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Down to 7.5mg pred, feeling unwell

Posted , 12 users are following.

Susanne_M_UK
Susanne_M_UK

I've been slowly tapering my pred. I've had problems in the past tapering down successfully as some of you may remember. I've

been tapering in 0.5mg increments over 2-3 weeks and usually have flu like symptoms for a couple of days after, probably withdrawal symptoms, but I just cope with that.

Since dropping to 7.5mg though, I've been feeling unwell for about 10 days. Is this the point where my adrenals try to kick in? I know it's somewhere around here, although my rheumy says it's 5mg.

I have some other medical issues as well, some new and some not so new, so maybe it's a combination. The new ones are glucose intolerance, ie pre diabetic. I've followed a low GI diet since mid August and have lost well over a stone, or 7kg. The pred certainly didn't take any prisoners in my case!

I have to say, for those who don't know me that I have GCA and have been on really high doses of pred for a long time.

The other newish one is tachycardia, lots of tests and am waiting to find out if I'll have to go on beta blockers. There's a conflict with an inhaler I use for something else. Not looking forward to that one!

So...to cut a long story short, am I now at the point where my adrenal glands are coming back to life?

0 likes, 14 replies

14 Replies

  • Babazaga
    Babazaga Susanne_M_UK

    Posted

    I too have GCA and have been on Prednisone for the past 18 months.  I'm down to 2 mg and experiencing intermittent headaches and neckaches and wonder if this is withdrawal or GCA rearing its ugly head. Neither is terrible, but noticeable. One of the things I'm plagued with is a sense of panic.  As I wake there is a sudden rush of adrenalin and a sense of panic and a series of bizarre images---like a film running in my head with images I cannot control.  This happens before I want to actually get up, but there's no going back to sleep.  I have always been someone who approaches most things with a "no problem" attitude so I have no idea where the panic is  coming from.  Anyone else with GCA  who have had similar events? 

    Susanne, how high was your Prednisone dose?

    • Guest
      Guest Babazaga

      Posted

      Hi,

      I know what you mean. I take a good nap most days and I always wake from a deep sleep with a horrible sense. It takes me a moment to realize it will pass. It never happens at night, I either sleep or I don’t at night. I always keep books next to me in case I am awake for a while.

    • Susanne_M_UK
      Susanne_M_UK Babazaga

      Posted

      Hi Babazaga. You've done really well getting down to 2mg within 18 months.

      I started out on 40mg pred, had a couple of times when I was put on 60mg due to pneumonia and other chest problems. So I kept starting the taper over and over. I had a long period where I couldn't get below 20mg without flares. It's taken me nearly 3 years to get to my current 7.5mg. I'm so happy to finally be there.

      I can't tell you whether your headaches and neckaches are withdrawal or GCA. It's always scary thinking it's the GCA coming back. If you're not due to see your rheumy soon, you could ask your GP for a bloodtest for ESR and CRP, which measure any infection in your body. Hopefully, your GP should be sympathetic, knowing how carefully the illness has to be treated.

      I do get headaches and general flu like symptoms tapering down, but apart from this current bout which seems to go on, they only last a couple of days until my body adjusts to the new dose.

      As for the panicky feeling, I haven't experienced it. It sounds very unpleasant. Maybe another one for your GP? Good luck.

  • EileenH
    EileenH Susanne_M_UK

    Posted

    Yes it could be your adrenal function not catching up. The body naturally makes the equivalent of about 7.5mg pred in the form of cortisol. However, the fact that some people absorb 50% and others up to 90% of the oral dose of pred means the dose where it may cut in varies from patient to patient. If you are a 50% person - it will happen sooner than if you are a 90% person. Most people function OK at 5mg - but you may effectively already be below that.

    Your high doses for GCA will have effectively damped down adrenal function - some people on PMR doses may never actually experience it. 

    I suffer tachycardia due to atrial fibrillation and initially was on an ACE ihibitor. Cue allergic reaction!!! So they chose another selection which has worked well so far over 5 years though occasionally I suspect I develop bradycardia briefly. And while looking something up for someone else I discovered that the antiarrythmic I take is not supposed to be used in sick sinus syndrome (the underlying condition causing the a/f according to the cardiologist) if the patient hasn't got a pacemaker. I don't. Um. And I can't see a cardiologist until January...

    • Susanne_M_UK
      Susanne_M_UK EileenH

      Posted

      Thank you Eileen. I knew you'd come up with the answer! I'll take it very easy tapering to 7mg, probably wait until my symptoms go away.

      Tachycardia - we will have to compare notes when they decide which medication to put me on. My GP is waiting for the cardiologist to advise her. I don't have atrial fibrillation, just unexplained constant tachycardia. As long as the meds don't make me put in weight, I've worked hard, and still am, losing the pred weight. My face is even beginning to go back to its old normal shape.

    • Silver49
      Silver49 Susanne_M_UK

      Posted

      I have/ had tachycardia.I was seen by a cardiologist and given an echocardiogram and 24 hour heart monitor. The only conclusion was an ectopic heartbeat and the offer of beta blockers from the GP for the tachycardia. I declined and it seemed to resolve as I reduced the pred but I reached 1.5 and it came back along with the other PMR symptoms. I realised I had overshot and I was fine at 2.5 so I have increased to 2.5 again and it has all resolved once more. I hope the cardiologist will come up with a solution soon as it can be quite unnerving.
    • Susanne_M_UK
      Susanne_M_UK Silver49

      Posted

      I've had the echo, ECG and 24 hour monitor. The echo showed slight left ventricle hypertrophy, ie thickening of the wall of the ventricle, which they, and I, don't want to get worse. The tachycardia could possibly be caused by the pred and other meds I'm on, but GP is concerned it may worsen the hypertrophy. They have to find a med that doesn't interfere with the inhaler I use. Fun and games!

    • Silver49
      Silver49 Susanne_M_UK

      Posted

      I understand why your GP is now waiting on the cardiologist contacting. I appreciate that you will not want it to get worse. I hope the cardiologist suggests suitable medication soon.
    • EileenH
      EileenH Susanne_M_UK

      Posted

      They identified very slight thickening of the ventricular wall on my echo - put down to the raised BP initially but to the a/f in the end. At the last echo I had it had actually improved.
  • Guest
    Guest Susanne_M_UK

    Posted

    Hi Susanne,

    I am sorry this hellish disease is giving you such a hard time . The only thing I can add is times when I decreased too fast I would get that unwell feeling for a couple days and usually had to go back up by 0.5. Flu like symptoms are common with GCA. 

    • Susanne_M_UK
      Susanne_M_UK Guest

      Posted

      Hi Karen and thank you. Yes, I usually have a couple of days of feeling unwell when I taper and I just accept that and lie low unless it's a real flare, which I've had plenty of, but this one has lasted far longer and it's right on the point where my adrenal glands should start to produce cortisol.

    • Anhaga
      Anhaga Susanne_M_UK

      Posted

      Have you had that synacthen test which is used to determine whether your adrenals actually can make cortisol any more?  I think most people do get their adrenal function back eventually, but a very small number don't.

    • Susanne_M_UK
      Susanne_M_UK Anhaga

      Posted

      No I haven't. I'm due to see my rheumy towards the end of this month and if I'm still feeling rough, I'll ask.

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