strange reaction to my Prednisone after all these years. Highly agitated!!!

[bluegirl7]

hello everyone thank you for helping me recently with the issues I’m having with pain in my ankles and in my feet I have settled on taking 5 mg of prednisone which is an increase from where I had been down to 1 mg in the spring and summer so it has been hard for me to go higher because of stomach issues but I am managing on 5 mg as I was directed by my rheumatologist to try 7.5 but that

Couldn’t happen because of stomach issues so I have been on 5 mg for a couple of weeks two weeks maybe and I am having a strange reaction I take the 5 mg in the morning with yogurt with my breakfast and within an hour my heart is racing and I am shaky and I am agitated and angry and short tempered and it’s not like me at all and I keep racing and not thinking like myself and I am getting lots of sweats now when I take my blood pressure it’s not high and my heart rates not high and yet I am racing and shaking and it happens every day and has been now Getting worse and the only other thing that happened was I have been given shots of cortisone in my toes and one in my ankle last week was the ankle and this week the toes and I am wondering if it’s all accumulating and I am getting some kind of strange reaction I don’t know if it’s too much steroid in my system certainly when I was on high doses of prednisone like 15 and 12 I didn’t have this kind of reaction at all so I’m wondering is it because my adrenals are working and now this is too much cortisol I really can’t explain it because this is not my personality and my husband says why what’s going on this is so unlike you and you’re really racing and shouting and what’s happening and then after a few hours I settle down a bit but then I’m calmer but I am still not sleeping very well so still very keyed up at night as well

I think the 5 mg are helping my ankles which seem to be less painful but maybe it was the shot last week not sure but I don’t think so anyway I don’t know what this is but has anybody who has had to go back up with the prednisone experienced anything like this I appreciate your help as always I just don’t like feeling like a lunatic thank you

[SnazzyD]

I wonder if you are getting extra systemic input of cortisone with the extra local injections on top of your 5mg. If you had too much artificial steroid on board, your adrenals normally shut down. The timing sounds about right. Might be worth asking your doctor how long it should take to die down or if there is another factor going on. You could ask a pharmacist too.

[bluegirl7 in reply to SnazzyD]

Thank you Snazzy. I don’t know how to reply to more than one person. Pls see my reply to PMRpro.

[PMRpro Ambassador]

The only think I can think of is that it is the combined effect - if it is it should fade over a couple of weeks.

[bluegirl7 in reply to PMRpro]

Thank you and Snazzy. That makes sense and I wondered about that. Stupidly I thought the injection meds would stay near the site. The neuromas near the toes had 2 big shots I believe. The issue is I can’t take my 5 mg. I took none today and I am still racing from yesterday. (At least I am not yelling and carrying on today!) When I restart what dose? I had been at 1 last spring and summer and then 2. I worked up to 5 since the foot ankle drama started. I called my rheumatologist He sent me to other docs since ankle and foot thing has been so baffling. I am waiting for a callback but honestly the group here is always so helpful!!!

[PMRpro Ambassador in reply to bluegirl7]

I'm not sure how much gets into the system but some does briefly and then tails off. Difficult to say - how long have you been back at 5mg? Ah yes - 2 weeks. You are probably OK for a few days at least and possibly longer. Just keep some pred handy to take if you feel unwell as if you have not enough pred. And then try the 2mg again - maybe you don't NEED the 5mg any more.

[bluegirl7 in reply to PMRpro]

Now at this time of day 6 pm I crash and feel extremely tired. But then late at night I wake up again and have trouble getting to sleep and wake up jittery. I hope this cycle ends soon. Thank you again. If I don’t feel jittery tomorrow I will try 2 mg.

[PMRpro Ambassador in reply to bluegirl7]

Have you tried having a planned rest sooner than you expect to crash? I know we used to suggest that - by resting BEFORE you crash, you make it less of an event and the evening is more useful/pleasant.

[SnazzyD in reply to PMRpro]

I wonder if it’s because more than one injection has been placed in small joints/areas and not big ones like hip joint or shoulder. Perhaps leakage out is more likely because there’s nowhere for it to go so much.

[PMRpro Ambassador in reply to SnazzyD]

Plus there are a few injections at the same sort of time. A single injection contributes x to the systemic level - if they do 2 or 3 in different places, there will be 2x or 3x added to the system. And it might not be as steady as the release from the deep i.m. ones used to manage PMR.

[bluegirl7]

Hi PMRPro and Snazzy. I am so grateful to both of you. I think what you say about injections make sense. The two in the toes probably do have a slower way they distribute. I note that the toe pain has been gone which it never usually is. The ankles are another story but the one without the injection is the one that is worse. I will wait it out

But what PMRPro said about resting is my problem always. I just keep going even when in pain or uncomfortable. I see that yesterday I was still the energizer bunny instead of trying to quiet myself and my body. As a result my heart was pounding all night waking me up. Eating a big meal of vegetable stew that I made yesterday did not help as well!!! I am resting in bed now before I work today which is a late start today luckily.

Thank you both!!!!No response from rheumatologist yet. But tomorrow we see our Primary for my husbands ongoing issues and he is my doc too and I will ask him about this.

[PMRpro Ambassador in reply to bluegirl7]

"I just keep going even when in pain or uncomfortable."

And there, I'm sure, is a clue. Our poor bodies do get abused by us being inconsiderate of them! Pain is there for a reason: it is the only way the body has to say to us that we are causing even more damage and please could we give it a break, And as I have said in my pacing post, often giving in before we are nearly broken gives us a second change as we can heal a bit and then have more good time.

[Karendeena]

I was like this on prednisolone from the very start and it got worse as time went on. My GP wanted me off it as she said it was affecting my mental wellbeing. She tapered me too fast and I became quite ill

Visited a rheumatologist who put me back on 5mg with a very slow taper

My moods remained erratic, severe irritability, anger, jittery, couldn't sleep, interrupted sleep, total change of personality.

I finished the taper in January but the symptoms persist. I find it difficult to explain really but it definitely isn't me. No answer to it, just hope one day I may feel normal again

[bluegirl7 in reply to Karendeena]

Thank you. Luckily I have not been like this on Pred for the last 41/2 years only recently. I have to believe it has been the additional injections that created this reaction and you describe it well. Maybe your body holds onto it somehow? I have not taken any the last few days and I think it is settling down. Tomorrow I will try 2 mg and see if I am ok. I do have PMR pains so I want to resume. Will see. I hope they can give you something else without these awful side effects. And they should recheck your diagnosis. Wishing you well.

[piglette in reply to Karendeena]

Psychological side effects can exist for up to a couple of months or so after stopping apparently.