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Prednisolone withdrawal side effects

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jill18540
jill18540

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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  • j72498
    j72498 jill18540

    Posted

    Hi I am a new member and have been fascinated to read this discussion. I have sarcoidosis of lungs and over the last 18 months it has become very aggressive and I am now on oxygen 24/7 and have a wheelchair to get about.  Several years ago I was given a short high Dose of pred. But did not think it did anything for my condition so was not given anything else just a monitor is of a slow progression - until now.  I have been turned down for a lung transplant as not considered a suitable candidate (I presume they do not think I would survive it).  I have just been p

    ut on pred. Again but a very low dose 5mg for a week increased to 10 mg a few days ago and supposed to be kept on this low dose long term.

    after reading the discussion it seems I am going in the opposite direction to everyone else, but I am now worried about the long term effects of even this low does.  

    • zss
      zss j72498

      Posted

      Hello J, low dose prednisolone over a long term is a legitimate therapy. At one point it was suggested to me, had I not responded favourabley to my last course of prednisolone in 2015.

      Unfortunately sarcoidosis sufferers are not considered candidates for lung transplants because.... The newly transplanted lungs will also end up with sarcoidosis.

      I asked my thoracic specialist that question after prompting from family members. The risk of this surgery is just not worth it.

      J, it's terrible to read what you are going through. I just hope you get relief and it's somehow stopped from getting worse. I sincerely wish you all the best.

       

    • ihavenonickname
      ihavenonickname j72498

      Posted

      Welcome to our discussion!

      No medication comes free of charge.

      All each of us can do is weigh the pro and con and make an educated decision

      So for you the question is if I do not take the steroid, I will _______. If I take the steroid, I wll_______. It is a balancing act with no clear, easy answer.

      Being blunt...your fall risk has been reduced by the use of a wheelchair. Therefore your hip is less likely to fracture because of osteoporosis.

      Taking prednisone will decrease your pulmonary inflammation, making it easier to breath.

      Perhaps you will consider your quality of life on prednisone versus the quality of life without prednisone. And the quantity of life on prednisone versus the possible complications of adverse reactions to the prednisone.

      You are a survivor, that counts for a lot. Each of us has to decide, is low quality long time life more important than high qualiity short time life. Yes, we would all love to have high quality long life.

      An aside...I am on 3L 24-7...and I too use a wheelchair, a power one. I have had JRA for 54 years...I am 65 and have rheumatoid lungs. I am followed by National Jewish Health, Denver, Colorado USA the #1 respiratory hospital in the world.

      Sometimes prednisone is the correct choice...sometimes prednisone is rhe best choice.

      big, warm hug

    • EileenH
      EileenH j72498

      Posted

      Only about 40% of patients on low dose pred develop osteoporosis. About half of people in the USA are thought to suffer from some degree of low bone density. So it is difficult to say whether the person developed their low bone density because of pred or would have anyway.

      I have been at a far higher dose of pred than you are speaking of for over 7 years and my bone denity has barely changed - dexascans done at the outset and a few weeks ago as proof. I take calcium and vit D supplements (which have been shown to reduce the loss of bone density) but I have friends with the same illness as me who didn't and their bones were also fine. There are many other risk factors for broken bones besides low bone density and fall which can also be removed or improved - they include vit D status, hydration status, removing physical risks such as trip hazards, poor lighting, loose rugs, pets around your feet and so on. 

      Pred isn't all evil - luckily, as it is the only choice for us!

    • j72498
      j72498 zss

      Posted

      Hello Zss. Thank you so much for your reply, I feel reassured now that I am on the right track and I do feel much better even though I have only taken 10mg for about 5 days.  I makes sense about the lung transplant and if I can keep at the level I am at now, then I will be grateful. Best wishes to you too. Jan
    • j72498
      j72498 ihavenonickname

      Posted

      Thank you so much for your reply, much appreciated and you are quite right in what you say.  I feel reassured by the lovely warm replies I have had.  thanks again.  Jan
    • j72498
      j72498 EileenH

      Posted

      Thank you Eileen, much appreciated.  As I mentioned, I feef reassured by all your lovely feedback and warm wishes.  I wish you all well.  Jan UK
  • jill18540
    jill18540

    Posted

    Hi everyone

    Just thought I would let you know that today is my last day on Prednisolone!!!   I have been reducing fairly slowly but not probably as slow as I should as I have been having lots of muscle aches in my legs and knees and great stiffness as well.  But I have wanted to get off them if i could, so I've persevered and have been reducing by 0.5 mg a week and plan to stop them today and basically see what happens!  I know that i will feel dreadful  in a day or so and that it will probably continue for several months but at least I will be off them.

    Also I have been feeling exhausted which just develops over the day so that by the evening I am almost like a zombie. I also have no appetite and would happily go all day without food although of course I've been making myself eat and drink something. Can anyone just confirm that that is what i should expect?  I'm fairly sure it is another side effect and will eventually get better hopefully.

    All the best to you all for 2017 and thanks for all your comments and encouragement.  

    Jill xx

    • peggy_56092
      peggy_56092 jill18540

      Posted

      Hope you are well.  Your side effects sound like my PMR symptoms before I was diagnosed. I lost 20 lbs, couldn't walk, etc.  And then pred solved all those problems.  I started at 15 mgs 2 years ago and now have stayed at 6 mgs for 2017, that included knee replacement.   Are you still off Prednisolone?

  • helen54849
    helen54849 jill18540

    Posted

    Hi,

    I am on this drug at the moment 20mg to stop kidney transplant rejection.  In October I had 3 days of the highest dose IV that you can have.  After I had the last dose I started with aching limbs like flu almost but without the cold some days it was legs others arms then my front and back and my head.  It was like the steroids were working there way out of my body and it wasn't pleasent but it passed after a week.  The dose I am on now I have the same effects but milder so achieness, headache and nausea.  I don't have however the usual more common side effects like the increased appetite or the moon face, in fact it is quite the opposite I have lost my appetite. Hopefully I won't have to take them long term as I think they are nasty, they have an effect on HB levels and gloucose making it rise.  They seem to be the go to thing for many conditions and I have had comments from doctors such as why don't you like them, my reply you take them and you will see.  I hope you feel better very soon.

    • jill18540
      jill18540 helen54849

      Posted

      Hi Helen

      Thanks for your reply.  How I agree (and sympahtise) with you about the effects of Prednisolone.  It really is one of those Catch 22 medications, - so many people have been in the situation (as I was at first too) ,where you can't actually survive without them but then, having got over the intial problem, you've got to get off them.  And as another member said, most doctors have never been in that situation of trying to reuce them and withstanding the side effetcs and have no idea.

      All the best and my love to you 

      Jill xx

  • eileen06891
    eileen06891 jill18540

    Posted

    That was great.  I have gone from 20mg perday to 0.  In July  i felt great and all of avsudden i fell awful again.  Have you ever had that happen? While you have been clear?

    • wendy62425
      wendy62425 eileen06891

      Posted

      Hi Eileen

      How slowly did you go down off the Prednisone from 20mg?  My doctor has me go down very slowly from 20 mg I went down to 19mg for a couple of weeks then 18mg for a couple of weeks then 17mg and so on. I've gone through lots of 1mg tablets 5mg too.    I am now down to 4 mg. So important to go down ever so slowly so it won't be a shock to your body.

      i wish you well!

      Blessings,

      Wendy

  • Funkimunki17
    Funkimunki17 jill18540

    Posted

    Hi Jill

    I was on Prednisolone, until my GP surgery dropped me from 8 5mg tablets per day to 6 5mg tablets per day. And now they've just abruptly stopped me taking then,so now I am getting a hell of a lot of withdrawal symptoms as well as the side effects of coming off them so quickly. But my GP surgery aren't going to ween me off them slowly or give me any more due to the long term side effects of prednisolone but didn't think of the side effects of abruptly stopping them?

    Also I am getting problems with my physical health, as most of the time I feel like I have been on a permanent night out as I get terrible head aches, my legs feel like jelly and then all of a sudden I'll fall down. I don't know if it's side effects of the prednisolone or withdrawal effects from being taken off the medication so abruptly?

    Hope this might help out?

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