Hi, I'm a new member and wonder if anyone can give me some info about the side effects of withdrawing prednsiolone at the lower doses. I have a lung condition called crytogenic organising pneumonia and have been on Prednisolone for a year now gradually reducing from 40 mg this time last year to 3 mg now. The reduction had been quite rapid without too many side effects until I got to about 10 mg and then I started to get really bad muscle aches and also stiffness although it started out on the right side only, I also get neuropathic pain on that side because of a trapped nerve so sometimes its difficult to distinguish between the two. The plan is to try and reduce them and stop by the end of December. Reading the other posts, I realise that I've got away lightly compared to some people. What I really wanted to ask is if it's normal to have pain in different areas on different days, i.e., sometimes I've got pains in my knees, sometimes my upper legs, sometimes my lower legs and so on? Its started now to come on in my arms as well. Do you reckon this is due to the steroid reduction or something else? I've also heard that the withdrawal symptoms can continue for several months after stopping the steroids completely? Anyway, thanks for any ideas x
Hi Jill I have been on varying amounts of steroids for 5 years. I have been on 40mg for three Years I am now down to 5mg this has been the worse so far. Bad aches and stiffness fatigue no energy and depression. I go to 4 early January the aim is to be off completely by Christmas 2017. I am on them for chronic brittle asthma. I hope this helps
Predisolone (corticosteriods) take over the natural function of the adrenal glands and it seems to take a long time for them to get back to normal once the drug is withdrawn. Lots of information on the net about this. Search on adrenal insufficiency. I have to take Predisolone for short periods to control ulcerative colitis and it takes weeks to get back to normal after the drug has been tapered off and the symptoms you describe sounds very familiar.
As you reduce pred you may experience something called steroid withdrawal rheumatism - does what it says on the tin! You get all achey and stiff etc. The slower you reduce the less likely it is to happen and over on another forum many of us use this approach which is approved by doctors:
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
If you are on 3mg now I think to get to zero by the new Year is a bit optimisitc. But you have to try and see what happens. At these levels your adrenal glands have to start producing cortisol again - and that is probably the biggest hurdle. It will account for any fatigue you may have. That is what takes up to a year to recover even once you are at zero pred.
However - the "wandering" pains isn't something I have come across before with pred reduction. But I'd hesitate to suggest what I usually would - because you don't have the autoimmune illness I have that could turn to arthritis. Think you should maybe speak to your GP about that - because it could be something different that has been masked by the pred until you have got down to this low dose.
It seems consistently to be about the 5-10 mg point that the going becomes tougher
Once I made it to 5 mg, my physician said that I had done well and that 5 mg was good. I went home, considered the options and decided to go off completely, quietly on my own...my own because I wanted to avoid the pressure of answering all of the questions.
I stuck at 5 mg until my body quieted, perhaps 6 months Went to alternate days of 5 mg & 2.5 mg. Stabilized, reduced to 2.5 mg daily. Stabilized, went to 2.5 mg & 1.25. Stabilized, went to 1.25 mg daily. Stabilized, went to 1.25 mg every other day. It was hard work and determination but I sure enjoyed announcing, I am off!
Hi Ann Thanks for your reply. I hope you manage to get off the steroids in time. I had no idea they were such a difficult drug to reduce.
Thanks, Eileen, that's really helpful and it is so good to realise that the pains I am feeling are real and I'm not going mad! I had no idea that it was so difficult to come off these things and also what nasty side effects they have. A real 'Catch 22' - you can't live without them to start with but you can't easily get off them in the long run. I will certainly try the reduction system that you explained
Many thanks for that, I really glad to managed to get off them eventually - but what an ordeal!
Hello Jill,
The thing to remember about withdrawal or "tapering off" prednisolone, is not the amount in milligrams that you are changing, but the rate of change as a percentage of the dose you are coming down from.
For example, if you are dropping the dose from 40mg to 35mg. that is a drop of 5mg in terms of mass, but, it is only a 12.5% change from 40 to 35mg.
When you are down on the lower doses though, it is a completely different picture.
If you were on 10mg and you made the drop down to 5mg without any intermediate amount, it is still only 5mg of mass, but as a percentage, it is a drop of 50%.
As you can see, that is a huge change in dose, irrespective of the actual mass in milligrams.
Your body doesn't like shocks and will respond accordingly, risking the prospect of your condition flaring again, along with all other manner of symptoms.
This tapering off and the resultant pain in your joints, [nausea, tiredness, constant fatigue, frequent urinating]* are all "normal" withdrawal reactions.
[]* these are the other reactions I had to endure
Your body is suddenly exposed to the lack of the anti-inflamatory action of the prednisolone, with nothing taking it's place. Hence, any other conditions you may have like arthritis, you are now feeling the full force of unrestrained pain.
This phenomenon will continue, all the way down to the lowest possible doses of prednisolone. Bear in mind, if you are on 5mg, you may only be able to go down to 4mg, then 3.5mg, then 3mg, then 2,5mg, etc. You can't just drop from 5mg, to 2.5mg, that is a 50% drop. Far too much.
The higher dose and length of time you are on it, the longer it takes to recover from the symptoms.
Other symptoms include:
Fluid retention whilst on the high doses, this will drain away quickly once withdrawal commences.
Appetite loss.
Muddled though processes.
Foliculitis and acne, this took months to recover from.
Cortisol levels..... A steroid produced by your body, it ceases production whilst your're on prednisolone and takes weeks, sometimes months to recover normal levels again. This depends on how much prednisolone you were taking and the length of time you were on it.
It has taken me, until a couple of weeks ago for the fatigue to disappear after I stopped taking prednisolone in November 2015. I was on two courses of large doses in 2014 and 2015, for sarcoidosis. Recovery took about a year.
After all of this, I have now developed a sensitivity to prednisolone, unlike opiates where you develop desensitivity.
That does not mean however, that I can get away with less dose for the same effect, all it means is, the side effects are just as bad at low doses as they are at high doses. I am taking prednisolone eye drops to treat uveitis, I am suffering all of the above symptoms even at the tiny amounts of prednisolne in the drops.
One last thing, my optometrist has now seen signs of optic nerve damage in both eyes and cataracs forming on the left eye. Prednisolone is responsible for that.
I wanted to write to say thank you for this explanation. I had not thought about it in these terms - the percentage drop. It may well explain why when taking Prednisolone during my last UC flare all seemed well until I dropped from 10mg to 5mg and the symptoms returned immediately. It would seem my body just didn't cope with that 50% drop in dosage. I'm feeling ok at the moment but if and when this flares again I'll ask for some 1mg tabs rather than the 5mg so I can do the last stages of the taper gradually. Thank you again.
Top US experts some years ago said a pred reduction after longer term use of pred (more than a short taper) should never be more than 10% of the current dose. By 5mg that means not more than 1/2mg. Below it gets even more difficult!
But you don't have to take the same dose every day and it is possible to smooth a reduction by spreading it over a few days (or even more). I cannot cut my tablets so 1mg is the smallest option. I take the new dose for one day, the old for 4 days, new dose 1 day, old dose for 3 days and so on down to alternate days old/new. Then I increase the number of days of the new dose until I get to 1 day old dose, 4 days new - they I reckon I can fly every day new dose.
It sounds slow perhaps - but it isn't slow if it works.
Thank you for this. This along with zss's post makes perfect sense to me and I'm now feeling rather annoyed with my GI consultant for not mentioning this. He tells me to go 30, 25, 20 ... down to 5 then zero the following week. When I tell him how awful I feel (aching joints, limbs and tiredness mainly) he just pulls up charts of my C-RP, ESR and iron levels and says these are ok. He has never mentioned what you and zss are describing. I have a pill cutter so I reckon I could cut 1mg into halves next time and taper more gradually over a longer period.
but so worth it!
you go, girl!
To be honest - if they haven't done it themselves they probably won't really realise how bad it can be. And a certain generation of doctors grew up with the new wonder: hospital laboratories! So they are fixated on numbers - if the labs say it is good - it must be! It isn't inflammation - of course it won't show up as raised ESR/CRP/ferritin.
It gets in the way of diagnosis too - I have a vasculitis, the only way to manage it is pred. It wasn't diagnosed for years because I had no abnormal blood values so "there can't be anything wrong" (aka, it's depression/somaticism/all in your head). They STILL insist on checking them every so often "to see how your inflammation is" - they are STILL normal, even if I can't move for pain!
Hello cjb, thanks for taking the time to read my lengthly comments.
I wrote this from what I experienced and how my doctor managed my gradual withdrawal from a high dose of 50mg for a number of weeks. I then tapered down to 37.5mg for some months because I can't tolerate prednisolone all that well.
The withdrawal started when my thorascic specialist was satisfied the sarcoid had stopped spreading in 2015. It had stopped spreading in November 2014 and withdrawal took place from then on until March, but, in May 2015, it flared again. so I had to start the process over again. I was not happy as you can imagine.
The tapering off was very gradual, spending a week or up to two weeks on one level of doseage, before dropping to the next level.
It get's more difficult at the lower levels.
Cjb, please keep your doctor informed about what you are doing, so he/she knows where your prednisolone levels are at and how long you should be at that level. Prednisolone is not to be messed with.
In Australia, the prednisolone tablets strengths are 1mg, 5mg and 25mg.
I forgot to mention one other side effect, I have brittle bones because of prednisolone. I don't know if that is reversible. I do have a liking for cow's milk and drink a lot of it.
All the best for the future.
Hello Jill and everyone
I have suffered from Chronic Urticaria several times in my life. Lasting 2 years each time then going away. I was able to keep the hives away with Allegra and other antihistamines.....this time nothing worked accept the Prednisone and Cyclosporine both not the best to be on but the alternative is much worse!! I found a wonderful doctor at Johns Hopkins in Maryland in the US. Once she got the hives under control with the meds I stayed on that level for awhile then she VERY SLOWLY dropped me down. It has taken me over a year dropping the prednisone down by 1 mg each time keeping me on that dose for awhile each time......I have gone through hundreds of 1 mg. I am now down to 3 mg and have been for a couple of months. I have appointment to see her next week to discuss going down again to 2 mg. I have had some stress in my life so she did not want me to go down sooner because of that. Going down so gradual is KEY with prednisone!! Ever so slowly! Yes Prednisone is both good and bad!! For me it has been a blessing for me to have a normal life back! I pray it continues after I go completely off....hopefully I can. Because I have gone down extremely slow I have not had withdrawal issues...or side affects. I did notice my hair became dryer lately ...some hair loss (may not be due to prednisone. I have Osteopenia with my bones not sure if it's meds or age as I am 65.
this blog is wonderful to be able to share with everyone! Let's all keep in touch.
Have a nice day
Wendy
Most doctors with patients on long term pred offer bone protection medications - such as Fosamax.
Osteoporosis due to pred can be reversed - by using one of the bone protection medications. There are some that are better than others and you should discuss it with an expert - not a GP.
Thanks Eileen, I'll do that.
I think you are right. It's sometimes hard to explain how debilitated I feel without describing a list of symptoms that make me sound like a hypochondriac. And yet a year of UC on and off steroids has taken me from a regular long distance walker and swimmer to struggling to find the energy to get through the day.
I know a little about vasulitis - my late husband had Churg Strauss Syndrome now called Eosinophilic Granulomatosis with Polyangiitis (EGPA) and had to take very large doses of Prednisolone. Thinking back, he never complained about feeling awful as a result of the withdrawal and I realise now that he must have been more stoic than I am.
Thank you agan, zss. I am steroid-free at the moment. The GI consultant has said he would like me to try the immuno- suppresant Azathioprine next time the UC flares as he is unhappy at the prospect of me taking steriods precisely because of the risks to my bones. I also had a scare with my eyes when my vision went for a couple of minutes. What appeared to be thick doughnut like rings appeared as if I were looking through tiny slits. I think that was temporary steroid-induced glaucoma. I had a through eye check after that and was given the all clear but it was frightening at the time.