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Prednisone withdrawal symptoms

Posted , 18 users are following.

maria49950
maria49950

i have been slowly reducing my Predisone over the past 8 months.  I am now on 5 mg.  battling to get below that.  I am experiencing horrific hot flushes accompanied by intense sweating.  Doesn't last long but really awful.  Feels different from the hot flush from menopause.  Heat comes from my back, if that makes sense, and then spreads to my neck etc. back gets so hot that I have to stand up to cool off.  Could this be withdrawal symptoms from preds and if so how long does it last.  We are in our summer with 35 degree temperatures and I am suffering with at least 10 a day and wakes me at night.

1 like, 20 replies

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  • EileenH
    EileenH maria49950

    Posted

    I'm not sure it is really withdrawal symptoms - but it could be due to poor adrenal function. Below about 7 or 8mg pred your adrenal glands have to start producing the body's own natural corticosteroid, cortisol. If you try to reduce too fast your adrenal function doesn't keep up and you have various symptoms. Many of the less respectable internet side who are generally trying to sell you their products do list extreme hot sweats as a symptom. And of course - it being summer won't be helping!

    You are already at a pretty low dose which isn't going to cause many problems. If it were me and 6mg was better I would go back until the summer temperatures fade a bit. Then try the next reductions over the autumn and winter. 6mg is also low enough to encourage your adrenal glands to sort out their job of producing cortisol and the slower you go, the less upheaval your body is undergoing. It isn't a simple process, it involves several organs and hormones - and as well all know, hormones can cause trouble!!!

  • margaret89358
    margaret89358 maria49950

    Posted

    Maria I am on 15mg if Predisolone

    And I have only been down to 11mg, but I have had sweating ever since I started on pred, I go out in a jumper even in the cold weather. It is worse than the menopause, my hair gets wet the sweat drops down my face,  back it is the Pitts.

    I do symphathise with you. I am ever hopeful that it will get better. Just knowing we are not alone helps get through this. Take care 

    • amkoffee
      amkoffee margaret89358

      Posted

      You just described me, we are two peas in a pod. Like you I have been unable to get below 11 mg. I've been back up to 15 several times and I have tried several methods to reduce without success. I am currently doing the dead slow method. I am at 12 mg a day and so far so good. But the real test will be when I get to 10 mg.

  • amkoffee
    amkoffee maria49950

    Posted

    That my dear is from the prednisone you're taking not withdrawal just a side effect. And I agree with you that it is nothing like what menopause hot flashes feels like it's entirely more intense and just awful. I get them too and it sucks because I had just stopped getting them from menopause when I had to start prednisone and I'm back to the hot flashes.

  • alley2
    alley2 maria49950

    Posted

    Hi Maria I have GCA currently on 8.5 pred over the last 6 days had this headache creeping on me and getting worse more like a pain. I did have shingles 8 months ago maybe the head pain is a relapse from that cause I had shingles in my head right side and also my eye.  My whole body is aching had trouble getting out of bed this morning I am thinking GCA might be active my esr has been rising 1 a month currently I know 16 isn’t high but it could be for me the whole disease thing is a struggle only when you think you’re feeling good it comes back.
    • EileenH
      EileenH alley2

      Posted

      If your inflammatory markers are on a rising trend that suggests you are at too low a dose of pred to manage the inflammation. Combine that with returning symptoms and you need to speak to your doctor. Urgently.
    • reggie92967
      reggie92967 EileenH

      Posted

      Maria, I'm a guy & I've been experiencing being overheated, I guess hotflashes. They come on infrequently & go away quickly. I've played the way up, way down & everything in between game with prednisone. Been at 10mg. for several months now. Still allot of fatigue, stiffness, pain but nothing like it was prior to diagnosis & starting the steroid. I couldn't even get out of bed before, simple daily task were like climbing Mt. Everest. So hard because I'm a type-A, obsessive compulsive, & an on the go person, but can't be that way anymore, so then depression, & anxiety sets in. Talking to my Rhuem. next month appt., about alternatives to steroids ?

    • maria49950
      maria49950 reggie92967

      Posted

      Hi reggie

      yes my symptoms mirror yours.  Heat and sweating comes on suddenly and disappears within a minute or so.  Also was very active, now with the stiffness associated withe PMR also claudication of legs due to peripheral artery disease I am somewhat limited in what I can do.  Off to rheumy end Feb as my vascular surgeon seems to think there may be a connection with the PMR and the claudication.  I am not A typical for hardened arteries as I don't have the usual factors and after an angiogram it appears that my arteries are thinning due to buildup of cells on the walls. All very confusing.  But I keep walking as far as I can even if most days I need to sit on the kerb to rest for a couple of minutes before starting us again.   Optimistic that I will beat both these conditions. 😌

    • EileenH
      EileenH reggie92967

      Posted

      Unless you are in the USA there is no alternative to pred for PMR. In the USA you MAY be able to get funding for Actemra but it isn't approved for PMR, just GCA. And Actemra isn't sweeties either.

      There are DMARDs, usually used for rheumatoid arthritis, which some rheumies believe help patients manage on a lower dose of pred. Maybe - it isn't guaranteed. But they don't replace pred.

    • EileenH
      EileenH maria49950

      Posted

      Peripheral artery disease is a known late consequence of vasculitis - and PMR is a vasculitis. A fair number of patients who are diagnosed with PMR actually have Large Vessel Vasculitis - this paper has a nice diagram (Fig 1) that shows how they overlap: 

      https://academic.oup.com/rheumatology/article/56/4/506/2631560

      and maybe your doctors might be interested in it.

    • alley2
      alley2 EileenH

      Posted

      Hi Eileen well Doc has put pred up to 10mg that has made a very noticeable difference head pain gone body ache has settled and moving around much better such an amazing disease this GCA.  Going to Vascular surgeon and My Immunologist on the  28 feb probably get booked in to have stint put in left arm not looking forward to it.  Be interesting to see what my markers are in a weeks time before my appointment I picked up on all of my blood tests with what goes on you got to be your own doc.
    • EileenH
      EileenH alley2

      Posted

      Oh good - but still keep an eye on it!  Yes, not necessarily your own doc but you do need to be aware of what is normal for you and if it changes - act!
    • maria49950
      maria49950 EileenH

      Edited

      Thanks for this Eileen.  Definitely looks like this may be the answer to my thinning arteries.  Vascular surgeon obviously suspects this thus his insistence I see a rheumatologist.  Seeing one 28 February.
  • theresa91552
    theresa91552 maria49950

    Edited

    Hi Maria! My husband was left on prednisone for 28 years after having a liver transplant. Now doctors decided to get him off due to getting diabetes and no one wants to prescribe it any more. They did wean him down to 2 mg but he is really a mess with very high inflammatory markers, losing weight, sweating at night, fatigue. He was working full time and riding his motorcycle before this prednisone withdrawal, now just existing. The only help we got was told to find a rheumatologist which will take a while to get into. I hate seeing him like this. Do you think we should continue calling his transplant coordinator and family doctor or just sit and wait to get into a new rheumatologist?

    • Anhaga
      Anhaga theresa91552

      Posted

      This post is several years old, and the Patient forum is basically inactive now. Maybe you can get some advice on the HealthUnlocked forum? Sorry, I can't post a direct link as it gets moderated. Will try to find something and post in next reply.

    • EileenH
      EileenH Anhaga

      Edited

      Done it for you - because I can xxxx

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