How far did you drop when tapering off Prednisone?

Hello everyone, I keep active on the Facebook page so much that I forget to come back here!

I am tapering off prednisone. Currently, I am at 20mg (my original dose was 60mg). Yesterday marked one month since I was diagnosed with ITP, it has been quite a struggle to say the least. Right now I'm in what I call the "steroid blues" as the low dose doesn't seem to lift my mood as much. I am also finding myself getting tired easily. I make a point to wake up early in the morning and take a walk just to try to fight gaining any more than the 12lbs I've put on in 4 weeks.

My question for everyone is how "bad" did it get when you finally came off prednisone? In one week on my 40mg to 30mg taper I dropped 40,000 platelets, so my immune system is still enjoying the destruction process. I am due for another CBC along with a bunch of other tests on Wednesday and I am dying to know what my count is now. So far I have been in the "safe" range but I know that might not be for much longer.

I haven't really read about anyone's final taper off prednisone so I wonder what to expect. Thank you in advance for any/all information. I feel a little more in control of my life when I hear how others are dealing with ITP.

Hello. Everyone is so different with their experiences that it would be impossible to predict where you will fit in. Platelet responses and withdrawal side effects vary a lot from person to person. If I tell you my experience, you might start looking for symptoms and maybe they will be worse because of it. A lot depends on how long a person has been on Prednisone and what doses they were on. I never felt happy or euphoric on Prednisone, so I didn't lose anything there with the lower doses. I did have depression at the end though.

I will say that getting up early to walk is great on two counts. One, you are trying to stay fit which will help with weight and muscle strength. Two, if you have the energy to get up early and do that, you are doing better than many people on Prednisone. Keep it up as long as possible.

I have a hard time on that Facebook page. There are a lot of people who seem to be misinformed and lost. The discussions frustrate me so I stay away.

I was diagnosed about 17 years ago with ITP with my platelet count at 104 at that time. When I visited my family physician, he referred me to a hematologist as there have been new treatments since I was first diagnosed. I had been averaging about a count of 60,000. The hematologist put me on prednisone for 16 months while doing other treatments to kick my overactive spleen into remission. I started on 60mg and slowly came down 10mg at a time until I got to, I think 20mg over the course of about 13 months. Then, I was reduced by 5mg until I was at 10mg and was slowly reduced by 2mg every couple of weeks. Like I said, I was on it for a total of 16 months.
I gained weight, gained a moon face, felt elation and lots of energy. My body loved prednisone and the aches in my knees went away and I was much more limber. I took Tamazipan which helped me to sleep, so all was good while I was on it with exception of the weight gain and moon face. Since I’ve been off at the end of March, I’ve felt mild depression at times and during the first and second month, felt so tired and sleepy. Instead of spending my time in the gym lifting weights on my lunch hour, I would crawl in my back seat in my car and take a nap. After the sleepies went away, during this third month, I feel like I have rheumatoid arthritis. When I first get up after sitting for an hour or two, I feel stiffness in my lower back and I have to hobble to work it out. The pain in my knees has returned with a vengeance and my stretching ability has diminished. When I lift weights and use heavier weights or do more reps, my muscles are sore as the lactic acid builds up. That’s the way I feel all over. I feel swollen, stiff and sore. I walk about an hour 4 times a week. I used to enjoy it, but now, I can’t wait to get home because I feel so stiff. Now, this week, I’m getting less sleep (can’t go to sleep and wake up earlier than my alarm) and am feeling more energy as if I were back on the prednisone.
In the past, my metabolism is such that I could lose easily by eating less or skipping a meal or two. I think the prednisone shut my metabolism off as no matter how much I tried, I could not lose a pound. Now, I’m starting to see a couple of pounds drop off, so I think my metabolism is kicking in again. But, while being on prednisone, I did not have an increase in my appetite.
In the end, all the prednisone and other treatments did not do any good. I felt frustrated that I was on the drug for so long with no lasting positive results in my platelet count. I think I’m probably back down to 60,000. The highest I got while being on prednisone and the other treatments was 143,000, but the count would always start dropping. The doc wanted to talk about taking my spleen out, but I stopped seeing her and tapered off the prednisone by myself and am going about business as usual.

Connie:

I can't believe that you were given Prednisone with a count of 60k to begin with. That count is well above treatment level and most would not treat at all with that count; monitoring would be sufficient.

The things that you are describing are typical after tapering from Prednisone. How long have you been off of it?

yes please find another doctor splenectomy shouldnt be your only option or last with meds like nplate and promacta now a days i regret having mine because you cant catch a simple cold or fever without going to your doctor right away

Hi, Sandi,

Yes, it's true. Started out on 60 mg for a month and then started dropping the dosage each month. Most of my high dosages, I stayed on for a month.
At the end of this month (June), it will be 3 months that I've been off of the prednisone.

I haven't heard of many (even a few) going into remission with any kind of treatment. I believe if I'm not bruising much and am not bleeding anywhere, I'm good. I lived with this for 17 years without doing anything, and I look at my treatments that I had and feel it was a waste of my time and money.

Some people do go into remission with treatments. Many here have. Years ago, I had a year and a half remission from Prednisone. I have also had remissions with Rituxan. I've been in remission for the past 8 years.

For me, I'd take a count of 60 and call it a remission. Find a haematologist who feels the same. The latest treatments aim for a count of 50 so your 60 is great.

Connie wrote: I believe if I'm not bruising much and am not bleeding anywhere, I'm good. I lived with this for 17 years without doing anything, and I look at my treatments that I had and feel it was a waste of my time and money.

Connie, after 5 years with this, I'm feeling more and more like that each day. I'm strongly thinking of telling my hema that I want to discontinue the pred and just take my chances with counts. I've been taking it for the last 9 months, and it's causing terrible gastritis. In my mind, that sets me up for a much higher chance of disastrous bleeding than if I merely had single-digit counts but healthy stomach mucous membranes.
I've been diagnosed with closed-angle glaucoma, and worry daily about what the pred is doing to my eye pressure.
If this weight gain sends my BP soaring, wouldn't that more dangerous than an infinitesimal chance of brain bleed? I just can't see that the answer for my personal verion of ITP is to take toxic agents that raise the number on the lab sheet but cause other more dangerous conditions in their wake.

I really would rather be left alone. The problem I'm having is my fear of cutting ties with Dr. Hema. If I do happen to have emergency bleeding in the future, I'd rather have someone familiar there to cover my back. The Dilemma, capital D.

Midwest,
I know what you mean. I told myself not to burn the bridge with my dr., but when I cancelled my appointment, her nurse called me to ask why. I told her I didn't want to pay the $20 copay just to convince the dr why I wanted to keep my spleen (that was the next plan after the rutixin failed). The nurse gave a little scoff laugh and said, "Okay."
Now if I need that dr in the future, I'll feel like I'm crawling back, but maybe I won't need any dr in the future.

Connie wrote: I haven't heard of many (even a few) going into remission with any kind of treatment.

We say those who have gone into remission quit coming here so we don't really know.

I call a remission decent/good, not necessarily normal, counts without treatment. I accomplished that through prednisone, can't remember 8 or 9 years of counts from about 85k-125k. Then a tetanus booster sent my count way down and in 2002 I had one Win-Rho IV and have had decent counts since so that's another 12 years I consider I've been in a "remission".

Sandi are you still taking prednisone? I was wondering what would happen to your count if you stopped it.

Midwest - you said "The problem I'm having is my fear of cutting ties with Dr. Hema. If I do happen to have emergency bleeding in the future, I'd rather have someone familiar there to cover my back." If you would have an emergency in the future then you would get a new doctor if you had cut ties with your old one - in an emergency you will see who is available, your hematologist may not be on call. I've had ITP since 1989 - didn't have a hematologist from 2004 until a couple years ago, we had changed to an HMO and my PCP didn't feel it necessary for me to see a hematologist & that if my count hit the skids then I'd be referred to one. Needed oral surgery and he wouldn't do it unless a hematologist told him it was ok, so I was referred to a wonderful hematologist.

Melinda:

Yes, I'm still taking it. I take 10 mg's a day unless inflammation is high, then I bump it up. It's possible that it's keeping my count up, but since my count has been in the 200's - 300's for many years, I doubt it's the Prednisone. 10 mg's would probably keep me around 40k or 50k.

Dear Connie

I know your post is 3 weeks ago but wanted to ask how you were doing as I was on prednisone started with 90 mg on the 11th March and then tappered to 60mg on the 26th March and finally off them on the 3rd June, whilst tappering off them I didnt really have to many side effects, however I have started now with what I feel are side effects but not sure so it would be interesting to hear someone who has had side effets. I have been off them for 3 weeks now, and my platlets dropped a bit at first then went up and now dropped again so sitting at 128 after a bloodtest this week.
But I have aches and pains in my body, in my muscles and joints, I am tired and weak, so much so when I straighten my hair its exhausting to lift my arms for so long.
I also started with bad diarrhea for about 3 weeks just before I finished the dosage, but that has stopped but I feel my stomach is still not back to normal. I have lots of tears at the moment and feeling of anxiety and really tense. Such a difference from when I was on steroids - actually enjoyed being on them - they gave me a feeling of happiness and almost euphoria.
When I asked the doctors about side effects they said its probably out of your system already, and shouldnt cause withdrawls now 3 weeks later. I still have the moon face.

So just wanted to check do you think this is side effects does it sound like yours and how long did yours last?

Prednisone most certainly will cause withdrawal three weeks after stopping the drug. That can last for weeks or months and are the exact side effects that you described. That doctor is wrong.

Fiona

I have been on prednisone many times and I am always left with what you describe.....joint and muscle pain, fatigue, hard to do daily activities for a long time...even if I taper very slowly. Like Sandi said your doctor is wrong. Many times on here we have discussed that doctors should have to take prednisone and then they would not be so quick to dismiss our symptoms.

That is why a forum and chatting is so good as REAL people can give you advice and how they feel.
Unless the doctors have had ITP or been on steroids how do they know, its just what they read/study to be honest or what they have seen in some patients. When I told my Doctor I had Diarrhea for 4 weeks and could it be the steroids, she was so sure it was not them. She told me prednisone will be out of your system now. But its good to know I am not going crazy and it is side effects!
:silly:

As you probably know, when you take steroids the body stops making its own steroid and then when you stop the tablets the body (adrenals) has to start up production again and that can take time. When it fails to make enough steroid it's called adrenal insufficiency with the exact symptoms you describe. If it lasts a long time then it needs attention. You may have tapered too fast and the body needs time to adjust. If it were me and it lasted much longer I'd see the GP and get some advice.

It took me a good two or three months to get back to normal after stopping steroids. I was so exhausted I could barely sit up in my chair at work and I had horrible jello legs. It takes a long time for Prednisone to clear from the body. Doctors should know that.

I have not heard of diarrhea though as a side effect of steroids. In all my years here, no one has ever mentioned that. I suppose it's possible, but certainly not common.