Anxiety while tapering

[christi48]

I've been doing a DS taper since April, from 5 and now down to 4mg. I have noticed every time I start a new taper I experience anxiety which comes on about halfway through the taper and can be quite severe - racing heart, loss of appetite, obsessive thoughts, fear and sadness and problems sleeping. I tend toward anxiety anyway and have been treating it successfully, but these episodes override those coping skills. Has anyone else experienced this while tapering? In the past, after a couple of weeks on the lower dose, the symptoms have subsided, but I'm having a really hard time this time around and would appreciate hearing from anyone who would like to comment or who has experienced this. Thank you.

[piglette]

It sounds like your adrenals are complaining about having to start doing some work again.

[SheffieldJane]

This is quite a common effect. I find the low mood and anxiety increases when I taper. I am also at 5 mgs and feeling stuck. My son recommended a supplement called B-Relax. It contains Magnesium and B Vitimins ( not cheap), just google it. He uses it to smooth the bumps of working night shifts. So I decided to try them and they do appear to help. They might work for you too.

[Purplecrow]

Answer, yes . Tapering is challenging, Im still doing it, 10 years since diagnosis. I have begun using acupuncture to help with withdrawal. Worth a try . It helps.

[Ann1A]

Yes I definitely suffer with bouts of anxiety during a taper, I become tense, jumpy, impatient and bad tempered. Sleep is always hard to achieve but I think that is the steroids. My rheumatologist thinks I am showing the signs of adrenal deficiency at these times, and i am on a new taper, reducing only a quarter of a mg and on alternating days with normal dose, which i think has helped on the two occasions I have tried it, waiting to start a third. I've been trying unsuccessfully to get below 10.5 mg for 2 years, so this success, if maintained, is a big thing for me.

[christi48 in reply to Ann1A]

Thank you for taking the time to reply. Best wishes to you.

[SnazzyD]

Hello, I had this too but sometimes more delayed than when reducing from the higher doses. I notice you had the same issue 9 months ago at this dose level. I really struggled with my adrenal function being slow to return . At times the way of getting through was not putting my body through so much in order to lower its cortisol requirement while things caught up. What do you do in the day? Is there anything you can reduce in order to take the strain off? I found it all added up, even nice things. I found many of my cortisol ‘tokens’ were taken up by caring for a horrible relative so I didn’t have much left for much else. I walked the dogs every day but a drive to the supermarket 5 miles away could render me useless. Also, the anxiety, being overwhelmed, obsessional thoughts etc, though triggered by low cortisol also had a basis so I tried to work through that too by talking to someone.

[christi48 in reply to SnazzyD]

Don't see my first reply to you. Hope you get this... I mentioned that I have been trying to stay as busy as possible to distract from the anxiety, sadness. Being alone with the thoughts is frightening. Thank you for being there...

[SnazzyD in reply to christi48]

It’s a tough balance because being busy can also make things worse if your cortisol output isn’t good enough yet to cope. Slowing down might actually make things easier.

[darkred in reply to SnazzyD]

I have survived difficult periods of my life by being busy. It worked then. Now, I'm facing a new challenge, a toxic person in my life but not in my household. In the beginning, I brainstormed different solutions. None of them seem reasonable at this time.

"Busy" is not going to work this time. What is different? I'm on a medication that changes how I think and feel. A medication that has changed my physiology and brain chemistry.

What to do? My conclusion: Do nothing. Survive each day. Eat something healthy even if no appetite. Stay away from toxic person.

My children have their own challenges in life. Injecting my negativity into their lives will only make me feel guilty for doing so and make them feel helpless because there is not an easy solution for most of us. They, too, have experienced this person's toxicity but not the same type and degree of toxicity.

I do wish they could or would try to understand what many have reported on this forum. The change in our physiology with PMR and Prednisone, whether on high doses or "withdrawal." The change in our brain chemistry!

[darkred in reply to darkred]

Now a team of scientists from Leiden University Medical Center in The Netherlands has found evidence suggesting the use of prescribed steroids causes structural and volume changes in the white and gray matter of the brain.

medicalnewstoday.com/articl...

The study originally appeared in the BMJ.

[HeronNS in reply to darkred]

Interesting.

[Lclmlbls in reply to darkred]

That explains my increased anxiety levels. Just another side effect to cope with☹️

[PMRpro Ambassador]

Pretty sure that is your body adjusting to the change in dose. And at lower doses it merges into adrenal insufficiency as you are on the cusp on enough/not enough corticosteroid while the adrenal glands are adjusting. The way to get them to catch up is to stick it out at the lower dose. Perhaps slow the taper even further and have holidays between taper steps.

If it gets too bad and you feel you aren't coping, speak to your PCP or seek some talking therapy which would also probably help.

[christi48 in reply to PMRpro]

So grateful to you and all who replied. I don't feel so isolated now. Best wishes to you and everyone dealing with this disease.

[Gossiplady]

Hi christie48! Yes, I too have exactly the same exaggerated feelings during a taper. No pain, just brain having a tantrum. Today is a good day, yesterday was mental hell and I go to bed and sleep. Maybe not the right way to overcome this. I also read my kindle and watch dvds like “last of the summer wine” so that it takes my brain onto a different channel. I am doing an almost stop taper and think this time I will just repeat and repeat each week. Slowly we will get there.

[christi48 in reply to Gossiplady]

Thank you so much to you and everyone else who took the time to respond. The support and understanding are so appreciated!