Prednisone - How Bad Could It Be?

Good afternoon everyone:

I hope that you and your families are getting ready to spend some relaxing time during the holidays and potentially worry free from issues of ITP.

I wanted to ask people's experience with the Long Term Side Effects of Prednisone usage, as well as "warning signs" that they are having a negative affect, and remissions with it.

1. I've read things about Prednisone affecting hips? Does the drug have an affect on the joints? What exactly does it do? Does anyone have knowledge of this?

2. At what point can people get away with taking a very low dosage of prednisone, and keep their ITP in remission? Can you or have people only had to take like 5 mg every two days? 2 mg a day? Has this kept ITP away, and does such a low dosage have any negative effect?

3. How long have many of you stayed in remission from ITP after a Prednisone cycle? What dosages did you take and for what amount of time?

VP:

1. Prednisone can cause avascular necrosis, which is hip bone death. When that happens, the only fix is a hip replacement. It's rare and usually won't happen after being on Prednisone once or twice for a reasonable period of time. It can also cause cataracts, glaucoma and arthritis - three more long term side effects.

2. Some people respond to low dose Prednisone, others do not. The body naturally produces about 7.5 mg's of cortisol daily, so any dose under that shouldn't do much, if anything anyway. Yes, a low dose will have a negative affect over time and isn't the best way to manage ITP.

3. I have had a remission after a Prednisone round. I started at 40 mg's (hemo wanted to start at 60) and took it for about three or four months total, including the taper. I stopped going for CBC's because my counts were good, but three years later found out they were in the 30's. Shortly after that, I was back on Prednisone. There have been people who have had very long remissions from Prednisone.

I've been on Prednisone for the past 6 years at varying doses. Between 5 mg's and 20 mg's daily. I don't take it for ITP, although it might have some affect on my counts. I do worry about long term side effects, but I can't think about that now. I have to do what I have to do for the moment.

Prednisone put me in a "remission" [lower than normal count but no treatment] for 8+ years. I was on it 4 years - started at 60mg, we moved overseas & I knew more about ITP than my hematologist in one of the places we lived so I wouldn't go off it and chance a crash, the last 2 years was a very low dose. Would I have been on it that long had I been living at home with the hematologist I had - no. I've had ITP for 21 1/2 years.

I know someone who has been on various doses of prednisone for over 20 years for an autoimmune disease & will be on it the rest of her life - the skin on her arms and legs is tissue paper thin, doctor says from prednisone. Her arm or leg will rip open if brushed against something, like the door frame or a chair etc - it is horrible.

I should add that a tetanus booster brought me out of that "remission" from prednisone - I refused prednisone because our son was getting married so had WinRho, it put me in another "remission" which so far has lasted 8 years.

Yeah, the thin skin. The only thing I notice on me so far is the ability to see a lot of my veins (chest, hands and underside of forearm).

I've been on small to medium doses of prednisone for most of the past 10+ years. So far, I've not suffered the long-term side-effects though I do worry about them. I have been checked for avascular necrosis in the hips and get bone density tests fairly regularly. When my dose is above 5 mg/day, I take Fosamax (though that may have its own problems). I exercise regularly though much of my exercise is in the water, which, of course, is only somewhat weight bearing (I wear resistance devices). I think I eat wisely. I know all this doesn't protect everyone from the negative side-effects of prednisone, but it does seem possible to avoid at least some of them. My ophthalmologist has told me that my cataracts (recently had 2nd surgery) were NOT caused by prednisone (they can tell). I do not have thin skin.

I have been lucky in that I have responded quite well to prednisone and have had very few of the short-term side-effects too. Insomnia is the most difficult for me--when I am above 20 mg/day. Since NSAIDs are forbidden, the pred has helped my arthritic joints a lot.

Neither splenectomy nor rituxin worked for me. I'm sorry I didn't get to try WinRho before the splenectomy. Right now, prednisone seems a little safer to me than the alternatives available to me.

We are all so different that I can't respond to your numbers questions with any conviction. Sometimes a medium (15-20 mg) dose will push my platelets up to the 40s to 60s. Sometimes 5-10 keeps my platelets in the 20s. Sometimes not!

I've been on Pred at various doses since 2004 when I was diagnosed with ITP. Right now, I'm 4 days away from being totally off them and can't wait. I recently found out I have arthritis in my feet, but don't know if that's from the pred or not. I don't really have any sign of the arthritis, doc told me I had about a year/year and a half before it really shows itself. Don't notice any thinning of the skin, although sometimes it does feel funny.

But everyone is different and it won't affect everyone the same way.

Good luck with your pred dose.

Merry Christmas and Happy New Year.

I'm one of those that takes low dose prednisone. I take 5 mg every other day and it does seem to affect my platelets. I have tried to get off of it a number of times, but they always fall, although I live in the hope of one day getting off of it.

At this level, I don't really notice the side effects, but I still worry about osteoporosis at this point, although the bone scan I had last year was still good. My hemo assures me that prednisone at this level is harmless. He says anything under about 15 mg is OK, but I'm not sure that I believe him.

Hope that you have a good response to it and few side effects.

Lily

I have been on prednisone for my ITP for a month now.
I started at 200 mg a day because my count was at 2,000. After a few weeks my count was high enough to start tapering.
I get to go down about half a pill (10 mg) every 4 days as long as my count has gone up. I am now at 100 mg a day, so still a very high dose. But my platelet count is up to 120,000!
As far as the side effects go, they are terrible!
I do get joint point in waves. Like sometimes I'll be walking and my knees will start to hurt really bad, or my ankles. I also get a weird numbing feeling in my legs occasionally.
I am hungry all the time and the thought of food has consumed my life. I have completely avoiding weighing myself, because I find it easier to just not know how much weight I have probably gained. Mostly, It is bloating in my stomach.
The worst side effect so far is the "moon face". I have gained so much fat on my cheeks, I do look like a chipmunk. I was looking at pictures taken from christmas today and it is very bad. I do hope it goes away soon, because I am very ugly now.
I have also gotten very bad acne from the prednisone. I had very nice skin up until 2 weeks ago. I now have these red bumps and white heads that cover every inch of my chest, back, necks, and upper arms. I also have a few breakouts on my face.
I now hide in my room all day and eat.
So as for "how bad can it be?" - very bad.

Whew, am I glad to see that Prednisone is the one that is causing my knee joint pain! I thought I was just getting old, lol! I have been a baby this past week and complaining about my knees everytime I had to go up the stairs, especially when I had to carry the vacuum upstairs. But, on the upside...I've had enough energy to clean out every single pantry in my kitchen and do some things that I've been putting off for years. I am just trying my best to ignore the joint pain, but the hip pain is a little concerning because I found that it hurt too bad to cross my legs the other day when my family was all sitting on the floor opening presents. Then the other thing I found out I couldn't do that was so simple, was shuffle a deck of cards! Go figure! And I'm only on 40 mgs of Prednisone. Not sure when my taper will start, but I think my dr was looking at raising my dose before dropping it when I see her next month.

At what age should I ask for a bone density scan? (I am 38.) I was on 100 mgs for a year about 10 years ago and it took me a long time to taper. And speaking of weight vs dosage. I was 130 lbs when I was put on 100 mgs and now I weigh more and I'm not on as high of a dose. I really think it depends on the dr and what they feel is right at the time. I think the dosage is almost always negotiable because my dr was going to put me on 80 mgs, but then I talked her into allowing me to do half and go up if nothing worked.

Pauline:

I've had a bone density scan every single year since I've been on Prednisone. I don't think age has much to do with it. At first, my GYN was the one concerned about it, then my rheumatologist took over. Between the two of them, I always get the yearly.

I think it's interesting that some of you have joint pain on the higher doses. I didn't get that until the end of the taper. On the high doses, I felt great, like I had been lubed and oiled.

I'm sorry to hear that you have had such a bad experience... I was at under 1,000 platelets, and I was only put on 60 MG to begin.

200 Mg a day is VERY high to be honest. Maybe you should speak to your doctor about that? (But then again, everyone is different).

I am now on 40 mg a day (tapering 10 mg every 5 days). I'm guessing I will have to stay on Prednisone long term though... which I don't like, but it's easier than getting infusions it seems. I'm just not sure. Maybe I will go into remission with it for awhile?

My count nearly a week ago was 47,000. I get another count done on Wednesday, so we'll see where I am at.

Like I said, it's Christmas morning after the CBC, just waiting to see what my counts are going to be.

Yes, I am very confused as to why my doctor did put me on such a high dosage.
I had bloodwork today and my count dropped from 150,000 to 117,000. But my doctor said that anything over 100,000 is good, so I am now at 80 mg a day (still pretty high). I don't like that my count dropped though, sure don't want all these prednisone side effects to be for nothing.

I have been on and off pred for the past 12 years up to 150 mg and this time round had 100 mg per day. I put on 20 lbs in 6 weeks have a bloateds stomach and look like baloon on my face its as if I have marbles in my cheeks. I too get the acne.little re dpimples all across my chin excessive hair growth and poorly healing thin skin.I ache fomr th einside out especially when I start to taper and yes my hips are very sore. I had to stop seeing my chiro when my counts went below 1000 so I am all out of whack there too now. Pred also causes sugar issues for me and I get thrush as well so take apro biotic for that. I dont sleep and my heart races at about 3 -5 in the afternoon. I hate hate hate the stuff and usually refuse it but the ivig usually doesnt kick in for me until the second round so when I am bleeding the pred comes first.My body adjusts to the high doses though I feel like crud its when I taper that it really kicks in too. I guess I am one of those who seems to get every side effect.AFTer 12 years on and off it it has casued great problems wiht my weight and also induced gestational diabeties when I was pregnant with my son. I am down to 15 mg atm but things are stressful at our house so I will halve my taper from what doc wants as I know stress affects me.
Its hard to know what to do about taking it and also depends on your doc but you can say no you can always say no best to be your own advocate.

So I am now down to 30 Mgs a day. . . however, I am waiting for the results of the CBC I had today. About a week ago they were at 47,000. Today I am hoping they are the same, or even higher.

It's days like this that scare me though, because I know I can get a call in a moment, and they may say "well, your counts are down to 10,000 or less, so the Prednisone isn't working"... then I have to do something else.

That is the most frustrating part.

Quick update to my Prednisone Therapy Story:

So I am now at 30 mgs per day. I got my CBC results yesterday, and I'm at 100,000 platelets.

I am so tempted to just begin tapering to a lower dose right away, however, I don't want to jeopardize a chance of a long remission, so I guess I should continue on the taper schedule now of decreasing 10 mg every 4 days.

My question/worry is this: I am ok with taking a minor dose of this to keep my platelets in check, say 2.5 mgs or 1 mg a day, etc... that can't be that harmful long term to the body. I thought I even read on Wikipedia that people with ITP should take .25 mg a day, otherwise they will slip into remission.

You shouldn't use Wikipedia as a good source of medical advice. If you find something of interest on Wikipedia, find a reliable medical source like medline to confirm it.
Erica

Some of the statements they have on there do seem true and correct, and also coincide with things written on here.

"I thought I even read on Wikipedia that people with ITP should take .25 mg a day, otherwise they will slip into remission."


I don't understand that statement at all. There is no Prednisone dose that will either cause or not cause remission for everyone with ITP. People SHOULD take .25 mg's or they WILL go into remission?

The thing is ITPers want a remission - a remission means a decent count and not treating [or someone else would say a normal count and not treating]. If we can't cure we want a remission which is what I have been in since 2002.

So I don't understand that statement either.
.

Hey everyone,

I was on Prednisone for 6 years (starting around 1990).I was 15 years at the time.

I gained about 10 kgs. In the first year I slept about 18 hours a day. After a year it became bettter. I don't know if it was related to prednisone or my itp.

And since the use of Prednisone my skin hurts every once in a while. I forgot to take the preds sometimes and back than I thought the pain was related to not taking the preds. But my doctor never confirmed. Besides, my skin still hurts every now and then

I was on a high dosage for 2 or 3 years, than they reduced the dosage. In the last year I was on 10 to 5 mg every other day.

When the itp returned i don't remember getting prednisone. I believe I was on gammaglobuline and other stuff before having the splenectomy.

ps i think the results and the side effects can be different for everyone. When i was diagnosed i didn't look on the internet and at that time there were only about 6 young people in the Netherlands who had itp. i met 3 of them and noticed that we all truly responded different and also dealt with it in a different why.

Good luck and good health
Have a great evening

MC

ps 2 they gave me xxx mg of calcium everyday for 2 or 3 years because i was 15 an still growing.

I have taken prednisone every other day for 30 years. Most of the time at 10-15 mg.
I have had no side effects.

Wow, 30 years? And NO side effects. You must be a lucky one then.

I'm currently on 20 mg per day, and tapering down gradually. I get my CBC again on Thursday, so I hope things are still alright.

I'm taking 60mg of prednisone everyday for almost a month now..My side effects are: muscle pain, joint pain(sometimes but not severe),leg pain,back pain, fatigue, heart palpitation, breathless or difficulty breathing, headaches(most of the time in the morning), indigestion, Difficulty sleeping, increased appetite, mood swings, personality changes; sore throat, and what I hate the most of these side effects are: High blood pressure (hypertension,) weight gain, facial swelling, fat deposit, Fluid retention,and ACNE(back and chest)...

Can anyone please help me how to get rid of acne? what kind of exercise should I do to lose weight? Thanks...

(last CBC Dec.22,2010 platelet count is 18K)... Tomorrow will have another CBC..

I have all of the above except sore throat and hypertension, and honestly my BP HAS gone up but it's always been low, so now it's up into the "normal" range. However, I'm having blurry vision intermittently. Not so severe that I feel it's impaired, and it comes and goes, but my depth of what is visually sharp seems to be much narrower than it was. Also, add tremor.

I started at 60mg/day and am now down to 30mg/day and none of the side effects seem to have diminished proportionately to the dosage decrease.

The side effects can get worse during the taper. It can take a while after you stop Prednisone to feel normal again.

So. . . I am currently awaiting the results of the CBC that I got this morning.

I began this prednisone cycle at 60 mg, tapering down 10 mg every 5 days. I am currently planning (hopefully if the counts are good) to begin taking 10 mg today. I always get so nervous waiting for the "number".

Also, I seem to be experiencing some signs, mostly "oily skin" on the face and back. I find it strange that I did not experience this at the higher dosage of Prednisone, but now that I am down to 20 I am seeing it more.

Also... how have many of you coped with getting blood drawn constantly, and getting IV's in your arms? I HATE this part with a passion and it's upsetting knowing that I need to deal with this for the rest of my life.

You're jumping the gun a bit. You may not have to deal with this the rest of your life. I never thought I'd have a remission, but I'm on year 6 right now and have a break from ITP after dealing with it for 8 years. Many people have remissions and if they don't, they end up spreading out the CBC's to once a month or once every few months. It does get old, and people tend to drop back on the monitoring.

SO. . . I am so confused and frustrated.

I get my counts back yesterday. They are at 65,000. Down from 100,000 last week. The problem now is two fold. First, I was supposed to go down to 10 mg a day of Prednisone. Instead, the Doctor told me to go back up to 30 mg. (Now keep in mind, I've been under 10,000 counts before and I don't have any symptoms that are visible)

Second, I caught a virus from my wife... I know viral infections/or any infection cause a decrease in platelet counts, therefore, I cannot tell if the drop in counts is due to my viral infection, or the ITP itself?

I want to get down to lower dosages for Prednisone, but I was heartbroken to hear I need to be on 30 mg for another 5 days.