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jill18540 jill18540

Prednisolone withdrawal side effects

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 

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  • ann26722 ann26722 jill18540

    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 

  • cjb106 cjb106 jill18540

    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natural function of the adrenal glands and it seems to take a long time for them to get back to normal once the drug is withdrawn.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.

  • EileenH EileenH jill18540

    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.

    • jill18540 jill18540 EileenH

      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

    • Lane227 Lane227 EileenH

      I found that reduction plan in an online search and began reduction on Jan 1st. Today I found this forum and feel as if I'm taking a college course in Prednisone after 15 years of daily use. My highest dose was 20 at RA diagnosis in 2.2002, reduced to 10 rather quickly. In 2009 I wanted to wean off with Rhumy support (but no direction), but thought I was dying at 7, stayed at 8 since then.

      Hope to be down to 7 mgs by the end of Feb. Having read the many informative replies here, I may have to reconsider as it would be a 13% drop. A 4 mg weekly drop at the end of Wk 4 may need to be tweaked.

      Prior to RA debilitation and diagnosis, I had been coughing up small white chunks of what appeared to be bone marrow of some sort. It was dry, could be crushed between my fingers easily and had a destinctive scent I wasn't able to identify. Whatever it was went away once I began Prednisone, but I've wondered if it will return if/when I come off it.

      Just wanted to thank you and everyone else for posting here! I've learned more in reading these 60 posts this morning than I have in 15 years.

      If you have any suggestions for add'l forums, here is my medical history:

      Age 50 RA, Total Knee Replacements in 06 and 08 (ages 54 & 56) and discontinued both methotrexate & plaquenil permanently before first surgery. Walk normally now, but standing from sitting position requires unstiffening hips, ankles, leg bones before taking first step.

      Osteoporosis, family history, plus Armour Thyroid from age 24 to 47 & Premarin from 38 to 47). Stopped both suddenly for Thyroid biopsy (neg) in 1999, believe this triggered RA pain. I may have been asymptomatic prior.

      I am unable to take Calcium except from foods, Inc once a month Fosamax or the Osteoporosis prevention meds that came before.

      Meds are 8 mg prednisone & Humira 40 mg injection bi-wkly since 2005.

      HBP, high cholesterol, pre-diabetic (pred & junk food).

      On Sept 15th I began a nutritional ketogenic way of eating. Adrenal issues seem to affect my insulin levels so I stopped eating all but very low carbohydrates (broccoli, spinach).

      By 3 mo. my blood sugar levels were normal & I am no longer at risk for diabetes. My SED /inflammation level was 6. I haven't flared, but pain registers as fatigue for me and I'm recovering from the flu, increased energy returned yesterday. Oh, I also lost 40 lbs., planning to drop another 70.

      High stress life until 2012. I've been taking care of my mother full time since then. She has moderate dementia, frailty, and asymptomatic lung cancer and heart issue. She will be 90 in March. My life is now peaceful, calm and as stress-free as it has ever been.

      I live in South Florida.

      Any words of wisdom or suggestions you may have for me would be much appreciated. I feel as though I've lived in brain fog since my diagnosis.

      Thank you so much, Eileen.

  • ihavenonickname ihavenonickname jill18540

    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!

  • zss zss jill18540

    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.

     

    • cjb106 cjb106 zss

      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.

    • EileenH EileenH cjb106

      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.

    • cjb106 cjb106 EileenH

      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.

    • EileenH EileenH cjb106

      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!

    • zss zss cjb106

      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.

    • EileenH EileenH zss

      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.

    • cjb106 cjb106 EileenH

      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.

    • cjb106 cjb106 zss

      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.

    • ihavenonickname ihavenonickname EileenH

      True...but these medications can cause severe, unintended osteonecrosis...death of a bone....hips, jaws seem to be most susceptible. I lost a good part, as no longer in my mouth, of my mandible, lower jaw.

      Vitamin D and calcium use should be discussed with an endocrinologist before turning to Forteo or Prolia or other osteoporosis medications.

    • EileenH EileenH ihavenonickname

      If someone already has osteoporosis (which I understood "brittle bones" to mean) it is far too late for calcium and vit D supplements to achieve a lot. When you have osteopenia that is the place to start yes, but once you are beyond that then other medications must be considered - and possibly rejected in conjunction with an expert. It would be unlikely to be an endocrinologist that you would discuss it with in the UK - the rheumatologist or an orthopaedic specilaist would be far more usual.

      Corticosteroids can lead to osteonecrosis too. But it is fairly rare with any of them.

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