Prednisolone withdrawal side effects

Hello Jill, remember to let your doctor know. If you need to, keep a record of your progress.

All the best.

Many thanks - I will try my best! 

Hi Ann

Yes, I'm afraid that I experienced what you are going through as well - it takes a long time once you drop to another level and I think that is normal.  But there doesn't seem to be anything you can do other than just drop as slowly as possible.

My GP prescribed Ibuprofen for the pain and this does help.

 

First time I took Prednislone statting 30mg for three weeks then down to 25, 20, 15, 10, 50, 0 per week on docs orders now realising that the taper should have been much slower ... it took three months before I started to feel "normal" again. Sadly my UC flared again three months later. So back on 30 for a week, same taper, but got down to 5 and symptoms came back. So back to 30 and same taper. This time the symptoms have not returned and I have been drug free for four weeks but experiencing all the symptoms that you and others describe. Overwhelming tiredness and aching body. Although I feel weak I am trying to get out and exercise as much as I can as I do find this helps. Like you, my knees feel painful and seem to seize very easily, not something I have ever experienced before but I feel that keeping them flexible is important.

Do you really mean from 7 to 5mg? That is NOT a slow reduction - any drop should be max 10% of the current dose to reduce the risks of steroid withdrawal pain and slow needs to start below 10mg if you have been on pred for any length of time. Once you are at that stage your body is about to have to start making its own steroid, cortisol, again. Above about 8mg (it varies) the body has no need to make more, the pred is enough, but then the adrenal glands and the entire feedback system that governs production has to wake up and set settled again - and that is said to take a month for every month you have been on pred, it goes on even after you have finished taking pred altogether.

Because of the changing dose while you are still on pred it is more difficult - so staying at a new dose for a months at least gives your body a bit more time to catch up. One of the first signs of poor adrenal function is excessive fatigue - which can make the fatigue of autoimmune disorders look an absolute doddle! The best way to avoid it is to reduce 1/2mg at a time once you get below 10mg, 1mg absolute maximum. And stabilise each time before starting on the next stretch. If you feel OK a couple of weeks after dropping 1mg then you can drop another - but if you don't feel good, wait a bit longer.

 

Your adrenal glands naturally release steroid....when we take steroid, our adrenal glands become lazy, and work very little.

When we pull back on taking steroids, our adrenal must get back to carrying the load on their own...and sometimes it is difficult to wake them up...so the short answer is, yes.

A drop from 7 to 5 is a massive drop. Adrenal glands need to be nudged...maybe 7 to 6.5 or 6...most of use run into difficulties in the 10 to 5 range. Small drop, weight for the balance, small drop, wait for the balance.

I encourage you to go back to the beginning of this thread...it is one of the best threads I have ever read about steroid withdrawal.

Perhaps print out the thread and share it with your physician

I do a steroid burst....higg, fast on...decrease daily...off.

Example:

Day 1 50 mg

Day 2 45 mg

Day 3 40 mg

Day 4 35 mg

Day 5 30 mg

Day 6 25 mg

Day 7 20 mg

Day 8 15 mg

Day 9 10 mg

Day 10 5 mg

Day 112.5 mg

Day 12off

Sometimes I think we flare as a response to reduced adrenal gland output as opposed to disease activity.

That is very interesting as my third time of having to use Prednisolone (I was diagnosed wih UC just over a year ago) my symptoms stopped after just two days back on 30mg but my consultant still said I should continue taking the drug on a six week taper dropping 5mg a week. I'm now wondering that had I done this burst, I wouldn't be feeling as rough as I do now. This is such a useful thread. I was very worried about why I felt so poorly when all my blood work is fine and it has helped put my mind at rest. Next time this horrid illness flares I'll now better how to manage my meds.

 

Thank you so much for your post. I have left a message for my respiratory specialist nurse to call me tomorrow. I think after all your comments which I am so grateful for I would like a blood test to check my levels. I have one before each reduction so think one now would be good. It's strange you take steroids as they help so many conditions. Totally different story reducing. Will let you know the outcome. So good having you all good luck. 

Cjb, I don't wish having to use prednisolone on anyone.

I've been using it for asthma and now sarcoidosis and asthma for 35 years. I can't imagine that with all that use for so long, I haven't suffered damage because of it.

Prednisolone is a life saving drug. No other drug is as effective as prednisolone for it's anti-inflamatory properties. But, prednisolone comes with a huge sting in it's tail.

The side effects, especially after long term use are devestating. Some of these are permanent. Thin papery skin, fragile bones and eventual blindness. I have now suffered eye damage due to heavy use these past two to three years along with the previous use since 1982.

Unfortunately, there is nothing else that can be substituted for it. Other drugs are not as effective and just as devastating on the body.

You get an idea of how important to human health prednisolone is, when WHO lists it as one of the essential medications in a basic health system. It is now 61 years old and has yet to be replaced with anything else. 

Patient discussions allow us to learn so much from one another...thank you

you are very welcome...hugs

I am sorry for your suffering and regret even more that the medication used to minimize your symptoms has caused yet other health issues. hugs

Thank you, I feel the same way for you and everyone else who suffers from chronic disease and having to use medications that both relieves and destroys the body at the same time.

My chest is tight and painful to breathe with every breath, but I just cannot imagine what it is like to suffer from eczema, urticaria and other chronic skin inflammation. The constant painful itching must be a living hell.

There is such a thing as sarcoidosis of the skin, again chronic painful itching, but includes disfigurement and even bone damage. I have to be thankful I don't have this.

I wish you all the best and sincerely hope you stay as well as you can .

I wish you good health and no more steroid need...hugs

Hi there, I have been diagnosed with crohns and have been on prednisolone.  at the moment down to 25mg but have had some serious side effects, almost like an allergy to this drug.  only been on it for 2months and I have blown up overnight with odema like symptoms.  I look bee stung over my face and neck and I cant turn my neck.  I look like i have a camel hump on back of my neck.  is this an allergy to prednisolone?  Am i at my body's saturated level of prednisolone?  the swelling is very painful and the odema on the rest of my body has increased by 10.5kg in 1 day.  HELP!!  Could I possibly try to do this burst and drop 5mg each day to lessen the dose?  cant contact my specialist doctor and our regular doctors are of no help here.  any advise would be great

Hi Dianne

the key to Prednisone is once you have reached the level that helps you (I have Chronic Urticaria) my doctor has me stay on it for couple of weeks then she has had me go down 1mg at a time for a couple weeks then go down another 1mg very slowly as not to shock your body. So from 25 mg if it is helping you....after a couple of weeks start to go down to 24mg...if all goes well in two weeks then down to 23mg and so on.  She prescribes a large quantity of 1mgs and some 5mg.  The slower you go down the less side effects.  I am currently down to 3mg and an Allegra each day.  I know we have different issues but this is what gas helped me.  With Urticaria if you go off too fast and stop....the hives will come back.

please let us know how you are doing.  Hang in there!

Wendy

Dianne

my blog should have read has not gas.....it would not let me correct