Anxiety again?

[Greytree]

I have gone from 4 mg of prednisone to 3.5 and am experiencing mild anxiety and depression. I was on 4 for a month. Am also getting monthly Actemra infusions and have been since last fall. I don’t know why my body/mind are reacting as they are. I also don’t know why my legs and arms still feel tight and tired, which how they became when I came down with PMR more than 2 years ago. Any thoughts?

[SheffieldJane]

You may find that 4 mgs is your dose for now. I get the sinking feelings when I taper, but I know that they are not me. A repeat of early physical symptoms is a red flag for me.

[Greytree in reply to SheffieldJane]

It's odd to me because I have the still have the same physical symptoms from the onset of PMR. They are somewhat milder than I've had from the start or maybe I have just grown accustomed to them. Heavy legs and arms. Unable to walk well except on flat land. Limited distance.

[Shaza123 in reply to Greytree]

that’s just how I feel some days I feel absolutely exhausted doing not much at all ie just a small trip to the local shops. Makes you feel so old😢 hope your ok

[Greytree in reply to Shaza123]

Thanks. There are good things in each day - little things - like birds singing, frogs croaking, a laugh with an old friend over the phone. I need to learn to sustain the feeling those give me and not succumb to the anxiety….

[DorsetLady PMRGCAuk volunteer]

Might be slightly too low a dose of Pred - but anxiety could be adrenals struggling - typical sign -

healthunlocked.com/pmrgcauk...

[Greytree in reply to DorsetLady]

Thanks. I read the info. Sounds like the basal cortisol test may be needed to figure it out.

[DorsetLady PMRGCAuk volunteer in reply to Greytree]

That only tells you that the adrenals are capable of working -not how well they actually are -but it’s worth getting them checked,

[Greytree in reply to DorsetLady]

Aha. Thanks. Will wait and see how it goes.

[PMRpro Ambassador in reply to Greytree]

At 4mg the basal cortisol may not be accurate - that is plenty to suppress the natural production of cortisol, It sounds to me as if you are on the cusp of enough to manage the PMR and occasionally it isn't enough. I often find that walking up a slope is a bit much, on the flat is fine and I think there are quite a few on the forum who will say much the same,

[Greytree in reply to PMRpro]

Thanks. Very helpful.

[Shaza123 in reply to PMRpro]

absolutely

[Shaza123 in reply to PMRpro]

I can relate to the walking up slopes

[SnazzyD]

When my adrenal function was still below par I had the same; easily feeling overwhelmed for no good reason. It got better as their function returned.

[Greytree in reply to SnazzyD]

Can't figure out if I need to gut it out or take anti-anxiety pills/antidepressant. Do folks do that?

[DorsetLady PMRGCAuk volunteer in reply to Greytree]

Some do, depends how severe it is - but (personal opinion only) I’d prefer not to… just give the adrenals a chance.

[Greytree in reply to DorsetLady]

Thanks. Just as glad not to have another chemical in my poor body!

[Shaza123 in reply to Greytree]

I’m on them don’t know how I’d cope otherwise

[Greytree in reply to Shaza123]

I have a bottle of them and will turn to them if I can’t gut it out. I have done that before and it was helpful.

[piglette]

Sounds like your adrenal glands are griping at being woken up!

[Greytree in reply to piglette]

This never gets easy - or clear! Thanks.

[piglette in reply to Greytree]

They do cheer up eventually.

[Greytree in reply to piglette]

I will try to cheer up ahead of them. (-: Thanks.

[piglette in reply to Greytree]

😀😀😀

[Abcd123455]

Hi, I’m now down to 3mg (started 15mg about Nov 2021) and feel really wobbly all the time. Slightest thing upsets me/makes me tearful. Trying really hard to just wait and hope it gets better. Hopefully it’ll improve for you too x

[Francesbarbara in reply to Abcd123455]

I really feel for you, as your description fits me perfectly. I'm on 2.5 mg and dizziness, extreme fatigue and emotions are all over the place and are not comfortable to live with. I am starting to feel this is the worst part of the whole journey but I must remember that I am lucky that I have no pain. Trying, and at the moment, failing, to be patient.

[Greytree in reply to Francesbarbara]

At least you (and me) are trying!

[Francesbarbara in reply to Greytree]

At the moment my hsband thinks I am very trying.....

[Greytree in reply to Francesbarbara]

I don't have a husband to tell me I'm trying but I want to get a dog, which might find me so.

[Francesbarbara in reply to Greytree]

He/she will love you unconditionally....

[Greytree in reply to Francesbarbara]

That would be (will be) lovely!

[Gossiplady in reply to Francesbarbara]

hi Francesbarbara! Yes I found at around 3mgs I had the same. Wore vertigo bands to stop dizziness, fatigue is the worst, but as I am now down to 1mg all side effects gone. Legs improving slowly. But feeling more like my old self. Take care and as I mentors on this forum say, take it slowly.

[Francesbarbara in reply to Gossiplady]

Thank you, Gossiplady, I have never heard of vertigo bands and am very interested. I see there are various bands on Amazon but any more info from you would be very helpful. Agree that fatigue is the worst and I find I can try to be active either in morning or afternoon - not in both. Going soooo slow with tiny drops of 0.25g over 2-4 weeks.

[Gossiplady in reply to Francesbarbara]

hi Francesbarbara, sorry, brain fog, they are called Motion Sickness Patches from Mr. A of course. 14 in a box. I put behind ears. Works well. Also if dizziness is really bad I always keep Stugeron 15 from the chemists in the house, even keep a packet in the car. They are for travel sickness but my doctor told me to get some. Keep smiling!

[Francesbarbara in reply to Gossiplady]

Many thanks - will give these a try. Amazing what we learn from this exchange of info.

[Gossiplady in reply to Francesbarbara]

hi Francesbarbara! Yes I agree. Last week I had a phone appt with my clinical pharmacist at my surgery and found I was lecturing her on my medications! All because of our forum!

[Greytree in reply to Gossiplady]

as Francesbarbara said, please tell more about which Vertigo band you have found helpful. Thanks.

[Gossiplady in reply to Greytree]

hi Greytree! Motion sickness patches from Mr. a online. Put behind ears. Work well for me. If really bad I use, Stugeron 15 from the chemist. Recommended by my doctor. I just tell the chemist they are for travelling, otherwise you know you are interrogated for 10 minutes. Keep strong!

[Greytree in reply to Gossiplady]

Thanks!

[Greytree in reply to Abcd123455]

Thanks. Our paths on steroids are similar. Only you have made it to 3mg vs 3.5mg. We can both keep our fingers crossed…

[Animalover65]

Hi, I do a weekly hourly dance class but I take my ramblers walking stick for the 10 minute walk to the car as I sometimes feel a bit dizzy. ( I am on 2 mg of pred) Also the heat and especially humidity heat means I need to rest more. Strangely enough I feel more balanced when doing dance steps.

I also try to eat healthily and incorporate fermented food into my diet. Although I do have chocolate and wine sometimes! I think the reduction in pred does cause some anxiety due to physical reasons and it does pass. However I find its possible to get into a loop - feelings of anxiety cause worrying thoughts. I find questioning those worrying thoughts helpful, seeking the wisdom from this lovely group and planning positive things is very helpful

[Temoral in reply to Animalover65]

This pattern is so true....making a list of all the positives in life , and reading them back to yourself may help to lift your spirits a little...I find it can be so easy to be sucked in to the negative...especially when the news comes on....

[Animalover65 in reply to Temoral]

Definatley, we need a TV or radio that only reports on good news for a bit of light relief. I am seeking out some happy novels to escape into and relax.

[Temoral in reply to Animalover65]

I also have a quarterly mag called Positive News....fab for concentrating on good things that are happeninging locally and globally....super read..

[Animalover65 in reply to Temoral]

Thank you ,that sounds interesting.

[Greytree in reply to Temoral]

Thanks. I have now signed up for the newsletter.

[Greytree in reply to Temoral]

Making a list of the good things is a great way to focus where one should focus! Will try that.

[Greytree in reply to Animalover65]

”questioning those worrying thoughts” I like that and will try it. Yes, it’s a loop. I do a lot of deep breathing to try to settle myself.

[Animalover65]

Hope all goes well. x

[Greytree in reply to Animalover65]

Thanks!

[Karenjaninaz]

When I was at those low doses I could only drop 1/4 mgm. Gentler on my body. Dropping more than 10% was not recommended .

[Greytree in reply to Karenjaninaz]

Good point! It is danged hard to split up the tablets. But I should have gone 4 to 3.75 instead of 4 to 3.5. Dang.

[Gossiplady in reply to Greytree]

hi Greytree! Do you use a pill cutter? Online at the usual MR. A. Xx

[Greytree in reply to Gossiplady]

Thanks. I did get one awhile back that I forget about. Will pull it out and actually use it!

[Greytree]

I cracked today and took an extra 1/2 mg of prednisone a few hours after my regular dose of 3.5. Have had too much stuff going on around me. Feeling much better this afternoon. Maybe (just maybe) I'll try 3.75 tomorrow and stick with that a bit. Not good at decisions! Everyone here has been so helpful. Thanks to all. Any other comments are more than welcome.