3mg and panic feelings

[Maggie1313]

Good morning all a wee update on how my reduction is going. I have been on 3mg for last 6 weeks. On the advice here i waiting to make sure it was not a flare . Symptoms I am suffering while at 3mg fatigue / physical weakness / nausea Red patched Rash on upper body , But worse off all is the anxiety and panic feeling that comes out of the blue day and night and has got worse in last 10days. Does anyone else suffer these symptoms. Could this be my adrenal glands trying to work again. I want to reduce down tomorrow by 1/2mg and was wondering if I should keep with the slow reduction or just take the 2 1/2mg from tomorrow and no tapering. Would really appreciate any advice you can give as I’m on my own and sometimes think I am going mad 😢

[SheffieldJane]

A combo of withdrawal and Adrenaline wobbles do cause this. I have had waves of horrible anxiety myself. It maybe that the doctor could prescribe an anti anxiety med. temporarily. I sometimes find that an ordinary painkiller can ease this rotten feeling. Maybe even Valerian or a Chamomile Tea. I am advising myself as well. I wish I was at 3 mgs - magic number.

[Maggie1313 in reply to SheffieldJane]

thank you SL , I don’t want to take any prescribed drugs for the anxiety as could cause me another problem 🥴 but will try ordinary painkillers and calamine tea.

[PMRpro Ambassador in reply to Maggie1313]

I don't recommend calamine tea - it would taste most peculiar Make sure it is chamomile ...

[Maggie1313 in reply to PMRpro]

hello PMRpro can you please tell me what the DSNS method is 🤔😊

[Maggie1313 in reply to Maggie1313]

sorry PMRpro is that the method I am on :

APER (5 weeks);Week 1 -Sun, Thurs new dose –Mon, Tues, Wed, Fri, Sat old doseWeek 2 -Sun, Tues, Thurs new dose -Mon, Wed, Fri, Sat old doseWeek 3 -Sun, Tues, Wed, Thurs new dose -Mon, Fri, Sat old doseWeek 4-Sun, Tues, Wed, Thurs, Sat new dose -Mon, Fri old doseWeek 5 -Every day new dose

Or is it a different method I can’t remember what you called the one I’m on 🤔🥴😊

[PMRpro Ambassador in reply to Maggie1313]

That looks more like DorsetLady's slowed taper. DSNS is Dead Slow Nearly Stop and isn't based on weeks but originally over a whole month where you take the new dose on one day and then the old dose for a few days before the new dose again, YOu always reduce the number of old dose days between the days of new dose so they get closer together.

[Maggie1313 in reply to PMRpro]

thank you so much for explaining can you send me the link for the DSNS method please so my Daughter can understand what I am talking about 🙏 😊

[PMRpro Ambassador in reply to Maggie1313]

All the stuff about tapering is under Tapering in the FAQs - and the link is at the top of every thread, just below the title post:

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[Maggie1313 in reply to PMRpro]

thank you so much PMRpro 🙏 and to all that replied, Reassuring me and helping me understand all that is going on is not in my head . A very big thank you 😘

[Thelmarina in reply to PMRpro]

😂 Could help with chicken pox though?

[PMRpro Ambassador in reply to Thelmarina]

But only externally!

[Maggie1313 in reply to PMRpro]

morning PMRpro was that last massage for me as I don’t understand it:

But only externally?🤔

[PMRpro Ambassador in reply to Maggie1313]

If you look it says it was to Thelmarina and her comment about calamine working for chicken pox. It always says on a reply who it is to if it is not the originator of the thread.

[Maggie1313 in reply to PMRpro]

so sorry PMRpro I did not know that. 🥴😊

[PMRpro Ambassador in reply to Maggie1313]

No problem

[Thelmarina in reply to PMRpro]

🤣

[DorsetLady PMRGCAuk volunteer]

Typical adrenal insufficiency symptom —- and maybe getting to lower does as well… and no don’t drop in one go… that’s likely to make you feel worse IMHO.

The slower plans will help both the adrenals and your illness, and I’d be inclined to stick at 3mg for a couple more weeks, and give the adrenals a chance to catch up. But really it’s just a matter of time, slow taper, small decreases and patience.

Probably read this - but in case you haven’t - healthunlocked.com/pmrgcauk...

[Maggie1313 in reply to DorsetLady]

hello DL and thank you, what does IMHO mean. It is good to feel reassured these are withdrawal symptoms and that I’m not going crazy as when the panic hits I feel I am 🥴

[DorsetLady PMRGCAuk volunteer in reply to Maggie1313]

in my humble opinion 😊…

[Maggie1313]

🤣🤣thank you 😊

[herdysheep]

This feeling of going crazy is not fair after all the time of learning to manage pmr/gca, eventually almost recognising what is what with our list of symptoms and then the adrenal stuff comes along. Hang on in there. Very slow taper at best and remember you are not alone. There is always someone here.

[Maggie1313]

thank you 🙏😊

[SnazzyD]

Sounds like what I had when the adrenal glands weren’t working properly. When they are, you don’t get symptoms. The bouts of anxiety were a pain. As for reducing it needed very slow introductions of a drop of 0.5mg over weeks to cope. If one’s life is stressful or you are busy, it can make one feel worse too.

[Maggie1313 in reply to SnazzyD]

thank you SnazzyD at least knowing anxiety is a symptom relieves some of the stress. Do you have to be off the steroids before the adrenal glands go back to normal, or could it happen as I reduce 🤔😊

[SnazzyD in reply to Maggie1313]

ideally it’ll come back as you reduce. Any time the Pred doesn’t cover what cortisol you need the body should pick that information up and produce its own. The trouble you are having is that the glands are doing something but not quite enough. The idea is that as your body is experiencing a lack of cortisol time after time, the memo will get through more and more. Meanwhile you are feeling it until normal service is resumed.

[Maggie1313 in reply to SnazzyD]

thank you so much SnazzyD 😊

[SnazzyD in reply to Maggie1313]

I hasten to add that you need to balance challenging your body with low levels of Pred with going too low too quickly and causing an adrenal crisis. Feeling rubbish is one thing and can be par for the course, but feeling ill and deeply not well may mean you need to slow down, either by literally slowing down or taking a little more Pred to recover.

[Maggie1313 in reply to SnazzyD]

thank you again SnazzyD will do 🙏

[piglette]

Looks like adrenal insufficiency and the deathly fatigue are sniffing round!

[Maggie1313 in reply to piglette]

thank you 🙏😊

[Devoid]

Hi I really struggled at 3mg but due to a mix up between the rheumatologist and endocrinologist I got really fed up and just thought I’d give lower a go , felt much better at 2mg and have been on zero since Easter. I’ve been here before so not putting the flags out just yet. Still on weekly actemera injection.

[Maggie1313 in reply to Devoid]

hello Devoid you said you struggled @3mg may I ask what were you symptoms at 3mg and how better did you feel at 2mg I know no two people are the same but I love to hear a nice positive feedback like yours. 🙏😊

[Devoid in reply to Maggie1313]

At 3mg I had dreadful fatigue and generally didn’t feel well, could manage to do very little, particularly walking which really effects my well-being. Had no further hiccups below 3

[Maggie1313 in reply to Devoid]

thank you so much Devoid really appreciate your reply hopefully I’ll be where you are someday 🙏😊