Anxiety: Hi, heres one for the longtimers...during... - PMRGCAuk

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Anxiety

Purplecrow
Purplecrow

Hi, heres one for the longtimers...during the past few weeks, I have successfully tapered from 7 mg to 6 mg, using DSNS. Been at 6mg. for 10 days.

In last week, I have noticed my feelings of anxiety have become more frequent, and generally related to very small issues. For example, a friend called to say she was coming into town, and would like a short visit. Love this friend...no cause for stress. Another example, waiting in the gas line for a pump to come available, I noticed the jittery uncomfortable feeling again.

On the bright side, no PMR pain or other withdrawal/flare symptoms.👏🏼

My guess, this is adrenal function, but not very happy about it. Any words of wisdom from those of you who have gone before???

Thanks, Jerri

Dx: PMR Oct 2013

54 Replies

I went through this for a short period of time, maybe a couple of weeks, I can't remember, when I was at about 7 mg. Strange feeling. Rationally you know there is nothing to panic about, and yet your body is telling you otherwise. I suspect it's something to do with the adrenal glands starting to kick in again, so it's probably a good sign. Cortisol is, after all, the fight or flight hormone, so our body is showing signs that it's trying to adjust the levels of cortisol again, after the pred-induced hiatus. I agree, it's very disturbing until you recognize this is what's happening.

Well said, Heron :-)

Purplecrow
Purplecrow in reply to HeronNS

🙏🏽 J

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi Purplecrow,

This feeling has been mentioned before at around this level of Pred, and yes most likely due to your adrenal glands not yet functioning correctly. One way to get them going is taking even smaller steps when tapering - say 0,5mg a time. I know that sounds as if it’s going to take for ever, but if it helps why not? At this level of Pred you aren’t getting any side effects, so there’s no rush to get lower.

This link may help -although it doesn’t specifically mention anxiety as being part of Adrenal inadequacy- it might just reinforce the way forward.

healthunlocked.com/pmrgcauk...

Thanks to you for the quick response. i know u are correct...its just reassuring to hear it from someone who has been this way before😘

Hi DL, I am at 7.5mg. Are there side effects at this level or am I moving into the few side effects category? Thanks, Sue.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Suedeshayes

Hi,

You shouldn’t get any serious side effects, like heightened blood pressure, blood glucose or cataracts.

As I implied to Purplecrow any other issues are likely to be Adrenal related - fatigue, dizziness, anxiety etc.

7,5mg is about the average level of cortisol your own body would produce normally, so there shouldn’t be side effects. The only problems you may have is if your Adrenal glands don’t get the message that they need to start waking up again. But that’s a whole new story. 😏

Thank you. Kindest regards, Sue

Sandy1947
Sandy1947 in reply to DorsetLady

My endocrinologist said adrenal glands don’t produce cortisol until you are off Pred. I’m at 6 mg and still anxious and a bit edgy over nothing! I think these are just exaggerated personality traits that were always there.

piglette
piglette in reply to Sandy1947

Hi Sandy, are you sure that is what the endocrinologist meant as it is total rubbish? The body does not have enough pred from the steroids at 6mg and so has to start producing cortisol. If you take only 1mg of steroids and so have just 1mg from them and nothing from the adrenal glands you would be in trouble you need around 7.5mg of cortisol a day.

Sandy1947
Sandy1947 in reply to piglette

I asked her to repeat it which she did. It certainly didn’t sound like what I’ve learned from forum friends.

PMRpro
PMRproAmbassador in reply to Sandy1947

Well he's wrong! They have to start producing some cortisol while you are reducing to zero pred or you would become extremely ill. They may not be doing it perfectly - but they ARE producing some.

Sandy1947
Sandy1947 in reply to PMRpro

Thanks. She is my osteoporosis Dr. she better stick to bones!

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Sandy1947

Won’t add any further comments to piglette’s and PMRpro’s!

Sandy1947
Sandy1947 in reply to DorsetLady

Thanks. As an aside, I am doing OK using your reduction method starting at week 2. I had stress fractures in both feet, still have pain, Dr. says I have inflamed metatarsals, wanted to give me a shot, I declined and got orthotics. I feel better because I’m afraid of the shot.

piglette
piglette in reply to Sandy1947

There was a program on TV yesterday and someone was wanting a shot for their feet and the doctor said orthotics were much better as they got your body standing correctly.

Hi jerri :-)

I can relate to this un-natural 'jittery / jangly / frazzled' feeling too, whilst on or reducing the Preds. Yep, it can be quite confusing.

I think DL and HeronNS have hit the nail on the head. At the same time that the Preds control the worst of the physical symptoms of PMR, they also can bring side-effects in terms of Brain function including (sic) cognitive disturbance, emotional / psychological mood-swings etc - and possibly more so in some PMR Patients who a pre-disposition to these things for whatever reason. The 'magic' Preds are known to be a very effective drug for managing physical PMR symptoms - but just look at the long list of other possible side-effects on the packet!

Perhaps the most important thing is that you seem to be making some sense of Cause and Effect with Pred tapering - and with the help and support of others in this community?

Best wishes - and try to keep smiling on the often un-predictable and confusing PMR / Pred journey.

'Uncle' MB :-)

🙏🏽

I’d hate to be a nail living in Dorset - DL would hit me on the head every time...!

Yes - everything points to it being related to adrenal glands - interesting to know when it passes.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Rokerman

Sometimes miss.....not always Dead Eyed Dick ...with the emphasis on “EYE”, not eyes 🤨

Rokerman
Rokerman in reply to DorsetLady

Well it ain’t wot you deserve DL - but we benefit from your enhanced acuity in what remains! Keep it up!

I’ve posted about my anxiety, emotionality, indecisiveness and general dismay watching myself get flummoxed over little things in the transition from 7-6-5.

Haven’t had flares, both body and blood tests affirm.

I’ve been at this level for about a month and I haven’t felt that same intensity for a while now. Still a few moments but nothing like it was. It helps, I suppose, being on vacation in Puerto Vallarta with family, warm and humid, ocean and pool steps from the door. :).

Sandy1947
Sandy1947 in reply to Hindags

Anxiety on vacation isn’t possible!

I would recommend, de-stressing your life as much as possible. And don’t make any big decisions or even medium ones until you feel more stable.

Purplecrow
Purplecrow in reply to Hindags

Lucky me, I have a rock solid wife who keeps me pretty grounded. 40 years of practice,😆

Hidden
Hidden

The more I read about being on 9, 8, 7, 6 mg of Pred.... I'm thinking, I'll stay on 30!!!!! : o

Soraya_PMR
Soraya_PMR in reply to Hidden

Yeah! You’d think it’d get easier.....but NO! Just when you think you’ve got a handle on it, it all goes to hell in a handbasket.

Rimmy
Rimmy in reply to Hidden

Hi Melissa -i have noticed I get such feelings after a few days whenever I taper - even by 0.5mg usually every 2 weeks. But I'm still at 14.5mg - sitting here even longer than the 2 weeks this time as I'm a bit 'cranky' and 'on the cusp' to say the least. So I'm not sure this stuff IS just a product of those really 'low' doses - I think for me it has been there all along - but maybe 'some' of it (you know we 'sensitive' types) was ALWAYS there on and off - (LOL- in a rather 'unfunny' way !) ...

XX

Hidden
Hidden in reply to Rimmy

"Unfunny, for sure!!!! And yes, I consider myself a "sensitive type!" Always have been... I remember my paediatrician telling my Mom I was "high-strung," when I was about 10!! Hahahahahahahahaha.

powerwalk
powerwalk in reply to Hidden

High-strung - funny - you made me giggle!!!

So right!

I don’t know what to say that might help except me too! I think it is the unexpectedness of this reaction that kind of ambushed me. I am not troubled by PMR pain and stiffness, maybe some weakness in my arms and legs and an upset stomach. Low mood and anxiety about silly little things or maybe free floating anxiety that just lands on anything.

Had somebody said that you might feel jittery for a while at the Adrenal, trigger dose, I think I wouldn’t mind. I hope it means that the glands are cranking into life. I can completely empathise with how you feel about your dear friend coming - that would send me over the edge. Big hug my shaky friend, may it pass quickly.

Hidden
Hidden in reply to SheffieldJane

Jane, I really like the phrase "free floating anxiety" and description that it kind of just "lands." Perfect.

And as someone who has struggled with anxiety since the birth of my first daughter (40 years ago) I can so relate to what MB described as that "jittery, jangly, frazzled," feeling... It is definitely bad, manageable, most of the time. It's that overwhelming, extreme "PANIC" that takes hold of you and ignites that "fight/flight" instinct... Yikes, I wouldn't wish that on anybody! : O

powerwalk
powerwalk in reply to Hidden

Know what you mean - I'm panicking cos I'm panacking over things in work that I know inside out - but this weird stressed feeling comes over me like I won't be able to do it and its just all too much. Its very strange and upsetting.

PS Clearly I missed the helpful posts about this - my loss. At least you will know what it is mamici. 😳

Hidden
Hidden in reply to SheffieldJane

Yes, for sure. I have filed this away for future reference. I'm not sure I want to reduce any further... I'm doing okay on 32.5!

SheffieldJane
SheffieldJane in reply to Hidden

10 mgs was perfect for me. I felt well and almost normal. I walked a lot and looked after little Theo. Now the symptoms are hard to read - do I need more or less?

Unfortunately my Rheumatologist is away from work so I see a completely new person today. What’s the betting it’s 15 mins of must get off steroids and take Methotrexate to speed this along and it’s too soon for an Adrenal Function Test. A complete waste of a trip to Otley. Because no, no and oh!

Christophene47
Christophene47 in reply to Hidden

Never been at 32.5; never above 16 which seemed Goldilocks "just right", so don't know what I'm missing.

🙏🏽

I am at 5/6 and have been getting the creepy anxiety over nothing. I am now on some low dose meds to help. I probably hit the anxiety about at 9. My husband says I'm on edge. If I take full dose anxiety meds I'm tired. The rock and a hard place. We are always trying to figure it out aren't we.

Purplecrow
Purplecrow in reply to bunnymom

Yes, same here..its nice to know others have experienced this unpleasant little gift. Otherwise I feel pretty well. Hope you are near the end also.

Thanks, Jerri

Hidden
Hidden in reply to bunnymom

So meds to control the side-effects of meds... Oh goody! : (

PMRpro
PMRproAmbassador

I suspect it may simply be something to do with the changing dose - and some people are sensitive to it far sooner than others. because of the bioavailability the dose at which poor adrenal function kicks in will vary - probably from about 12-14mg/day for some people if they only absorb 50% of their dose. But every time you change the dose, other things in the body change too. The adrenal glands swing about in terms of amount of cortisol produced - so the fight or flight response may actually be hyper- rather than hypo- and so you get these jittery feelings. Just a theory...

Rimmy
Rimmy in reply to PMRpro

Surprised to hear poor natural adrenal function can be a problem at a dose as high as 14mg (which might explain some things for me) and this is interesting also as weight - body size generally as well as bioavailability must surely be a factor. At 5ft 9in and pretty 'solid' (aka a little overweight) I would obviously 'need' a higher dose to get the same effect as say a 5ft zero lightweight woman (I presume this must then be the case 'relatively speaking' for all of us re doses).

PMRpro
PMRproAmbassador in reply to Rimmy

I would think that is perfectly fair. A study in Italy found that 75% of PMR patients responded well within a month to 12.5mg/day pred. Best responses were seen in small women, least good in large men. Size does play a part.

Adrenal function is compromised at any dose above 10mg really - and since in a stressful situation you may need a really big spike of cortisol to cope well, that is likely to be absent. And you may feel wobbly - even though day-to-day you manage well.

Purplecrow
Purplecrow in reply to PMRpro

Hi, 'just a theory' hits it on the head. I think you are right...the response might be hyper as well as hypo. Fortunately, the moments are brief, and surely flighty... never know what will trigger them, but know they will soon be gone. ....

So, goal of the day...Carry on...👍 and see whats next...nearly Time for next .5 drop.🤪

You are probably right. In 2012, I figured out I had hyperparathyroidism from 2 clues; as I have a couple of thyroid nodules, advised to get an ultrasound every 1-2 years to be sure no changes in size. An astute radiologist wrote on my report, that she thought she was seeing a parathyroid adenoma. I also happened to remember that my blood calcium was high, which my GP attributed to calcium supplements.

I had forgotten all about the parathyroids from nursing school. Found a great website from the Norman Parathyroid Center in Tampa, FL. I had all symptoms, all of which we all have at some point or another. They offered a review of medical records for $3000 (free for Florida residents). I had my relevant records reviewed. Five days later, received a call from the reviewing surgeon. You are a candidate. If you would like to have the adenoma removed here, call surgery scheduling and gave me the

phone #.

My daughter came with me. My first husband had just died 6 weeks prior.There is no cure other than surgery , but to remove the offending gland which is robbing calcium from everywhere it needs to be, not just teeth and bones , and dumping it into the blood.

It took my body 15 months for all my biochemistry to come back into alignment with a normal calcium level. Upon discharge, surgeons made the point that no matter how fast, or how long it takes to get back to your normal self, you are "running with the pack." Those 15 months were not good, but I did recover completely and felt fine until this rarity fell on me.

Dr. Norman holds the patent on the minimally invasive surgical equipment and technique. People from all over the world go there,and the Norman Foundation will fund the operation for anyone who is uninsured or cannot afford it. It is a nuclear surgical procedure. The point being that everyone adjusts differently, and at different rates of speed. The same must be true with prednisone tapering and adrenal production adjustment.

PS And hyperparathyroidism can also make you crazy too. !!

PMRpro
PMRproAmbassador in reply to Christophene47

How very very interesting...

Morning

I got these strange feelings at this level. I put it down to waking adrenals and actually celebrated that they were waking. Also it was good to get feelings of excitement returning. I can remember these feelings returning when I reduced serotonin medication for depression in the 90s.

It is something to be celebrated!

That’s the attitude to have - regard it as one of the steps towards recovery. As I peel myself off the ceiling because a very noisy skip was delivered at 7 am. It sounded like it was in my room. Then the tap tap and whirr whirr of the builders begins. 😖

Thank you for the reminder that "the glass IS half full"!!!!!

Yes I get these feelings on changing a dose- just changing from 16 mg down to 15mg. Also before getting GCA got the brick wall fatigue at 11mg which made me think that for me I don't absorb all the Pred very well.

Oh I’ve just reduced to 7mg and felt a bit tearful and lost and my best friend in the world is suffering from depression so bad she

attending a mental health unit every day, she has lost so much weight I bullied her into letting me take her shopping, I practically had to force her into the car , we bumped into a friend who works in Benifits make up shop she dragged us in we had an hour of laughter tears and a full make over my Bessie said it was the best day she’s had in months , I felt so pleased to have my friend back for a little ,while there is a light at the end of this tunnel run to the light we can have a ball at the end,,,,,

Purplecrow
Purplecrow in reply to Lynnray

👏🏽👏🏽❣️

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