Tapering on the Prednisone - Adult Athletes?

So here's the deal...

I'm starting my 3rd week on 60mg of Prednisone.

Last Friday my Platelet count was 292. That's up from 47 when I left the hospital two weeks prior.

I had an appointment with my hemotologist on the 14th, which is still 9 days away. I called and told them I'd prefer to start tapering ASAP. Hopefully they will call me back with the "go".

I was on 80mg of Prednisone while I was in the hospital and they sent me home with a prescription for 60. I am a regular trail runner and I have about 3 local trails that I run about every other day. My first day back on the trail was rough, could barely keep a pace up my first hill, which is a warm up, but then I just slowed my cadence and ran steadily to the summit.

Today I ran the same trail with a very strong time, back to normal.

I take my prednisone at 6:30 AM every morning, which is also the time that I start my run.

When I left the hospital (on 60, from the 80mg of prednisone that I was getting while in the hospital), I noticed that I would feel jittery, and all I wanted to do is just chill out at around 7PM every day. I figured that was when the side effects would come in. I was able to accept that for the most part.

So I am trying to brace myself for this tapering process. Honestly I am more worried about that and my trail running performance, than I am my platelet counts. I have several races this summer and I want it to be a good one.

I'm wondering if there are any athletes in this forum who are adults, and how did the tapering affect your performance. Do you suggest taking the prednisone before or after workouts? How much before or after?

My thinking is that if I wake up, take the drugs first thing, and hit the trails, even though I am tapering, the withdrawal symptoms won't kick in until later in the day... after my workouts. I'm actually hoping that will be the case.

I don't know. Just trying to strategize here. Would appreciate any help or tips!

Mark

Mark:

I'm not an athelete by any means, but the Prednisone taper will usually cause an overall weakness that can last until you get off of the drug. It doesn't matter what time you take the pills. You might be in better shape than most, so maybe it won't affect you as much. WIthdrawal can be tough though and doesn't just occur during a certain part of the day.

I had a lot of shortness of breath wile tapering, as well as jello legs that could barely walk let alone run. Ideally, Prednisone should all be taken in the morning because that is when the body produces cortisone. I was all jittery too and shook a lot. Then comes the burn out at the end of the day when you feel the most fatigue. The thing to remember is that Prednisone side effects and Prednisone withdrawal are two different things. It can get worse the lower the dose goes.

OK so I can expect to be bedridden from this. Great news.

I have a few questions for you...

1. What dose were you on?
2. When did you start to taper?
3. I've been on 60mg for 2 weeks. Going to 40 starting tomorrow. Sound about right?
4. When did you get to the point where you couldn't walk?
5. Should I take a couple weeks off work during that last phase?
6. How old are you? (If you don't mind me asking)
7. How often do you exercise? At what intensity do you exercise?
8. Do you have any other conditions that may have intensified your withdrawal symptoms?

Bedridden? No. Exhausted? Maybe. I remember even sitting at my desk at work was an effort. As I said, if you are in good shape to start with, you will be better off. In the long run, it's better to keep the muscles exercised to avoid atrophy (as Prednisone is known to do).

1. I started at 60 mg's.
2. I started to taper about two weeks after I started.
3. Going from 60 to 50 might be easier, but going to 40 should be okay.
4. I never got to a point where I couldn't walk, but I did have weakness in arms and legs. You just feel weak and shakey as the taper goes on.
5. I couldn't imagine taking off of work for the taper - it was rough, but life goes on.
6. I am 40-something; was in mid-thirties when I first took Prednisone.
7. I used to exercise a lot (pre-Lupus), but I would never call it intense. Minor weights and stretches.
8. I didn't have any other conditions at the time that would have made withdrawal worse. Most people go through what I described, but there are a few who do not.

Read about catabolic steroids. You'll get a better idea of what they do.

Tapering off Preds? I've been trying for about 3 months. At 20mg my count may exceed 100k. At 15mg, the couts drops to 10-15k. Data obtained over the last 3 months confirm the threshold level. My doc mentioned a patient that was tapering-off in 1mg increments waiting for the adrenals to kick-in. Outcome was not disclosed. Right now I planning to switch to Promacta in May. Gotta do something about the Pred side effects........ I sleep 5 hours a night and the Cialis is expensive.

"hairball": how did the tapering affect you? Could you walk? Just curious

There were no problems during the taper-off..... like it never happened. When I was totally off Pred. everything was back to normal i.e., regular sleep, normal appetite, same sweet personality. But the Preds gives me the Jeckyl & Hyde syndrome. Doc sez a 10mg dose is about equal to what the human body should generate. Doc also sez a slow taper is the safest as it allows the adrenals time to recognize the level is/has dropped and its time to reboot. Without the reboot and no supplement, the body goes through contortions. Doc also sez sometimes (rare) the adrenals don't reboot and various steroids have to be unfused to keep the body functional.

Well okay, there is one person who didn't suffer the dreaded withdrawals! Not everyone does.

Mark - I never said I couldn't walk. You're starting rumors, man! I did not need a wheel chair, nor was I bedridden....I said I had JELLO legs.

hairball... (I feel funny calling you that, but whatever!)

Thanks for the input. Can you enlighten me with just a little more of an elaboration about your prednisone?

How much were you originally taking? For how long?

How did your tapering routine go?

Thanks for the additional info!

Mark

Sandi wrote:

Well okay, there is one person who didn't suffer the dreaded withdrawals! Not everyone does.

Mark - I never said I couldn't walk. You're starting rumors, man! I did not need a wheel chair, nor was I bedridden....I said I had JELLO legs.

mcafiero wrote:

Sandi wrote:

Well okay, there is one person who didn't suffer the dreaded withdrawals! Not everyone does.

Mark - I never said I couldn't walk. You're starting rumors, man! I did not need a wheel chair, nor was I bedridden....I said I had JELLO legs.

I never started any rumors. I do tend to exaggerate though, I needed to at least know that you weren't bed-ridden. I am so glad. I am so freaked out about not being able to run and bike and hit the gym, especially now that I am tapering. I am especially bracing myself for when I start under 10mg. Grrr.

But tell me this, sorry for all the questions... What was your diet like when you were tapering? Right now I am eating small meals every 2 hours:

7AM: 1c Grape Nuts, Fat Free Milk, Prednisone - one full nalgene bottle of water
[work out goes here, too - either a 45m. trail run (M.W.TH.Sat) or lift (T,F) - Sunday is a rest day]

9AM: Apple, Protein Shake - one full nalgene bottle of water

11-12 PM - Usually a cup or 2 of whole grain pasta or quinoa, can of tuna, fresh veggies - one full nalgene bottle of water

2PM - one apple OR banana and a carrot - one full nalgene bottle of water

4PM - one apple OR banana and a carrot - one full nalgene bottle of water

7PM - Dinner - usually fish or chicken, broccoli or asparagus, spinach salad - one full nalgene bottle of water

10-11, if I am starving: apple or banana - one full nalgene bottle of water

I can tell my appetite is pretty big, but I can keep from over eating simply by knowing that in just 2 hours I can have my next "meal".

I am wondering about the other people here who got so fat, I am hearing horror stories about people gaining 20-100lbs! Are these people eating well, or pigging out on chips and fast food all day long? If they are actually eating well, then I guess I am just screwed and should run away from society and hide out for about a year.

I am just nervous because I haven't heard too many stories about people who were able to maintain a healthy physique through this. Hairball is the most encouraging case study so far.

I'm not an athlete by any means but I do have a very high stress job (lawyer) and I commute daily (four hours or more a day, total), plus a little kid and family. Tapering down from 40 mg was not bad, going down to 20, pretty much the same and ten was doable. But below ten, man, let me tell you. It felt like being hit with a bat on all my body. Jello legs don't even describe it. I still managed to keep my daily routine, though. Just like Sandi said, life goes on.

Unfortunately, being on 5mg of Pred has landed me on the hospital with a 2k count, so be safe and keep checking your counts as you taper. Good luck.

Jey13 wrote:

I'm not an athlete by any means but I do have a very high stress job (lawyer) and I commute daily (four hours or more a day, total), plus a little kid and family. Tapering down from 40 mg was not bad, going down to 20, pretty much the same and ten was doable. But below ten, man, let me tell you. It felt like being hit with a bat on all my body. Jello legs don't even describe it. I still managed to keep my daily routine, though. Just like Sandi said, life goes on.

Unfortunately, being on 5mg of Pred has landed me on the hospital with a 2k count, so be safe and keep checking your counts as you taper. Good luck.

Thanks - how long did that brutal, barely-functioning period last for you? I am seriously thinking of trying to plan it so that I can just leave town for a bit and get away and not be a nuisance to people around me and just tell my clients that I am on vacation or something.

Jey13 wrote:

I'm not an athlete by any means but I do have a very high stress job (lawyer) and I commute daily (four hours or more a day, total), plus a little kid and family. Tapering down from 40 mg was not bad, going down to 20, pretty much the same and ten was doable. But below ten, man, let me tell you. It felt like being hit with a bat on all my body. Jello legs don't even describe it. I still managed to keep my daily routine, though. Just like Sandi said, life goes on.

Unfortunately, being on 5mg of Pred has landed me on the hospital with a 2k count, so be safe and keep checking your counts as you taper. Good luck.

Also wondering what you did to get your counts up after going to the hospital at 2K? How are things going for you now? Thanks

Mark:

I honestly didn't pay any attention to my diet. I only gained 10 pounds. People don't only gain weight because they eat a lot, Prednisone causes water retention. I had edema in my legs that moved up and caused my hands to swell too. As soon as I lowered the dose, it went down. Sometimes you have no control over it. Limiting salt and sugar can help. A lot depends on how long you are at the high dose.

Do you remember Jerry Lewis a few years ago? He gained a lot of weight from Prednisone use but he was on high doses for a very long time. If you are watching what you are eating and exercising, you may be just fine.

Just take one day at a time for now. You can't really schedule in when you are going to feel bad...you never know when that will happen. If you're lucky like Hairball, you might not have any problems.

Sandi wrote:

Mark:

I honestly didn't pay any attention to my diet. I only gained 10 pounds. People don't only gain weight because they eat a lot, Prednisone causes water retention. I had edema in my legs that moved up and caused my hands to swell too. As soon as I lowered the dose, it went down. Sometimes you have no control over it. Limiting salt and sugar can help. A lot depends on how long you are at the high dose.

Do you remember Jerry Lewis a few years ago? He gained a lot of weight from Prednisone use but he was on high doses for a very long time. If you are watching what you are eating and exercising, you may be just fine.

Just take one day at a time for now. You can't really schedule in when you are going to feel bad...you never know when that will happen. If you're lucky like Hairball, you might not have any problems.

Yeah I have cut out all salt from my diet and don't eat any more processed foods. And I drink a LOT of water, because I know that you are more likely to retain water when your are dehydrated. So we will see about that.

As for my first day at 40mg, no difference at how I feel. I ran strong for 20 minutes, bicycled for about 45 minutes (my daily commute) and hit the weights for the first time in 3 weeks since being diagnosed with ITP and felt stronger than I had expected.

Got my CBC and platelets were down from 292 to 241. I am trying not to be discouraged by that.

mcafiero; Had a cat once..about the time logon's and passwords were in their infantcy. You can figure out the rest..... I sorta stuck with it. As for the Preds, there were several intervals on ups and downs depending on the maintenance regimen. The VERY FIRST episode (about '06) I started at 80mg when the count was 2k, and I really got wired..... all sorts of side effects but we got the count up. The taper was great on reducing the side effects but the count went down..... never stopped the Preds until I did the Rituxan program about '08. I was off Preds for about 6-8 months. I always felt 'normal' when I was off the Preds. Then tried Nplate with sporatic results. Had to use the Preds to keep the count in the safety zone. In Jan. 2010, did a re-treatment with Rituxan but its been 3 1/2 months and it's not working. So I'm still at 20mg Pred. In April I'm planning to start Promacta.

I can only surmise that my adrenals are quick to respond to maintain a baseline level when I taper and that keeps me feeling 'normal'. However the baseline allows the count to drop below the safety zone.

Mark:

I'm curious what you do for a living. You seem to want to control your counts and side effects on a planned schedule. This is a comment made out of love, not meanness.

ITP is a "go with the flow" disorder. That is hard to accept at first, but if you want to manage this successfully, you have to take one day at a time. You never know from one day to the next what will happen. The taper withdrawal doesn't happen with the first dose drop. It might take a day or two to notice. As I said before, you might do just fine. You are stronger and more vigilant than most, so just keep doing what you are doing but don't kill yourself trying. Too much water isn't good either....it dilutes electrolytes. Also, if you are exercising, sweating and not ingesting any sodium, you could get yourself into trouble there. Prednisone also depletes potassium and too much water could cause excess depeletion. Eat banannas. Drink Gatorade. Don't overdo things trying to over-compensate.

I'm saying this because I'm worried about you. You cannot totally control what happens to you no matter how hard you try. You'll be okay.

Hi Sandi,

I'm a photographer .

I shoot a lot of weddings. I'm scared to death that this is going to cause me to miss a wedding - photographing the most important day of someone's life. That would be devastating to both my clients and my career.

My #1 passions in life are mountaineering and trail running and cycling. I'm also scared to death that I will never be able to go on a 5-day backpacking trip again. There are over 50 14'ers in CO. My dream is to bag them all, right now I am at 18. And the day that I can't ride my bike to the studio is going to be a very VERY bad day.

It seems that the 2 most important things to me are being compromised.

I have accepted that I have this issue. But I want to do WHATEVER I can to NOT get fat and overweight. It will certainly destroy the ONLY thing that brings me true happiness and that is my outdoor recreation.

So I am just trying to do all the research that I can. I care more about living a long, healthy life than I do platelets. So that is why I am so worried about this Prednisone. So far in the month I've been on them, no side effects.

I have a very good understanding of health and nutrition. So I am trying to use this as an opportunity to rid myself of any previous bad habits and form really REALLY good habits. So that when the time comes that this Prednisone decides to kick in and ruin all of the things that I love, maybe, just maybe I will be able to get through it without turning into a fat, depressed waste of space.

So that's where I'm at. I'm more scared of the Prednisone than I am the ITP and I will take a splenectomy at the first sign of losing what means most to me in my life.

I just wrote a long reply and lost it. I hate the way this forum works which is why I don't come here often any more but I wanted to say that Mcafiero you are worrying unnecessarily and sounding just a tad hysterical.

People gain weight on pred because they eat too much. There isn't some magical thing that makes people on pred gain weight. It's that simple. Okay you might retain some water for a few days, I did, but then a few days later I'd pee all day and lose it.. big deal. I never missed a day's work while on pred and neither will you. Just carry on as normal and you'll be fine. You aren't going to be on pred for long. It isn't a long term option or it shouldn't be and if your doctor wants it to be you need to find another doctor. Chill a bit and carry on as normal.. it's really no big deal.

Ann wrote:

I just wrote a long reply and lost it. I hate the way this forum works which is why I don't come here often any more but I wanted to say that Mcafiero you are worrying unnecessarily and sounding just a tad hysterical.

People gain weight on pred because they eat too much. There isn't some magical thing that makes people on pred gain weight. It's that simple. Okay you might retain some water for a few days, I did, but then a few days later I'd pee all day and lose it.. big deal. I never missed a day's work while on pred and neither will you. Just carry on as normal and you'll be fine. You aren't going to be on pred for long. It isn't a long term option or it shouldn't be and if your doctor wants it to be you need to find another doctor. Chill a bit and carry on as normal.. it's really no big deal.

Hi Ann - Thanks for that, I think this is exactly what I needed to hear. I am definitely going to make a point to my doctor that I want to be off Prednisone ASAP and try other treatments if needed. I have heard good things about WinRho.

Mark,

I wouldn't say I was barely functional. Like I said, my job and life are very demanding and I didn't have to miss work or anything. It was just that I had to go about my life feeling like crap. It lasted about two weeks, but I was told to expect something like that whenever I taper down, even if it's half a gram.

To answer your second question, I am currently at the hospital. I've been getting Solumedrol, 80 mg every 6 hours. My last count was 17k after just one dose of the steroid. Had a platelet transfusion last night and I'm waiting for my las blood work. If I have not improved significantly, my doc said I was getting IVig next.

Jey13 wrote:

Mark,

I wouldn't say I was barely functional. Like I said, my job and life are very demanding and I didn't have to miss work or anything. It was just that I had to go about my life feeling like crap. It lasted about two weeks, but I was told to expect something like that whenever I taper down, even if it's half a gram.

To answer your second question, I am currently at the hospital. I've been getting Solumedrol, 80 mg every 6 hours. My last count was 17k after just one dose of the steroid. Had a platelet transfusion last night and I'm waiting for my las blood work. If I have not improved significantly, my doc said I was getting IVig next.

Oh so when you said you landed in the hospital, you are referring to right now! I hope you get out of there soon. Have you ever considered trying WinRho? I have been encouraged to ask my doc to get me off Prednisone ASAP with the goal of trying that out. It's successful in raising counts by at least 20K in about 80% of patients, so I am hoping that I can fall in the upper echelon of that number who react in the 50-60K range.

mcafiero wrote:

Oh so when you said you landed in the hospital, you are referring to right now! I hope you get out of there soon. Have you ever considered trying WinRho? I have been encouraged to ask my doc to get me off Prednisone ASAP with the goal of trying that out. It's successful in raising counts by at least 20K in about 80% of patients, so I am hoping that I can fall in the upper echelon of that number who react in the 50-60K range.

I am currently at the hospital. To tell you the truth, my hema wants to take my spleen out. It's kind of complicated, because I live in a tropical island, endemic to things like dengue fever -there's an epidemic right now- and he thinks it wouldn't be safe for me to have counts under a 100 in this kind of environment. I wasn't very happy to hear that, so I went and get a second opinion, and was told the same .

I guess after this I'll have to consider it, because even though I respond to Prednisone, it is obviously not a long term solution. I've been on it for more than 6 months.

Jey:

Your doctors think it's safer to not have a spleen with dengue fever on the loose? Sometimes things like that make little sense to me. I guess you have to do what you have to do though.

Mark:

I'm glad you took Ann's advice well because she is right. I work for lawyers in a very fast paced enviornment with deadlines...constant multi-tasking and stress. I didn't miss a day while on Prednisone and I didn't miss a day with counts below 5. The only days I ever missed because of ITP were the days I had Rituxan.

I doubt ITP would interfere with your appointments. You have the choice to NOT allow it to interfere. I understand your concern; you don't want to let anyone down and wedding days are important. People can keep going during ITP and treatments. I'm not saying it's easy, but you can do it. I'm jealous - I want your job. Photography is my ultimate hobby and I take it seriously. I'm a dedicated SmugMugger.

As for jumping into splenectomy just to end ITP - make sure you know all of the pros and cons. Splenectomies can cause all sorts of future problems that you should be aware of. Sometimes it's trading one problem for another.

You're worrying too much. I can guarantee you that most of us did not gain 100 pounds and stay that way. I gained 10 and ate what I wanted. You'll be fine.