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Depressed when trying to reduce steroid dosage

Posted , 13 users are following.

rocketman42
rocketman42

Hi all -

Each time I attempt to lower my steroid dose I feel VERY depressed. It is quite disconcerting and it affects my ability to function. Currently I am lowering from 11 mg to 10 mg but have felt it even when I try to reduce in .5 mg increments.

As if it isn't enough having to deal with all the aches and pains from PMR to have to deal with this too is quite a challenge.

Does it eventually subside if I try to push through or am I destined to increasing the dose again ?

0 likes, 12 replies

12 Replies

  • jillian92038
    jillian92038 rocketman42

    Posted

    My guess is your body isn't ready so don't reduce. Please though wait for Eileen's reply as I trust her to know what is best.

    My limited experience is if you ache - don't rush- just listen to your body. Please don't rush your reduction. I did at the direction of GP who knew nothing and was put back a year or more. Just take it slowly. Good luck.

  • EileenH
    EileenH rocketman42

    Posted

    How are you reducing? From every day one dose to every day the new dose? Try spreading it out a bit - using the DSNS approach your body gets used to the new dose much more slowly so the withdrawal effects are minimised as you challenge your body with the new dose just one day at a time. The next day you are back to what it was used to and it stops panicking.

    I know we bang on about slow reduction - but there is a very good reason for it!!!

    • rocketman42
      rocketman42 EileenH

      Posted

      I have tried it both ways but always seem to run into one issue or another. Eventually I wind up just getting frustrated and don't make much progress. Started out at 15 mg 2 years ago ( with significant improvement w/n 24 hours ) and now I am only down to 12/11 mg. In my book that is terrible.

      Complicating things is the fact that I have other issues such as peripheral neuropathy and lower back issues that the steroid also seems to help so when I drop the dose the pain from those problems also increase making it a real circus along with the depression.

    • EileenH
      EileenH rocketman42

      Posted

      Then that appears to be the dose you require AT PRESENT - it doesn't mean you won't get lower, just not yet. Had you needed 20 or even 25mg to get control two years ago would you feel different about being on 11mg now? It took me over 4 years to get reliably below 10mg, I have been down as low as 4mg only once but functioned best at about 5-7mg and am currently at 15mg again after another major flare and some of the level of that dose is because I have atrial fibrillation that is closely associated with the vasculitis. The cardiologists can't do any more from their side - the vasculitis must be kept under control and that needs pred.

      And since I have had PMR symptoms (plus some other stuff) for well over 14 years and have been on pred for (I think) over 9 years, it is disappointing. You would probably think it is the end of the world. But I am able to function - and that is the whole point.

      Bear in mind that bioavailability has a great impact: I may be taking 10mg and absorbing 90% of it, you may be taking 10mg and only absorbing 50% of it - I'm getting 9mg, you are getting only 5mg worth. Obviously that makes a difference to the effect you achieve.

      I would suggest you get that low back problem looked at - I also have myofascial pain syndrome and that always gets worse as I get to lower doses, with that sorted out I can manage on a lower dose of pred. Has the peripheral neuropathy been investigated for a cause? If it were due to the pred I would have expected it to be worse at higher doses - obviously it isn't. It may be due to vasculitis too I suppose.

      And are they sure it is "just" PMR? When people have problems getting down to 10mg it is sometimes because it isn't the PMR we talk about.

    • rocketman42
      rocketman42 EileenH

      Posted

      My peripheral neuropathy or more accurately, cervical radiculopathy, is from having had severe cervical spine stenosis that I had corrected with a 4 level spinal fusion ( C3-C7 ) about 7 years ago. I was left with constant burning, numbness and weakness in my hands and forearms because the stenosis had already caused damage to my spinal cord and that can't be reversed.

      My lower back and leg pain and weakness is secondary to lumbar spinal stenosis but I am trying to avoid additional surgery, if at all possible.

      So as you can see, between the 24/7 pain from the neuropathy in my hands, the pain in my back and legs and the pain from the PMR it is difficult to sort things out. When I try to reduce the steroid who knows what's flaring since it is helping with all those things.

      In addition, the chronic pain that I have had for years, in and of itself, is enough to cause depression and now add the mood swings secondary to the changes in steroid dosage and it's a real circus.

      Other than that I'm 100% !

    • EileenH
      EileenH rocketman42

      Posted

      Haha - a friend with lupus said the other day she was told she was "otherwise very healthy"!!!!

      My attitude to pred is that if it makes other problems improve - in my case it is the atrial fibrillation which is obviously associated with the inflammation - I take what I need for that. Life is far too short to spend it in pain if there is a way of relieving it. And there are also other ways of helping with depression whatever its cause - as you so rightly say, the pain and PMR itself are enough on their own. Inflammation and depression go together they have finally established and it has been known for a long time that depressive mood is part of PMR.

      I'd say don't fight the pred - accept it as a gift that is making life more comfortable. I don't go a bundle on being back at 15mg pred yet again - but my quality of life is massively better with it.

    • ricky23486
      ricky23486 rocketman42

      Posted

      rocketman.

      i just read your post which i had missed before writing my own list of woes in Fat and Feisty. When i realised just how much you are suffering it made me almost thankful for being in the condition I am in -!

      i do wish you continued resilience to cope with what is.....

      ricky

  • alley2
    alley2 rocketman42

    Posted

    Hi I am the same I've got my self to 10mg pred the roller coaster depressed and sick of being sick the aches and pain in the morning are really bad I push through I know it is not my GCA somehow I can feel the difference it is either my PMR or Fibromialga maybe something else after I'm do a heap of tests this week and next even exrays. I find I push myself to go forward Gardening Horses my dogs keep me going with getting up. One thing I'm blessed to have good doctors they listen to me. But with all that I would love to go back to work but can't tell what is each day will be like. When you have these aches and pain and you go ouch when you walk or have shortness of breath people don't relise how sick we are cause it doesn't show on the outside unless you're on high dose of pred and have a moon face. Aren't we all sick of the moon face I look at it like well no wrinkles on my face. My cupboard has two sets of clothes one for high doses and others for a lower dose.

  • margaret22251
    margaret22251 rocketman42

    Posted

    Hi rocketman i am currently reducing from 10mg to 7.5mg.

    i have five mg morning and two and half at night. i am doing he dsns method, i find when i am reducing say from three mg to two and half mg, when i get to 2.5mg i stay at that dose for three weeks before trying to reduce further, as from experience by reducing quicker as the doctors want me too, i just end up in pain then end up at ten mg again.

    i have been trying to reduce from ten for five years, on and off all because doctors wanted me to reduce quickly to get off pred. in my case it oes not work, so now in a nice manner i tell them what i want too, so far my rhymi says ok, and my doctor said herself thats the best way.

    so my advice is listen to Eileen, slow slow is the best way.

    good luck

    • nick67069
      nick67069 margaret22251

      Posted

      are you really reducing from 10 to 7.5? or did you make typo? That is HUGE step . Usually below 10mg everyone uses 1mg or even 0,5mg steps. Ask your doctor for 1mg pills ( sounds to me that you have only 5mg and it is much harder to split them into smaller pieces.)

    • margaret22251
      margaret22251 nick67069

      Posted

      Sorry i meant to say i started reducing from 10mg using the dsns method and at the moment i am at 7.5mg.

      just read my message again, what a mess it was late when i wrote it, put it down to having a bad day, a bit like the IT guys

  • rocketman42
    rocketman42

    Posted

    For some reason I no longer get email notifications when there are posts to threads that I follow even though I have it set to do so in my settings.

    Anyone else have that problem and is there a solution ?

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