Have been on 7.5 gm of preds for 2 months (reduced from 50 mg since Aug.2014) exhausted daily.

Posted , 14 users are following.

I am anxious to get off this medication as my life has come to a standstill.  I was prescribed preds.(50 mg) as a result of GCA in Aug '14.  Now down to 7.5 and constantly tired.  Should I reduce the dose every couple of months regardless of the fatigue.  Please advice.

0 likes, 22 replies

22 Replies

Next
  • Posted

    No - absolutely not, not without great care! You have reached the point now at which your body has to start to make the natural corticosteroid cortisol which is essential for life. While you are at a dose above about this point a complex feedback system stops the adrenal glands producing more as it knows there is enough of the artificial stuff, no more is needed.

    One of the symptoms of adrenal insufficiency is extreme fatigue and when it gets worse below about 8mg it is a sign your body hasn't caught up yet. If you go slowly enough, very small reductions with a couple of months between reductions then it may manage to readjust. If you continue to reduce, ignoring the warning signs you may become very ill and have an adrenal crisis, especially if you are under any stress, physical, emotional or illness, but it can just creep up on you anyway. If you can manage to get to 5mg, one of the top GCA/PMR rheumatologists in the UK likes to keep his patients at 5mg for at least 6, preferably 9 months and he finds this does make the subsequent reduction easier.

    "I am anxious to get off this medication as my life has come to a standstill."

    I'm sorry you feel this way - I am back to 15mg after a PMR flare at 5mg and I have to say that without pred my life would have come to a standstill again - I wouldn't be able to do anything because of the pain and stiffness. It is a bit different with GCA, in general at least you don't have the stiffness - but without it you have to remember that your life could have been affected a great deal more: GCA blindness is irreversible.

    I can only say that if you continue to reduce at present the fatigue is likely to get even worse - won't that bring your life to a total standstill?

    • Posted

      Thank you so much for your advice - maybe I should accept the obvious that since I am 90 years old my life has naturally come to a stand still!

      I shall, however, follow your advice and not rush to reduce the preds.and hope that one day I will be able to have my weekly swim again.

    • Posted

      Mary, I was thinking about what you said, life coming to a standstill.  I'm somewhat younger than you, although as I'll hit my three score and ten next year I'm feeling old father time trampling closer to my heels.  I think there is always the inner life, and that never ends.  These times of illness can even been seen as opportunites to turn inwards and become acquainted with the immense sacred inner world that is part of being human.  As c s lewis wrote in one of his books, the inside is bigger than the outside.  
    • Posted

      Many rheumatologists expect their older patients may need a low dose of pred for the rest of their life - as much because of adrenal function not being as good as when they were younger. On another forum we have a lady who is older than you and I think she has finally persuaded the doctors to stop trying to get her 5mg dose lower. What is the point? With the best will in the world, she is unlikely to still be taking pred in 10 years time is she? If I can get back to 5mg I shall be in no real hurry to get lower - and I'm not 64 yet.

      If you are feeling reasonably well on 5mg why can't you go for a gentle swim now? There is no reason why it should be easier when you are no longer taking pred than now at what is a very low dose and which is probably making you less fatigued than if you were taking less.

  • Posted

    I have CGA since 2013.and on Pred

    Based on my oneness experience I may say the fatigue I you experience die not come from the Pred which takes care of the inflammatio.

    Did you check if you have anemia ?

    I had fatigue once and took Iron supplement + Vit b12 for quite sometime and the symptom was gone.

    If we taper the steroid before our system requires we may have a flare and this will delay the process.

    Without being an expert I had some experiences during these past three years.

    I may say I became an expert of my own system! 😊

    Wish you the best and keep safe 🌺

  • Posted

    Like Eileen, I got to 5mg, flared and had to go back up to 10mg.  Back to 7.5 now.  Like you, I desperately wanted to get off prednisone and tried to bull my way through it. Found out the hard way that PMR has a life of its own, and at least I did not have the capacity to bear the pain.  Further to the point, I was flaring every other day and clearly getting worse.  Convinced now that the inflammation causes problems on its own and cannot be allowed to persist.  So I would definitely advise against trying to push thru the pain and taper in the face of it all.
  • Posted

    I'm sorry you are so frustrated. I totally relate to the fatigue having tapered this, my fourth flare, from 80 mg pred (my other flares only needed 60 mg.) to the 15 mg I just reduced to with .8 ml methotrexate and actemra. June will be 7 years with this GCA, PMR, PBC and possibly another autoimmune that messed up my heart's electrical system requiring a pacemaker. One of the two assisted chambers of my heart doesn't beat without it. I try to deal with that with humor. Since we live about 20 miles from the famous Daytona International Speedway in Florida I call my pacemaker my Daytona sparkplugs. I also joke that I'm missing a lub or a dub without it. I sleep about 14 hours a day which is crazy since I can hardly sleep when I first start taking pred. I'm lucky to have a very supportive husband. I hated to have to give up my 29 year old business. I loved what I was doing and hold out hope that I can work again part time someday even though I'm 70. I do have my days when I'm more depressed even though I take an antidepressent. I also count my blessings and remember there are those who have it alot worse. Jan
    • Posted

      Agree. Jan, we better be able to look at the positive aspect of our health condition and to keep strong on this fight!

      We are not alone!

      We must do the best we can , to keep our peace of mind, our joy regardless our reality!

      🌺

  • Posted

    How great it's to be able to exchange here our experiences and to read the explanation of people like Eilenn H with her massive knowledge regarding the inflammation and the correct use of Pred - which is the one to take care of it!

  • Posted

    I too have GCA and have had so many flares since it started 18 months ago that I've stopped counting. Some of the GCA symptoms are flu like symptoms and extreme tiredness, so when we flare, these symptoms are likely to present as well.

    I spend the majority of my time either asleep or resting these days, even now while on 40mg pred and 12.5mg MTX, probably due to the rheumy messing around with my tapering at too fast a rate. Yes, I do protest and make my own adjustments to a certain extent, and even pointed out that I too want to reduce, but the suggested taper is too quick and too high.

    You are on a low dose now, take it easy, don't rush things, and let your body adjust. Good luck!

  • Posted

    I have just been diagnosed with polymyalgia rheumatica and was started on 20 mg of prednisone so I have only taken 3 days of this medicine. I hope this is my answer because I have suffered long enough. I have a very difficult time sleeping and other times I just nod off. 
  • Posted

    simple answer NO its not a race to the zero pred its about listening to your body rather than complying to whats written in books etc  we are all different and need to take things slowly or pay a price carolk 
    • Posted

      Listening to your body is right although sometimes it can be hard to interpret the signs. Today I have woken to hip pain, the worst since Christmas time when I started on Pred. I've been trying to work out what it is that has caused it. Yesterday I vacuumed through and mopped the floors. Could be that. Tuesday, Thursday and Friday I drove for a couple of hours. Could be that. Thursday was the first day on 15 mg after a slow couple of weeks tapering from 17.5mg. Could be that. Also yesterday, Friday, I started a new bottle of 5mg Pred. Could be that. At the moment I have no idea what my body is telling me. Hopefully I will work out which one (if any) it is. Hard to work these things out when you drop in an out of brain fog. 

      Happy days.

    • Posted

      Watch out for that new bottle of pred!

      I had been fine on 5/2.5mg enteric coated pills for months - in blister packs. Suddenly I was handed a large bottle with loose ones in for both doses - it was while we were transferring between the UK and here so I got a few months worth at a time. Within a couple of days I started to flare on the 5mg tablets. I tried just the 2.5mg ones and was fine, back to 5mg ones, flaring again. Of course, I used twice as many of the 2.5mg ones so ran out quite quickly and had no source of replacements - you cannot get enteric coated pred outside the UK. You can't get prednisolone at all here, just methyl prednisolone or Lodotra. Medrol didn't work well for me right from the start and I developed a full-blown flare which went on for months until I was switched to Lodotra - same miracle result as at the start.

      I have no idea whether it was the filler from a different manufacturer or if they were counterfeit tablets - also a possibility. I called the pharmacy and they claimed no-one else had complained. I'll never know - but it can happen.

    • Posted

      Interesting! Slightly different to you in as much as the new bottle is exactly the same as the old one (Deltacortril Enteric) and from the same pharmacist albeit a month later. Will keep a beady eye on it and will go back to them if it stays the same. Luckily I have an appointment with the rhuemy on Wednesday so will ask about it.
    • Posted

      Of course, you can't tell if they are out of date when they come loose in a bottle. I handed back to my pharmacist a couple of blister packs where the date was about to run out. I always check the dates.
    • Posted

      Doesn't mean the supplier was the same though ...

      I have a very suspicious mind!

      And of course - while each of those other items you listed may have been innocuous, all together might be a very different matter. 

    • Posted

      Yes, it's not until something happens and you think back to try to pinpoint the the reason that you realise that you could very well have overloaded somewhat.

      Sometimes It seems as if life gets in the way of PMR rather than the other way round. :-)

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.