new and ready to get off prednisone

Hi all, I found this site after my diagnosis in Feb this year. Glad to have found so much good discussion and information!

I see so many warnings about long term prednisone usage...but what is considered "long term" and what is considered "high dosage"? (In terms of the impact on the body and risks for other problems...diabetes, hump back, etc.)

My background (sorry for long post)… I am 46 yr. old female. Diagnosed with ITP in Feb after a low 22k platelet count was found during a physical. I hadn't had a physical in several years, but had been bruising for quite while. I attributed it to becoming vegetarian about 4 years ago (I’m still not convinced it is not connected). I knew the bruising was not normal, but I didn't' have it checked out because I thought I could correct it myself with diet. It never went away and I just kind of ignored it. In December, I had other side effects, that I thought I would mention to dr. when I finally went in for a physical. In February this year I came down with an upper respiratory virus that finally sent me to the Dr. He diagnosed me with bronchitis and put me on a week of prednisone. He also ordered the physical and I told him about my bruising and that I was sure I was low iron an/or anemic from becoming veg. He ordered the blood test and called the next day to tell me about the low platelets and asked me to retake the test. (My iron was ok and was not anemic.) I had been on Prednisone for 3 days at that point, and my new count was up to 50k. He asked me to wait two weeks before retesting to the get Pred out of my system. When I retested it was down to 11K. He seemed very concerned and referred me to hemo. I was surprised, but not worried since I felt fine and I didn’t know what this all meant. The hemo put me on 60 mg Prednisone/day and did all sorts of other tests. I had no idea what I was getting into with the Pred. I went in for weekly tests and my counts went up right away. After one week the count went up to 172k. He lowered the dosage to 40 mgs. and the count dropped to 43k. So he put me back up to 60 mg.

My counts went back up and he then started lowering me by 5 mg./week. I was starting to feel pretty terrible from the side effects by then and was really anxious to taper off of it asap. But last week the counts dropped again, so I am back to 50 mgs. I feel like I am getting nowhere fast. I am really miserable on this medicine and am concerned about the long-term effects and weight gain. My body has changed so much already, not to mention my mood and overall uncomfortableness. I am going in tomorrow for my weekly test and I am planning to talk to the dr. about this. But how in the world do you taper off of pred if your counts are falling? I guess people do, because not everyone responds to pred, but I am responding, just not when he lowers it by much. I just don’t want to be on this for six months or more. Thoughts?

My thought and the one I live by:

When it gets to the point where you cannot tolerate it, it's time to discuss other treatments. It's your life, your body.

Good point Sandi. Thank you.

Amen to that.

I've been on pred for almost two years - at very high doses for several months, have been tapering for the last 8 months. This tail end of the taper is a bitch, and I will NEVER take this again. So it's time to start on the next options on the list for me when my counts drop again.

You have to find a doctor who will work with you as a partner in your treatment and not as the "grand master" who dictates your treatment. I've had those type of doctors, and they nearly killed me.

Oh my word.. this is my story exactly!..Okay.. not exactly.. but VERY similar. I'm 26 years old, female.
I was just diagnosed a month ago... I was totally fine except for bruising... got a VERY nasty bruise from a little bump and went to the school clinic, and found out my platelets were at 14... went to the hospital and they put me on Prednisone (60mg). The doc wanted to put me on 70, but since they come in 20mg, it was easier for 60.
I've been on it for a month now and it is HELL!! I had to move my graduation date from THIS semester to next because I can't focus anymore...8 years in college, JUST about to graduate..and then this... awesome. And not to mention the mood swings, acne, horrific sleep, etc. Don't you just loooove how they breeze over the side effects in the hospital?.... Right.. weight gain.. mood change... Oh.. and a TON of others that will shred your quality of life like a kitten with a new found paper bag. Okay..I'm done ranting...

Last week I went to 50mg and my count went from 95 to 42.. so the doc wants me to go back to 60... But I'm going to wait a week and just watch my body closely. (It's the school doctor...and she's not entirely sure what to do with me.. she's just a general practitioner). I'm eating so incredibly healthy now, and I feel like my body can't do it's job with the poison from hell known as Prednisone swimming through its system.
I haven't gained any weight yet cause of the change in my eating.. I completely cut out sugar.. and only eat fruits, veggies, nuts, grains, beans, and fish. NO crap food, processed, etc.... It'll be interesting to see where my platelets go in the next week... if they go down, I will most likely have no choice but to go back to 60mg...since 42 is creeping close to the danger zone. Ah but if they go up! HA HA! I will be sure to let you know!

I don't know if this is helpful in anyway.. but my goodness is SO nice to know I'm not alone in this!! It's so hard to explain to my friends! My best friend is all about modern medicine and science, so he's happy for me to be on the Prednisone and has NO clue what it's like...and I've only been on it a month! I can't even begin to imagine what it's like to be on it for years... Lord have mercy!

Kate

JTX - To answer your question on long term use and high dose, i found this on the net

What doses of steroids are used?
steroids vary in strength. The beneficial effects as well as the side effects are proportional to the dose taken. Steroid dose is commonly characterised into:

•Low dose (e.g. <10mg/day of prednisone)
•Medium dose (e.g. 10-20 mg/day of prednisone)
•High dose (e.g. >20mg/day of prednisone, sometimes more than 100mg/day).

Treatment for less than one month is considered short term treatment. Treatment continuing for more than 3 months is regarded as long term, and results in the majority of undesirable side effects.

I agree Kate, it is nice to know that other people are going through the same thing and we can talk to each other and whinge to each other about how we feel without people thinking we are over-reacting. It always the people who have never been on pred or use it for other reasons (arthritis, and not criticizing them or being rude) that think it is such a wonder drug, but when you use it long term and high doeses for quite a while, it does take it's toll on you and makes you feel like crap all the time. I was on 40 mgs at least for most of the 3 and a half mths i was on it and i couldn't wait till i was finally off it.

Just to reply quickly to Kate - don't fret too much about the drop in the first week - your body needs a little time to adjust to the drop in pred and it was common for me to go down a little bit with a taper, and then come back up and even off again. In fact, now I don't even think of tapering anytime close to when I'm getting a count. I get a count, THEN I taper. I try not to get a count within a few weeks of tapering because I know that's when my body is doing the whole "what the hell? where'd the pred go?" dance and it needs a little time to figure it out.

You do need to consider talking to a different doctor, because you should not be on that high dose of pred for that long, there are other treatments to consider. Don't be like me and get shoved on a high dose (50mg) and stuck there for months because your doctor doesn't know what to do with you. Research, research, research, read everything here and do everything you can to find a hemotologist who can guide you through this. WinRho is a good next step, for the people it works on (me sometimes) it can last 1-3 months, it's a short iv push that you do as an outpatient and has WAY less side effects than the Pred. I've also gotten IVIG but that's really only a temporary solution and it's got a REALLY long infusion time, takes hours and hours and did not work for me at all (tried it twice before we gave up).

Others on here can suggest other options, that's just what I have tried.

Thank you thank you thank! That is great to read... cause I was a little worried, but not enough to go back to 60. You just made me feel MUCH better about about my decision to stay at 50..... of course.. now I'm all ready to go to 40. Dang I really need to get to a hematologist!

I love the "Where'd the pred go" dance line... that cracks me up. Hopefully the dance doesn't last too long....

Hi Kate, yes it is so helpful to share our stories and commiserate with each other. I'm sorry you and i seem to be going down the same path though. I am glad to hear the healthy eating is helping you with weight gain. I am determined to do the same!

Angle85, thank you for the info on dosage/length of time, very helpful.

Siliconvalleygirl, i am curious why you stayed on pred for two years? You are still tapering off of it?

Update...I have been swelling so much this week in my feet and neck that I called dr. today and said i didn't think i could make it through another week on 50 mgs. So he said drop it to 20 mg/day until my appt. with him next wed. That is a pretty drastic drop...hope it is ok. I just need some relief from this.

50 to 20! Whoa!... I wanna do that! Please let me know how it goes for you!

And yes.. the healthy eating is a God send.. It seems weigh gain is the only side effect I can put my dukes up to and say "HA! Take THAT you stupid prednisone!!" ... I've been eating almost all raw foods (here and there I do cook a few things).. NO white sugar, and no white salt (I use himalayan sea salt, if I do ever salt anything..which is few and far between these days....).

A drop from 50 to 20 might be rough on you physically and might cause counts to really drop. I hope it works out for you okay.

OMG from 50 to 20? That's a huge drop ... don't think I'd be brave enough to try it. I'm now starting my third week after tapering from 4mg to 3 1/2 and I'm still feeling sluggish and exhausted.

>>Siliconvalleygirl, i am curious why you stayed on pred for two years? You are still
>>tapering off of it?

To answer that question - when I was first diagnosed, the doc put me on 20mg of pred and also started me on imuran. I slowly upped the imuran and lowered the pred but was never all the way off. From the imuran, my immune system crashed, I got sick, ended up with infections everywhere, in the hospital, emergency surgery etc. etc. and under the care of a new hematologist who panicked at my single digit count and medical condition and put me on 60mg. That was in May of last year. I was on the 60mg for about a month, then 50mg, etc. and am only now at the end of that taper. Yes, you read that right, I've been tapering for almost a year. I really thought I'd be off now, but these last few MG have been physically hard. If I didn't have a job or two kids to deal with and a husband working nights I could probably taper faster because I could lay in bed like I want to . But because I have to be functional - I think I'll be tapering for several more months. My muscles have decayed to almost nothing (also thanks to the pred) and until a few months ago I was a size 20 (was a size 10 prior to prednisone). I'm working hard on the diet although exercise is difficult right now but have struggled my way back to a size 14. I'm also finally off the blood pressure meds that I had to take at that high dose of prednisone and my blood pressure is back to the 120/80 that it used to be.

And that is why I do not want anyone to stay on high dose pred for very long if you can help it at all! It's because I've been on this drug for so long that it's very painful to get off of it, and the side effects have brutalized my body. The less amount of time you're on it, the easier it is to get off because your body is not dependent upon it yet.

Yeah, well I guess I am about to find out what the effect the drop has on me. Can I feel worse really? (I'm guessing yes.)

SVG, thanks for sharing your cautionary tale about pred...that is exactly what I am trying to avoid. And your experience with imuran sounds terrible. This is why I am considering watchful waiting. Too many stories about problems from the treatments...I don't know, but I don't want to wreck my body. You do what you have to do though.

Good luck, jtx!! Please let us know your results! I'm anxious and excited for you :blink:

You may be okay going to 20mg. When I was on it they said that you can go fairly quickly down to 20mg and then you have take it more slowly. Having said that I did 10mg drops per week but if you haven't been on it for long then you can go more quickly.

What's the definition of "haven't been on it for too long"?.. I've was 60mg for 3 weeks, and now 50 mg for 2... Labs are tomorrow..and I want to go down to 40 as soon as I get them done... (My count was 42 last week... so hopefully it went up or stayed the same)

Well, the textbook version and my version are two different things. "Not too long" in books might be a few months. "Not too long" to me is a few weeks. I felt horrible after each taper, and was only on each dose for a few weeks. It affects us all differently though.

Well my drop to 20mgs lasted two weeks. Sadly, my counts dropped pretty fast from 172 to 80 to 33. So my dr. discussed next steps with me. He agrees I need to get off pred. But he is suggesting splenectomy. I told him I was thinking about just doing watch and wait as all of the short term treatments seem kind of pointless. He basically tried to scare me straight, said I wasn't seeing the big picture. He opened my eyes a bit and I am now considering my options. He doesn't want my counts to get to a dangerous level before we do the next treatment, so he upped my pred to 40mg. And, I'm back to feeling pretty miserable.

He suggested IVIg as a band-aid to buy me some time while I decide what to do. I was scheduled to start it next week, but it is taking a while to get the insurance approval and find out what my costs will be. It will be expensive for me.

I've been re-reading a lot of posts on here to learn about the treatment options. Seems like most are expensive and I am feeling very confused. Wondering if the infusion is the right thing to do now since results likely won't last. I am going to start macrobiotic diet this week. That is something I can do now and it can't hurt right?

Also curious, is there any kind of logical order to do the treatment options, or is it all just a guessing game? I would really just like to trust my dr.

I went from 40mg to 20mg in one hit and it did't really affect me, I got some mild headaches, but nothing really bad like i had been hearing. I suppose it hits people differently.

jtx, have you read the new international guidelines about treatments and what counts as first line, second line etc? They are at..

bloodjournal.hematologylibrary.org/cgi/content/full/115/2/168

hi Jtx,

it sounds like you are tapering too fast and your body is not adjusting, i think it might help for you to slow down the tapering process. Once your counts appear to be stable at 40, drop to 30 and stay there until the counts once again appear to be stable, then drop to 20 until your are stable. For me, i think that most critical change in pred occurs between 20mg and 10mg. Therefore, I took alternating doses until my counts were stable enough to drop to 10.

I know first hand the side affects are not easy, but I made a conscious decision that I would stick with the medication, rather then removal of my spleen.

Also don't feel like you need to internalize your struggle. Pred makes you want to scream, it makes you want to cry, then it turns around and makes you want to do nothing. If you are going through these emotions don't bottle them, just go along with them it really is okay. Take control of your life, don't let pred control you.

Michel

Thanks for this Ann, very helpful.

Michel, Good points, thank you. If I thought the outcome would be positive, I would do the slower taper. Just concerned about long-term usage and implications. This cannot be good for my body. But what you say makes sense and I would hate to miss a remission because we rushed it. At what would you consider the counts to be stabilized? One week, two weeks, more?

Would people do infusion and slow taper preds at the same time?

Do you mean IVIG infusions? Yes, you can do that and slow the Prednisone taper. It might make for a longer remission in the long run.

I'd consider two to three weeks to be a time to stabilize before tapering.

Everyone has their own opinion, but I think the very first time you use Prednisone, it should be a slower taper. If you rush off of it, you'll never know what it might have done for you if you had given it a longer run. I found that rushing off of it only ended up in having to go back on it. Now that is for people who respond. If you don't respond, no need to stay on it.

You can also go down the treatment line as most do. I did, and ended up back with steroids anyway. I never bothered with IVIG because of how temporary it is and the high cost, not to mention how long it took to infuse. In an emergency it is great, or if I hadn't responded to anything else I might have tried it. My treatment choices always revolved around how much work I'd have to miss. If that's not an issue for you, go for it and give it a shot.

None of it is good for your body, but you just have to take each platelet drop as it comes and do what you feel you need to do.

Thanks Sandi. Gamma globulins infusion...is that the same thing?

I have responded to pred at the higher doses, they just drop when we taper, but maybe because too fast.

Yes, it's the same thing.

Hi, I'm Kim. I'm 46 years old and I was diagnosed 3 weeks ago with ITP. I had been scratched recently by one of my cats (he had been freaked out by a passing crow as I was holding him so it wasn't his fault). The next day I noticed red spots on my legs and arms and I had a nosebleed. The day after that, I woke up with blisters inside my mouth, and my nose was bleeding heavily. I thought that perhaps I hadn't cleaned the cat scratch properly and was having a reaction, so I went to the walk-in clinic thinking I needed some antibiotics. They referred me to the ER, where they kept me. My platelet count was 2. They started me on 60 Mg's of Prednisone and my platelet count rose instantly. The first day it was 4, then 11, then 36 on the third day and they released me from the hospital. When I saw my hematologist last week my count was 267. He started tapering me off of the Prednisone. I am taking 50 Mg's now for 2 weeks. The first day I dropped 10 Mg's I was in bad shape. My face was flushed, I felt dizzy, my body ached so badly as if I had a severe flu. This lasted for 2 days, then I started feeling better.
I have another blood test next week, then I have to taper down to 40 Mg's next Friday. I am already dreading it.
I feel like I am trapped on this medication now. I had no idea it would be so difficult to get off of, as I had never even heard of it before my incident. Nobody really understands what I'm going through because it's hard to explain to people the way this medication works.
I have no other health issues and this is the first time I have been on prescription medication. I'm scared to take even an Advil as long as I'm on this because I don't want to bring on any unnecessary side effects. I'm trying to eat good, healthy foods and avoid blood thinning foods. I love hot wings but I'm scared to eat hot sauce. Am I over-reacting? I won't really relax until my next blood test. Then I'll know if my body is starting to produce some platelets on its own. What a strange condition! I had never even heard of this before and now I have it.
Thanks for listening!

Kim:

Hot sauce won't hurt you and an occasional Advil is okay. You have to enjoy life too.

You're not trapped on Prednisone. It can feel that way, but you will get off of it.

First of all, what's wrong with hot sauce? I don't think it is implicated in any way in platelet disorders!

Second, maybe you've got an acute case that won't trouble you any more - a reaction to the cat scratch - let's hope! Yes prednisone is tough, I agree. Good luck, and I prescribe eating a lot of hot sauce. It kicks up the endorphins which couldn't hurt.
Erica

I'm just scared to eat anything that might thin the blood. Maybe I'm being overly paranoid.
I'm not one to go to the doctor regularly, so I'll never know if my platelet count was low before this. I was feeling overly tired for a while before this incident, so maybe it's not acute. I don't have youth on my side, so from what I've read it would be a miracle if it's not chronic.
jtx, it sounds like your doctor is going too fast with you regarding the Prednisone taper. I dropped 10 mg's and felt so bad! It sounds like you're swinging around like a yo-yo on this stuff. From what you say, the Prednisone is working, so it would make sense to do a much slower taper. I wouldn't rush into a splenectomy. That would be the last alternative for me. How are you doing now?