Anxiety whilst reducing: Has anyone experianced... - PMRGCAuk

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Anxiety whilst reducing

195536 profile image
30 Replies

Has anyone experianced feelings of anxiety and churning stomach when reducing below 5.5mg of Preds? Is the reason for this that my adrenal glands start to produce too much adrenaline below this point. Earlier this year I managed to reduce to 3.5mg without the anxiety attacks, but found that I was in so much pain that I gradually had to increase to 5.5mg to feel better. No when I try to reduce the anxiety returns within a few days.

Has anyone got any ideas.

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195536
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30 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

My view would be that your Adrenals are not fully functioning as yet and are probably only topping up the Pred dose to what your body would normal produce. (approx to 7.5mg Pred).

So in essence you have not enough adrenaline rather than too much. Anxiety can be a symptom of adrenal insufficiency.

I guess you are reducing by only 0.5mg a time, but are you using slow taper as well - if not it might help - this is just one of many -

healthunlocked.com/pmrgcauk...

195536 profile image
195536 in reply toDorsetLady

hi. thanks for your fast reply. I am reducing by 0.5mg per month. was doing ok until 4weeks ago when the anxiety started. I am seeing my rheumatologist on thurs. he expects me to be down to 3.5mg of preds but am now still on 5.5mg. should I ask to see an endocronoligist?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to195536

Your choice, but unless you are having a lot of problems probably not necessary as yet.

You could discuss with Rheumy at next appointment, but I think you will need to go back to GP to get a referral.

Are you sure your anxiety is not related to the fact you haven’t reduced as fast as your Rheumy would like? Or something else not related to PMR?

If your problem is adrenals I would expect fatigue to be the biggest problem followed by dizziness and nausea..

195536 profile image
195536 in reply toDorsetLady

thanks for your advice.

Pollyanna16 profile image
Pollyanna16 in reply to195536

My Rheumy referred me to the Endocrinologist for suspected adrenal suppression.

PMRpro profile image
PMRproAmbassador

Your adrenal glands are unlikely to produce too much adrenaline - there is a feedback system in the body to make sure your body produces what it needs and no more. However, as it comes back into use as the pred is reduced it may swing about a bit. As DL has explained, it is more likely to be due to not quite enough.

Start here....then ask questions.. turn your sound up!

youtu.be/QAeBKRaNri0

PMRpro profile image
PMRproAmbassador

This is an interesting read:

en.wikibooks.org/wiki/Demys...

and this

endocrineweb.com/endocrinol...

HeronNS profile image
HeronNS

If it's any consolation I think this is a fairly common reaction and in my experience it doesn't last more than a few weeks (like about three weeks, not months). Provided your PMR symptoms are still well controlled and it's only extra unexplained anxiety you experience, carry on with your slow taper and your body will soon grow accustomed to the lowering of the pred dose and start to produce more of its own hormones.

PMRpro profile image
PMRproAmbassador

In a way, But while you are still taking pred the feedback system senses there is a corticosteroid present so no more need be made.

I've likened it to having central heating and a woodburning stove in the room where the boiler thermostat is. As long as the woodburning stove is heating the room enough the boilder remains inactive - only when the fire goes out and the room cools down is it required and springs into action.

HeronNS profile image
HeronNS

I don't really know but it seems to me that the fact we get this temporary reaction at a dose where you'd expect the adrenals to be waking up (I've heard it happen as high as 10 mg, and as low as 3, most often around 7 or 8) means it is the adrenals stirring. So, yes, if you get an anxiety reaction on a high dose of pred it must be the pred (a recognised side effect). At the low dose, one's own body.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

It does for a some- for others it tends to cause the opposite - a feeling of euphoria.

For me it was the latter - but as you discovered - as you

a. get lower, and b. body becomes more accustomed to drug whatever it causes seems to ease off.

Hi Susiquew

When we first take Prednisolone (for any reason) it’s on top of our own Cortisol that’s being made normally.

Pred is usually given for inflammation, like we have in PMR/GCA but it can be given for many reasons such as Asthma/Chest Infection as what we are producing naturally isn’t enough to tame the inflammation.

If, like in the case of PMR/GCA we are on it long term, after about three weeks it spots we are getting a regular dose, so the Adrenal Glands just don’t bother making any Cortisol.....

When we are on a high dose, say from 30mg it’s more than our body is use to so it can make you high, twitchy with racing thoughts etc, some people adapt quite readily but for others it can be an issue.

But now you are back down to 5mg it won’t be an issue for you.

Kind Regards

MrsN

PMRpro profile image
PMRproAmbassador

The body doesn't differentiate between different sorts of corticosteroid - whether it is natural in the form of cortisol or artificial in the form of pred. It just knows there is plenty of the stuff it needs and doesn;t make more. I'm not sure about the mechanism - and haven't time at present to look it up, don;t even know if anyone knows!

Woodburners are ace - but do need to be good ones or you contribute to small particles in the atmosphere! We have one, just in case, but rarely use it as it is far too efficient in our small flat and we have to open the windows to cool down, even at minus 15C in the winter!

PMRpro profile image
PMRproAmbassador

Depends how big your room is - my cousin has one, they love it.

🤣🤣🤣 but I am a part visual learner.

No problems.

195536 profile image
195536

so glad that I raised the question of anxiety. it really helps to know that others know how it feels and share their knowledge and support. thanks,

YuliK profile image
YuliK

My rheumatologist told me, that the longer I was on Prednisone, then it takes more time for the adrenal glands to kick in when I get to 5mg.

YuliK

fmkkm profile image
fmkkm

Hi there,

This past year I have had rare days of wicked panic/anxiety attacks. I have never had this sensation before so I am sure it is related to adrenal function. I have been unsuccessful getting below 4/3.5. Without a specific blood test on that day we can’t state for certain which adrenal function is triggering the attacks because the days of the attacks are few. I read the references supplied by PMRpro with interest. I had not considered adrenaline as the culprit but it does seem possible that these crashes are due to a drop in adrenaline after an initial adrenaline rush.

If I was reading it correctly it was surprising to me that constantly increasing adrenaline keeps cortisol rising? On a light note then-should I take up hang gliding to get my normal cortisol production moving😂

in reply tofmkkm

Solo free climbing would be my fight or flight anxiety overkill.

youtu.be/3-wjmIFlnNo

fmkkm profile image
fmkkm in reply to

That was AMAZING!

in reply tofmkkm

There's a Netflix film called the dawn wall about another kid climbing el capitan too. Scares me but I have to watch them.

PMRpro profile image
PMRproAmbassador in reply to

Even the small kids do it in halls here. Almost all villages have a least a small one! My friend's son in Germany climbed for Germany I think. No accounting for taste!!

in reply toPMRpro

I climbed when I was very young..teens. And did a lot of scrambling into my 30s....skye for example. But no head for height any more.

Jackoh profile image
Jackoh in reply to

Wow!!

bunnymom profile image
bunnymom

I almost always notice anxiety when I first reduce. I have found CBD oil to help. Without thc. I just use 4 drops under my tongue as needed. Anxiety tends to come and go for several days and then settle. Also my mood can get dark but

then it lifts.

3 years 7 months PMR 6.5/6

daworm profile image
daworm in reply tobunnymom

yup...same...I also take eatables but there may be little THC involved also...I never could find a proper dose with CBD, the information on it is all over the place as far as dosage, its sort of expensive to keep experimenting...my caramels work great...small dosage..

bunnymom profile image
bunnymom in reply todaworm

I agree. I tried it for inflammation but realized it only really helped anxiety accidentally. Think there is future promise but it's not there yet. And it's expensive.

daworm profile image
daworm

I'm having this same issue right now...slooowly tapering and down to 3 1/2mg....seems more anxiety creeping in...just another step in the process I assume...every step brings something new...if its because my adrenals are working I'm all for it...

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