prednisone witbdrawal?

hello everyone new to the site I was diagnosed with ITP IN january at the ER with a count of 4,000 was auickly admitted went through IVIG and a platelet transfusion ontop of that ofcourse was started on 60 mg of prednisone I had many side effects throughout the 4-5 month treatment I have been off prednisone for a week now and starting to really terrible bodyaches headaches COMPLETY EXHAUSTED and the most concerning one for me now is I feel faint I tapered slowly and so I dont know why I would get these side effects I don't know if its due to prenisone may e going through a withdrawal I just dont know so any advice would be greatly appreciated .

Those are typical Prednisone withdrawal symptoms. Tapering slowly does make it easier, but the hardest part is at the end of the taper. Many times, the end is done too quickly and people taper from 10 mg's to nothing or go from 5 mg's too nothing too quickly. The body produces approximately 7.5 mg's of cortisol daily, so anything below that needs to be slow so that the adrenal glands will begin functioning on their own. It can take a few weeks (or months) to feel normal again after stopping Prednisone, especially if you were on it for a few months.

Did your counts hold up?

Thanks soooo much for the information I really appreciate it my hemotologist just keeps saying it's not because of the prednisone so now because I'm still having these headaches just all around feeling like crap still after a month of being off pred she is sending me to a neurologist as for my platelets it's been up and down lowest being 70,000 hoping everything goes back to normal soon

One way to find out if its prednisone withdrawl is to take a pinch of pred say 2.5mg and see if it makes you feel better.

When I was tapering earlier this year I was at 7.5mg. One day I accidently took only 3.5mg. omg It really knocked me down. I had body aches, and such fatigue that I could barely walk, could not drive safely. I thought I had the flu. It wasn't until the next day that I realized I hadn't taken enough pred. When I took my full dosage the fatigue quickly went away. good luck

Many Hemo's are not quite as familiar with the side effects as you'd think. At the time you first wrote, you'd only been off of it for a week after being on it for 4 - 5 months. I stick by my thought - it's the withdrawal of Prednisone. I've been there and that's exactly how I felt for weeks after stopping the drug.

Thanks for replying yeah I would try your theory I just dont even.want to put myself in that position again I hate prednisone and would never ever.take it again unless absolutely necessary I can definitely.relate to.you though one day without prednisne is complete misery!

I see my.hemo is clueless you would think they knew more about it then we did but that's not the case for me I agree with you I def think its because of the prednisone its a terrible feeling I wonder when I'm.going.to.get back to normal ??? also now I have swollen lymph nodes I e never had that before ughhh when is this crazziness going to stop

I agree with Sandi. Seems like many doctors taper people quickly. And their patients aren't told what to look for as signals they are tapering too fast. I've had 2 awesome hemos but no one has ever explained to me the signs of adrenal insufficiency. I had to figure it out myself from experience. :huh:

(my suggestion of taking a bit of prednisone is probably not the best- my apologies. I mean who would want to take it again after you're off of it?! I'm not a doctor or pharmacist. And if you were going to take a bit more, it would be something to do right away the first week.)

here is a quote from a med site that might be helpful to those coming off prednisone:

Steroid medications called glucocorticoids (such as prednisone, hydrocortisone, and dexamethasone) are similar to the natural hormone, cortisol, which is produced by the adrenal glands. They are used to treat a variety of conditions, including many inflammatory diseases such as asthma and some forms of arthritis.

Glucocorticoids can slow down the production of adrenal hormones by acting on the pituitary gland, the master gland that controls the adrenal glands.

If glucocorticoids are stopped or decreased too quickly, the adrenal glands may not begin making cortisol again fast enough to meet the body's needs. Adrenal insufficiency may result.
Symptoms may include:

* Decreased ability to respond to emotional or physical stress
* Fatigue
* Joint pains (arthralgias)
* Low blood pressure (hypotension), which may cause light-headedness or fainting when you stand after sitting or lying down
* Muscle pains (myalgias)
* Nausea and vomiting
* Shock
* Weakness


ps. I would add depression, headache, sweating to the list.

Woww thankyou sooo much for the information it was extremely helpful ! I have had all.those symptoms every single one the thing that gets me is I did taper down slowly and still got all these symptoms now what do.I.do just give my body more time or is this something life threatning.and is it.something that needs to.be.adressed? As soon as possible?

It's not life threatening. Adrenal shock is life threatening, but you'd have known long before now. Death is the result and it usually happens within a day or two after stopping cold turkey. You might have adrenal insufficiency and it just takes time to get the adrenals working again. People can still have withdrawal from a slow taper. Most of us here have had it and I agree, it's horrible. It can last a few weeks or months after stopping the drug. I felt so weak and exhausted that I could barely sit at my desk at work. My legs would shake when I walked. It does get better.

Swollen lymph nodes are not a symptom of the taper. You could have an infection but if it doesn't go away, I'd tell your Hemo.

While swollen lymph nodes are not a symptom of a taper, they can show up when you are tapering - in my situation, I have chronically swollen lymph nodes. They go away when I'm on prednisone so they come back when I taper.

My taper was really bad and it took 2-3 months after being off prednisone until I felt ok.
Erica

Thank you all for your information it has helped me calm down I still feel horrible headaches can be unbearable at times I just hope everything returns to normal including my platelets this has been an emotional roller coaster still is

I'm in the process of stepping down my prednisone.

Went from 80mg to 50mg fine, no problems.

Just dropped from 50mg to 25mg and wow.. Fatigue has hit me hard, just get wave after wave.

Not looking forward to my next drop which 25mg to 10mg.

However I can't wait to get off it. This time round I have been hit hard by acne, its like being a teenager all over again lol.

THAT is one heck of a fast taper. I would feel absolutely horrible. What's the rush other than acne?

Its not me its my Hemo lol.

Not sure if my hitting 139 got her a little worried. I don't think she expected me to hit that high of a number.

You could ask her to slow it down. Not only do you risk withdrawal, you could have a platelet crash. 139k is a great count, but some people would hit the 300's after a dose like that. It would be a shame to go through all of that for nothing.

Hi

I am now 20, had ITP for 10 years and was told I was offically in remission 4 years ago - Yes it can happen - one day you might just gradually improve

In terms of prednisone -my Sydney, Australian blood disorder specialist told me in my final year or so with it that they have stopped prescribing and using it a lot with ITP (even with it's very quick platelet raising abilities) because the platelets usually come down just as quick and the effects are shocking. I was surprised by this and I think that's an important realisation for doctors.

I was hyper and a pain to be around- talking like a rocket, more aggressive, the wrong 'colour' very puffy, I gained a lot of weight very quickly and I craved everything particularly wheat and yeast. I slept badly, I was SO exhausted and yes it was a dodgy rollercoaster.

But anyway you've had it now and I hope you will see improvements but I think it is wise and was with further operations to still question the doctors choices because ultimately it is your body and ultimately they still know not so much about aspects of the illness. I am very glad for example I hesitated with the splenectomy because now I am well my quality of life would have been reduced and i would have had another hindrance to my full capacity of health if i had undertaken it. In saying this of course sometimes the decisions are necessary and work for many- also a lot of the time alternatives left are few and these doctors are clearly more intelligent than us.

All i am saying is listen to your body. diet and exercise i believe helped turn me around surprisingly and same with alternative practises. Stress relief and the blood well/immune restore herbs (which are used for ITP famously).

Best of luck

I am on my final leg of tapering off.

I am down to 5mg per day for the next 5 days and then 5mg on every alternate day for another 5 days.

When I went from 50mg to 25mg and then 25mg to 10mg the initial few days were bad, I was so tired it was crazy but then went back to normal.

That's a fast taper!