SIDE EFFECTS COMING OFF PREDNISONE

HELP!!!

I have been on prednisone for 3 years and my new Hemo (god bless him) is giving me IVIG and slowly tapering me off the prednisone..
I have been doing well with the IVIG, every 3-4 weeks and counts go up as high as 300...
Anyways everytime I get the transfusion he lowers my dosage by 5mg. I am currently at 25mg.
The side effects I am experiencing are: extreme fatigue, anxiety, depression, light headed, dizzy....
Just want to hear about side effects from others and how they are dealing with it...

Thanks!!

Hi ashna, I had all these side effects and it does get better, not a lot you can do about it, have a rest when you can and just try to hang in there. The good part is that you will be off them soon and can look forward to getting back to normal. Your body is just trying to cope on it's own with the lower dose of pred.

He may be able to give you something for the depression for a short term, I found this the worst part crying over nothing all the time.

Good luck, things will get better!

Ashna:

I would suggest coming down slower. Prednisone comes in 1 mg pills. Try going down 1 mg every three to four weeks. Things will be much easier. At this point, is it worth the rush?

For me, I would take a different approach. If I knew what I was experiencing was side effects of pred tapering, I would rather taper a little bit faster (not dangerous, just a safe faster) in order to get off it sooner. When I had awful symptoms from tapering, the worst part about it for me was the fear that it was more lupus problems emerging (like muscle pain) and not something temporary.

I can totally see different people taking each different approach.
Erica

I was unable to function at all coming off of it, even at 1 mg a month. It was like having Addison's...total body shut down. I'm not sure how much of it was Lupus either, but I decided it was torture and gave up.

For me, what Sandi suggests (slower) worked better -- but the key point is to decide for yourself whether you want to go fast or slow. There is no perfect answer that works for everyone. If you are tolerating it, go faster, as Erica suggests. If not, you might consider slowing down, although that does prolong the fun. Just know that the taper is -- by far -- the worst part of steroids.

I deal with tapers by turning them into an opportunity to get new toys. Here's how it works. Sit up on your bed, get your eyes all glassy looking, and when your parent/spouse/sibling/SO/care giver comes into the room, raise your eyes to look at them (don't raise your head), growl a little, and then in a low voice say "NEW TV NOW." Works every time.

Hi there
Am tapering prednisolone at the moment and though not been on them as long as you have:)

I have moments of feeling quite sick and have learned if I eat then the sickness goes away and luckily it does not matter what I eat, so I can stick to healthy food. I am learning to carry around some chopped (washed) raw carrot and tomotoes and crunch on them and so far has worked.

A few month ago when last on prednisolone I have the tinest of dizzy spell which vanished as soon as started but completely different to the vertigo which had in the past so yes I have experienced that too briefly.

As to the tiredness and depression. Tiredness can be helped by eating little and often, making sure you don't go 3 or 4 hours without food. Again it can be healthy like veg and fruit. I found this out when a friend diagnosed with non hodgkins and that website recommended eating little and often to get through the day. Resting when you need to rest and just don't over do it for now by pushing yourself for others...

Depression - seperately I have very mild Seasonal Affective Dissorder - SAD, very mild. so yes I feel low at times and involved with a local mental health organisation MIND, which helps me to remember to look after myself etc.(far better than prozac which one GP wanted me to take seasonally which I can't have anyways as it says do not take if got history of bleeding dissorders - he clearly hadn't read my notes before issuing. having read the leaflet I binned the prozac and for a few reasons swapped GP surgeries) Balanced diet. Enough fresh air and sunlight without burning. Doing something you enjoy every day and finding a way to let of steam/chuntering about things so it don't 'eat' at you. Plan something for the future too that you like doing so you have something to look forward to - a goal. Like a holiday or a more expensive item of clothing that you wouldn't normally buy but would love to but would seriously have to save for.... yep it gives a purpose which helps us to look forward rather than dwell on what we fail at and feel low.

hope this helps:)

I have to taper slowly, not sure if it is because of the Lupus. My hematologist would taper me at a fast rate of speed and within 3 months of tapering my platelets would drop tremendously. My rheumatologist then felt that I need to taper slowly drop 1 mg every 3 months. I was fine until we got to 3 mgs and that is when I crashed and burned. SOOOO I am back up to 10 mgs and I get to start the process all over again. All of this back and forth with the pred has made me irritable, emotional, etc... I truly do not feel like my "old" self... wish I could remember that girl... *sighing*

Hope you get some relief soon. BTW, I have been on prednisone for 3 years too. It really kind of sucks. I am scared that prednisone is my only answer these days.

Kasha - I've been on it for 7 years because of Lupus. I've accepted the fact that I'll never be off of it. I'm okay with that, considering how I feel when I try to taper. It's impossible, even going down 1 mg at a time. I now consider Prednisone one of my best friends. Never thought I'd say that!

My first Prednisone taper started at 60mg, 40, 20, 10, 5. Other times I have been on lower doses of Prednisone the taper was less each time. I also had the same side effects. I say if you can handle the faster taper do it. The quicker you can taper off the better. Depression is the only side effect that is still haunting me. Currently on 10mg of Celexa for Depression.
A friend has been on Pred for 20+ years and it really showes.

Side effects of Prednisone are terrible. I feel for you as I just went through tapering off 80mgs a few months ago. Hang in there and hopefully it will be over soon!!!

My ITP was in remission for 4 plus years after Rituxan and prednisone. I just had a relapse a few weeks ago. I've been back on prednisone for only 2 weeks, tapering now. I had forgotten how bad it is coming off of prednisone. I am exhausted and just feel like crying all the time. My best advice is too ask people to help you out if you can, eat healthy and small meals like other people have suggested, and rest whenever you can.

Dru - How much pred were you taking, and how are they tapering? I've been on 60 mg for the last 2 weeks, and just started tapering yesterday. This is my first round, so I'm not sure what to expect.

I seem to be very sensitive to it (my count was up to 600 3 days ago - was 91 when I left the hospital 10 days ago.)

So far today, extremely fatigued (flu-like), slight headache, slight dizziness, nothing too major. Mostly just wish I had my energy back and didn't cry at every little thing. Seems I don't know from one day to the next how I'm gonna feel, so I'm just chugging along hoping the cashier in the grocery store doesn't look at me wrong and make me cry

Hi Kimm what you feel is pretty normal, but be prepared as this really won't change much until your dose is low.

You do seem pretty sensitive to prednisone so hopefully you will get of it soon. Maybe if you need to do this again a smaller dose would be enough and then you wouldn't feel so bad.

The crying part is pretty awful though. I know how hard this is I cried for six months. I had to take an extended leave from work, I work with the public and I cried if someone was awful to me and I cried if someone was nice to me(go figure) I just was miserable, hardest thing I have ever did.

My advice to you is if feel like having a bit of a rant, jump on here and do it, we have all been there and know how bad you feel sometimes. Just hang in there and remember it's the pred not you.

My platelets were at 7,000 when I was put on 30 mg prednisone June 1. Five days later they were at 302,000 and my hematologist put me down to 20mg for 3 days and now I am on 10mg. I go back for a check on Tues June 14. I'm wondering if the taper is too fast so I will talk to the doc about it. I am really tired and did nothing but rest yesterday. I'm hoping to be able to go to work tomorrow, but not sure if I can muster the energy for it.

this is my third time on prednisone since in the past 11 years. I have both hemalytic anemia and ITP. I think I forgot how bad the prednisone side effects are.

Hi dru, seems fast to me but I am starting to think I was really slow. I started on 75mg in Feb last year and started to taper after about one month on 75mg, all up the taper took 7 months it was a nightmare, but from what I read on here I am now thinking that I was way too long.

How are your counts holding up?

Milly,
My hematologist always tries to taper quickly, maybe it is too fast. I will get counts tomorrow and will talk to her about it. She always makes me feel like part of the treatment planning process. In the past I have responded well to prednisone but have never gotten a lasting remission. I am attempting to go to work today, hope I can make it through!

So did you have a lasting remission from tapering that slowly? 75mg seems like a high dose!

Dru, 75mg was high but I had a count of 2k and was bleeding really badly, I was on blood transfusions for two days and it was they where putting the blood in and it was coming out just as quickly, I was very scared that I would not make it.

I didn't go to work much when I was on pred, I was a real mess.

I am at my 7 month now with no treatment, how long will it last who knows. My highest counts on pred was 130 to 140.

It is good that Dr lets you take part in deciding on your treatment, my Dr is like that too.

Best of luck with going to work, I know hard it is.

I was just on a silly website about the side effects of prednisone. They said 10% of patients experience emotional side effects. OK. Since we are all sitting here, I will do a little survey. Everyone who has been on prednisone, raise your hand.

Uhuh, looks like a big crowd!

Now everyone who has NOT experienced emotional side effects, put your hands down. Remember even that really nice euphoric feeling you had is a side effect.

Yep, most of you still have your hands up! Looks like more than 10% to me!
(Of course this isn't a scientific poll!)

Emotional? Nah!

I cried about everything. I had to sneak into the rest room at work several times a day, just to cry and let the emotions out. I was angry all the time too, but did manage to bite my tongue at work and around my kids. I thought I would explode sometimes. I hid out in my bedroom in the evenings when I could and would let my kids in one at a time, because I couldn't handle them "en masse".

I backed into a car in a parking lot, drove over a huge puddle in a parking lot and splashed a family, made a fool of myself in 7-11 when I spilled a drink, stuttered and shook constantly at work, the list goes on. I was barely functional and struggled to get through each day. It is a horrible drug in high doses and I think that 90% experience emotional side effects, not 10.

I was a blubbering mess the first time I came off Prednisone! I was really depressed because of the weight gain and the moon face. My dr put me on Celexa, but for some reason, each time I started, I got really sick so I haven't been able to take it. I had always been thin until I took Prednisone and I have never been able to regain my figure. (I was in my 20s at the time.) If I had known at that time that Prednisone caused weight gain, I would have been more careful. I didn't overeat or anything, but I did not eat healthy either. This time around, I've been very careful, but I've still gotten a little bit of the moon face and more inches on my abdomen. I think being more aware this time is helping me keep my sanity, but I'm constantly having thoughts of what I can do to lose weight. (I need to lose.) I wish my thoughts were accompanied by success of following through, but my fatigue always seems to win. (Or maybe I'm really using fatigue as an excuse, who knows!)

Hi everyone. this is my first time talking on here but i've been reading since i was diagnosed about 5 years ago.

i will save you the entire story and history of my ITP but i am 23 years old and just completely came off prednisone about a month ago.

i was on it for about 9 months all together and started at 60 mg/day.
i thought once i was completely tapered off i would feel better, but now i feel HORRIBLE. i've never been depressed before but i can't shake these feelings and i just cry all the time and feel hopeless. this didn't even start until a couple of weeks ago. i have had a lot of changes in my life. just graduated college and now living with my parents again. i think the prednisone is just magnifying all the emotions i'm going through right now.

thankfully, my moon face is gone and i have lost most of the weight thanks to the depression and loss of my appetite.

do you think that after a month of being completely off i could STILL be feeling emotional side effects or am i really depressed?

Alison,
Besides, coming off of the prednisone, you also have 2 additional stresses that can contribute and add onto your 42kv depression. Moving and life status changes are big causes of depression. Make sure you deal with those issues also

milly wrote: The crying part is pretty awful though. I know how hard this is I cried for six months. I had to take an extended leave from work, I work with the public and I cried if someone was awful to me and I cried if someone was nice to me(go figure) I just was miserable, hardest thing I have ever did.
.

I cried for several months also, I could not stand it. My thought was, I am not supposed to cry for no reason or at things that never used to bring me to tears. If I was watching a TV show and someone started crying, so would I. I would call my wife from work and cry everytime. When we went to bed I would cry for no reason. I do not miss that at all!!!
I do believe that major life stressors trigger Depression and possibly ITP.
So Alison, Please Do Not ignore the Depression.

Hi Alison,

I think that for sure that the prednisone could be affecting you. It's known to cause depression when tapered and it affects your body long after you stop it. However, as someone who's predisposed to depression, I think it might be worth your while to see your doctor and maybe even consider an antidepressant. It might be hard to come out of the depression on your own. Many of the posters here have taken antidepressants and other drugs to help with the side effects of prednisone. It's really a tough drug to take.

Hope your feeling better soon, and let us know how you get on.

Lily

Alison, I think absolutely it could be from the prednisone, as well as the other stressors in your life.

For me the side effects, depression and problems with sleep, muscles aches, last long after I go off prednisone. You should get some help by talking to your doctor. And remember, if you are reluctant to go on to medication (which works great for some people), there are other options that have been found to help depression; cognitive behavioral therapy, and exercise. Your doctor can help you pick a treatment option that helps you.