had prednisone, IVIG, and rituxan. There really is not any standard or general schedule for tapering prednisone. It depends on your counts and response to it, a slow taper helps reduce side effects.

Always before my counts fell quickly on a taper. But this time I have gone back into remission from prednisone. I have been off for 1 month.

I think part of my problem is that I have only had maybe 15 minutes face time with my actual doctor in the past month and am not scheduled to see him again for 3 weeks. I have seen more of his physician's asst than him, and she's not a doctor. I haven't been given any real information from them. When I talk about equilibrium problems, they are shrugged off. I have no real sense of how I am doing compared with other patients. That is, is how I am reacting to things "normal." Is my experience so far what is expected? I have an appt with a specialist tomorrow. Perhaps he will be better in terms of communication. I ended up in the hospital yesterday with severe back and chest pain. I thought I was having a heart attack. It was diagnosed as anxiety related after a cat scan and numerous blood tests. I need to get a grip.

RH:

Prednisone can cause anxiety since it makes you so wired. It just adds to the problem. It can also raise blood sugar which can make you shaky.

There isn't a normal when it comes to dealing with ITP, so to get some sort of answer on that is difficult. All patients respond differently. What do you mean about equilibrium problems?

You're doing well. You're counts are good. This is the time when you need to relax and enjoy that. Worrying about a drop is normal, but worrying isn't going to change the outcome of this. It just causes additional stress that you don't need right now.

I didn't see my doctor a lot either, but that was fine with me. All I needed to know was the count, and treatment decisions would be discussed on the phone if need be. There isn't much he can tell you. When it comes to autoimmune problems, all you can do is try certain things and hope they work. No one can predict if it will work or for how long.

What questions do you have? Maybe we can help. I hope the specialist can give you what you are hoping for.

By equilibrium problems I mean that at least part of the day I feel like I am on a moving ship. I told my doctor about this and she just shrugged it off. No even trying to say what it could be. I have read steroids can cause dizziness. My doctor's office called this morning and told me to drop down to 20 mg of steroids today, but I'd already taken 30. Guess I will go to 20 tomorrow. I am glad I am dropping to less steroids but nervous as well, as I have read most people tank at 10, and to start all this over again....

I guess I just feel at sea, wondering where this is going. Wondering if it could be a one time thing like my neighbor who had it at 28 or if I am going to be in and out of hospitals for the rest of my life. Wondering if it will be dangerous to travel overseas. We have a trip planned to the christmas markets in Germany in December. What if I have an attack then?

It feels useless to even ask questions because it is unlikely that any one can tell me what I am going to experience with this disease. I am afraid to be happy about the cout of 342,000 because I am aware it could tank at any moment. I don't know if it means anything significant that it is 342,000 now.

Thanks for the encouragement and responses. I appreciate you taking the time to write.

RH:

I think the hardest part about all of this is that you feel like you have no control over your own life. I know that was the issue with me. Once I got the hang of things though, I became a part of the treatment decisions with my doctor and I felt as if I had control then.

People are not always hospitalized with low counts. Many of us were still working with counts under 5. Of course, that depends on your job and its physical demands. Sometimes doctors will hospitalize at first, but as time goes on, they tend to relax a bit, especially when they know what you will respond to and how your body deals wit low counts. I've never been in the hospital for ITP and hit lows in single digits many times. A lot depends on symptoms.

I know you feel like your life is up in the air, but probably by December you will have a better handle on things. When most people have a trip planned, they usually will treat before hand if counts are headed down. You still have a lot of things to try (like Rituxan), that can bring remission.

I know this is little consolation, but you do respond to treatments so you are doing ok. Some people don't respond to anything at all. Based on that, you can most likely plan things ahead of time to be sure that your counts are okay for your trips. You need to talk to Jeffrey; he's newly diagnosed and is still taking cruises and running marathons. His counts are around 50. Maybe he can shed some light on how he is juggling things. It takes time to adjust to this, so give yourself time and try to stay calm.

Prednisone can cause dizziness, but so can low potassium or magnesium. Prednisone can lower those levels, so maybe ask for a metabolic panel with your next CBC and make sure your electrolytes are ok.

Yes, that is it exactly. I feel as if I am swinging in the wind with no control over my life. to have such a major thing come out of the blue is disconcerting. I am 66 and I think that may work against me. I don't know. When I was in the hospital for two weeks, waiting to crest 20, everyone kept telling me how healthy I was, yet I had no platelets!! Then the winrho knocked me into a rather severe anemia.

I am glad of this place to "talk," as there is nothing so boring to others as your health problems. I don't want to be one of those old ladies who does nothing but talk about her illness. I hate that my husband is so anxious and my children and my two oldest grandsons. They are 7 and 9 and were quite upset about me being in the hospital for two weeks. it scared them even tho I made light of it.

I don't understand why it took me so long to respond and then my platelets just zoomed up.
They kept telling me I was a hard case, the worst they'd seen. That was not reassuring. I don't know if the zoom is a good thing or it means nothing. This doctor will put me on promacta if my counts drop, and I'm not sure I want to go there. It is such a new drug and has a potential of some serious side effects. And it is $6,000 a month.

How do I talk to Jeffrey?

Okay. Keep talking. That will help! I also came here for emotional help when I was first diagnosed. It saved my family because I did everything I could to just keep things normal for them, plus, the people here understood it better.

What I am going to say will spin your perspective, but could be helpful. I was diagnosed with ITP at the age of 35. I had 3 young children and a full time job. Getting through years of treatments and low counts while juggling life was hard. So I thought. Then when I was 45, I was diagnosed with Lupus. I thought it was the end of the world. It can be debilitating. I felt sorry for myself and had nightmares all the time. But then I took a good hard look and realized....it could have been worse. I became grateful that I was diagnosed at 45 and not 25. My kids were grown and I had gotten through the toughest and best part of my life without it. It sucks, but at least it waited. I don't know if you've ever had health issues before, but now that you do, at least it waited. To get to the age of 66 with no major issues is a good thing. I'm only telling you this so you can possibly see a positive side. Sometimes you have to look hard. In time, you will find that ITP isn't all so bad. Just something to juggle, something to manage. The bleeding risk gets worse as we age, but 66 is still pretty young. 80's or 90's would be worse.

Believe it or not, people with ITP are still healthy, they just have less platelets sometimes. I didn't consider myself sick, even though I felt horrible with all of the treatments. If you think healthy, you'll feel better. If you think of yourself as sick, you'll feel that way...fragile and frail.

You are not the worst case I've ever seen, not by a long shot. I've been on this Forum nearly every single day for 15 years (since the PDSA began). I've seen people stay at zero for months and due to a high bleeding risk, they were in the hospital the entire time. Yes, your platelets were stubborn. I can't really tell you what finally got you up because you had numerous things going on at once. It could be that if they had tried a particular thing in the first place, you could have responded sooner. Hard to say.

As for Promacta, it is a new treatment. But many people do well with no side effects. The main concern is bone marrow fibrosis, but that is rare and reversible if the drug is stopped. There are children using the TPO's (Promacta and N-Plate). The cost is horrendous, but sometimes the drug companies help with the expense if insurance does not cover it. Don't throw it out just yet.

This can be an emotional roller coaster. It is for everyone at first. But I can't tell you how many people here were as scared as you are at first, but come back now to help the new ones, confident and no longer afraid.

If you haven't read this, now would be a good time:

pdsa.org/forum-sp-534/5-newly-diagnosed-a-frequently-asked-questions/8344-excellent-advice.html

I'll try to hook you up with Jeffrey.

You really have made me feel calmer and more positive. I guess I needed to hear something positive from someone who has been through this. I am grateful to you. I really don't need to get myself so upset that things are worse for me than they have to be and worse for my family. You are correct. There are many millions facing worse.

hope my taper goes well and I don't tank.

Went to the specialist in Indy this morning. He spent 50 minutes with me. I have never had a doctor take such time to explain things. He gave me a schedule for steroid taper that runs to mid-august. Very slow! I feel in good hands. though the facts remain the same, I feel more positive.

Great news! I'm glad he took time to talk to you and that you are more positive. Did he shed any light on why it took you a while to respond?

He says based on the amount of bleeding I had and the abruptness of my entire body being covered with the pinprick hemorrhages that he thinks my platelets simply crashed preciptiously. He said that when that happens, the stem cells don't know what to do, that they don't know what kind of cells to reproduce. He said it takes a while for the system to reboot and know it needs to start producing platelets again. And now that they have, they are going like firecrackers. About 1,000 an hour for the past two weeks. He doesn't know how I will react to the steroid taper, but he takes it out over several months. So I will be at 20 the next two weeks, then alternate between 20 and 10 the next two weeks, then 10 two weeks, etc. until I am alternating 5 and 0 somewhere in mid-August. Of course, he says my count could drop at any point. So even liking him and feeling more positive really makes no difference in the face of things. No way to predict what will happen. He favors splenectomies over rituxin and promacta. He says his opinion on that has evolved over the years because he too often has to do a splenectomy after rituxin. So I don't know where this is going, and I have to say that as the afternoon wore on, I began feeling down again about it all.

RH:

Keep in mind that tapering Prednisone can cause depression, so some of what you are feeling could be related to that. Having to grasp a new medical problem and getting thrown onto Prednisone is a tough thing to handle. I think things sound pretty promising right now and you have a doctor who isn't rushing you through the steroids. A slower taper just might hold the counts.

This is a video of a recent conference by one of the top ITP specialists. It might be helpful:

fhs.mcmaster.ca/medicine/hematology/ITP-2010/player.html

And that guy totally disagrees with my doctor who hates promacta and thinks splenectomy is better than rituxin. It is so hard to know what to think and what to do. And I am not fond of waiting to know what the platelet count is every Wednesday for months. It really is a depressing prospect with or without steroids.

Splenectomy is becoming an old fashioned treatment...almost obsolete. I know it's confusing. People do get over the weekly count panic in time. I always played a trick on myself and just told myself that the count is exactly the same as it was the week before unless they told me differently. Doing that made me not feel stressed by it. Everyone lives by the numbers at first, but it really boils down to symptoms and how you feel that is important. Some people prefer not to do weekly counts because it gets too stressful for them. If counts seem stable, you can go to every other week. When counts are even more stable, you can go to once a month. There are people who live with counts in the 20's and only get counts twice a year.

I think I've seen the opposite - more people doing Rituxan or N-Plate after splenectomy. What they don't tell you is that many of these things raise the risk of blood clots. For various reasons, having ITP can cause a person to be prone to blood clots. Splenectomy also raises that risk. You add TPO's in after that, and the risk is even higher. There are articles to support that. Same with being immunosuppressed. You have the splenectomy and that makes a person susceptible to serious infection. If counts drop, you add in steroids or Rituxan and that causes more immunosuppression. Splenectomies fail often, even weeks or months after the surgery. It's a treatment, not a cure. It's by far not a sure thing, and studies have shown that it is more successful in those under 40. I'm not telling you this to confuse you. I'm telling you this because I would want to know, and would not want to go through all of that and wonder why no one ever told me if a problem came up. It's better to be an informed patient than one who follows blindly.

I don't know if anything I'm telling you is helpful or not. Honestly, most people find ITP just an inconvenience. It takes time to reach that point. You will too, and there is a good chance that your counts could stay up for a while. It's going to be okay. Just wondering, have you had a bone marrow biopsy?

RH,

I was wondering about a bone marrow biopsy as well because you were talking about your body possibly not producing platelets normally. Have you tried IVIG? I had a similar experience with a hematologist and ended up going to a specialist at Cleveland clinic. He said that the best way to know if someone has ITP is if they initially respond to IVIG. I responded to IVIG initially so this means I produce platelets normally and my immune system attacks them. A bone marrow biopsy could also tell you this.

I felt the same way after going to the specialist. The information was similar, but he was much more willing to try other treatments rather than just rush me to the surgeon for splenectomy.


I'm glad that you are feeling better emotionally. Prednisone is not a fun drug to be weaned off of.

Unfortunately a bone marrow biopsy doesn't show that platelet production is good. The first post here explains why.

pdsa.org/forum-sp-534/6-general-itp-discussion/11698-bone-marrow-biopsy-and-production-answers.html

Most, if not all, ITP patients have a production problem as well as a destruction problem. That is generally accepted now.

RHofm50129,

Hi there again! I hope you got to read my message to you on the other link. Sandi has given you some great information and has pointed you in the right direction. How cool is a trip to Germany??? Don't worry about the ITP, just go! I am leaving on a cruise Monday. I ran the Indianapolis 500 Marathon last Saturday. You can see how much this is bothering me! My guess is you feel fine! Go forth and enjoy!

Those of us with ITP just have to adapt to a few things. So far my adjustments have been minor and my platelets have been as low as 20 that I know of. My doc thinks that I have had ITP for a couple of years. During this time, I got my eldest daughter married off, ran about 28 races, done 12 triathlons, and drove my wife and most of my friends nuts! Just a normal life. They found my ITP on a routine physical and it scared the crap out of me, at first. This site got me to see what it was, and helped to educate me to ITP and related issues. I am in control of my life, not ITP or my doctors (who are great). I too see the physicians assistant some times, but I really prefer that! She is a LOT better looking than he is!

Platelet counts are just that and they vary. Stay healthy, eat right, exercise, and take care of yourself in all ways. Talk about ITP with your close ones if you think that will help, it did me. I talked about it so much I told myself to shut-up, but I didn't. You sound active and involved. Never let anything take that away from you! Now just go and enjoy the evening! I will check back with you tomorrow as we travel to the cruise ship! Go and treat yourself to chocolate cake! Think of poor me that gained weight on prednisone and is trying to get it off. Please send a picture of the cake! I love a good cake!

Jeffrey

I had a bone marrow aspiration on day five, and it said I have normal bone marrow function. They even did a chromosome test and my chromosomes in the marrow are normal. I had IVIG and steroids immediately and winrho about day five and again on like day 8. I had under 4 for days and then 5 for days. then on day 12, 12,000; day 13, 14,000; day 14, 25,000; day 16, 90,000. Then five days later 230,000; then a week later after dropping to 30 mg from 40, I had 342,000. So I don't know where this will go. I am now taking 20 mg. I have another blood draw on Wed. Hopefully, it will up up or stable. I don't know if I should be hopeful about the higher counts or if they mean nothing.

My doctor says his opinion of splenectomies has evolved over the years. He says he used to put it last; now promacta is his last. He said he used to do rituxin before splenectomies but that most of the time he has to do the splenectomy anyway. I guess I will make that decision if and when I must make it. I can only take this a week at a time. There is no way to make a decision about having my spleen removed until I see if I need it removed.

If I can produce a 1,000 a day, I don't think I have a problem with platelet production. My doctor hasn't said that anyway.

Hi, where are you going on your cruise and what line? We've taken about 26 cruises. Love it. Favorite line is Princess.

I mean 1,000 an hour. Sorry.

RH:

The fact that your counts are that high is a very good sign. I'm not saying they won't drop ever again, but you seem to be doing better than many others I have seen during the taper. That is a good thing!

I know you are getting conflicting information that is confusing. The information that the PDSA provides is the most current data from the top ITP Specialists in the world. A lot of doctors truly do not know the most current information. I know my Hemo doesn't and he has admitted that. For example, most doctors are still under the impression that the bone marrow biopsy can determine if production is normal. That is far from the truth, as Ann said. If they say that, then they are not on top of the disorder. That information became available a few years ago and has not spread very quickly at all. Every single person who comes here after the biopsy will say that they were told production is normal. Most people with ITP do have a production problem as well as destruction. That was determined in numerous studies but that test is not available for regular use.

You're right, you do not have to make a decision right now. Time is on your side. There is never a need for an emergency ITP splenectomy and it is wise to carefully think that through before making that decision. I don't know if you saw this, but I found this article today and it is a very good one regarding pros and cons of treatments. It may help you with the decision.

bloodjournal.hematologylibrary.org/content/120/5/960.full?sid=9e00c230-10f8-405a-964d-299484e271a0

If you have any questions about anything, just ask and we can provide you with articles. There is so much information out there and Bloodjournal.org is the best source.

I've always wanted to go to Germany. My daughter has been there - she befriended an exchange student from Germany a few years ago and they are good friends. I love the girl too! I am also half German and would love to see my heritage. Where are you leaving from?

From Chicago to Munich. Hopefully. I am hoping that we get to go!
Thank you for all your input. You seem to have done much research on the subject.
I don't know that my first doctor was well informed about everything, but it is hard to tell because I saw so little of him. He primarily deals with cancer. My new doctor only deals with ITP. He is maybe in his 40's. Says he stays away from cancer. I have to admit, I would, too. I am wondering if he became a hematologist because of his own first bout with ITP when he was 17. I think I told you it was 20 years til he had his second. Probably never thought he would have that again!

RH,

Sandi just posted a great journal article about the pros and cons with treatments. You should def read it!

I often get frustrated with my local hematologist especially when I tell him how tired I am. He once replied " we'll you are young and look great." He made me feel like I was making it up . He really just doesn't understand it and deals with mostly cancer patients. Im like a celebrity when I walk into the office because i am the youngest one and the only current ITP patient.It is so cool that you found a doctor who has personal experience with the disease and can relate to what you are going through!

I went to an ITP specialist at Cleveland clinic last month and am going in June again. I wish i lived there some weeks so I could see him regularly. He is treating me now even though I go to the local hematologist weekly for CBC and Nplate. I don't mind too much because I have gotten to know some of the patients and I love the nurses, but tend to ignore most of what he says now.