Niggles is my new word, thanks to my new-found sisters on this forum. I'm suspecting you will give me a new word for the horrendous emotional upheaval I'm experiencing on the new 21 mg dose of prednisone. It's been three days. I'm in a panic, super stressed out, cry easily, feel angry out of the blue, and can't think! I just can't think straight. I can't focus on reading, watching tele irritates me ( too stimulating). I'm pure joy to be around, I'm sure. (Sarcasm)
I get chest aches, sweats, can't sleep, and feel mad at my husband. He hasn't done anything.
Throw me a life line !
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Blurry62
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Oh dear, you sound like you’re in a real pickle. Can I ask, did you find this level of emotional effect on a previous reduction? Are you doing 0.5mg drops instead of 1mg? Has it settled in between drops?
I do remember having to avoid the tv unless it was something super bland.
What about 0.5mg drops, not 1mg, even if you really have to be on the same same schedule, just to make the steps smaller?
Speak to GP about some med help for sleeping in the worst of it. I find the strong antihistamine Phenergan helps but it is recommended for short term use only and you may need something stronger. Might be worth a try if a doc appt is not for a while.
I recognise all of this. It’s really horrible. I didn’t find a solution except a really regular routine including a 90 minute afternoon sleep and bed at 10 pm. I never learned how to think before I spoke. It didn’t last very long in such a full on way though. Poor you!
Badly, in batches. Apparently this is how we are designed to sleep. Someone told me that the 8 hour stretch was brought in with the Industrial revolution to make us more productive. At least I don’t work anymore. Due to erratic Adrenaline, I can be at my sparkling best at 3.30 am and I look forward to the afternoon nap. I try not to stress about it . The sleep pattern has changed for me over the course of PMR, I try to adapt with it. May it pass quickly.
Even in very early English literature is mentioned the "first sleep" and "second sleep," as though it were recognized that a person did not sleep straight through for 8 hours
This sounds familiar for sure. I had adopted the 'it is what it is' attitude regarding the timing of sleep; get up at 2 in the morning to clean or cook something before crashing again at 4-4:30. It isn't as easy to do right now.
I did sleep better last night. I made myself stay up until 9:30, and hopefully, that's what helped. I will test that out again this evening.
If you mean it makes the autoimmune system MORE active then it's not recommended for autoimmune diseases like PMR. If you are on anticoagulant meds it's not good as Chaga can cause blood thinning too. Personally I wouldn't take it, nor anything that claimed to "help" the immune system.
Ya. Pretty much leaning that way. But a phD herbal doc said chaga balances ... Rather than stimulates... the immune system. I've read every single view point imaginable on it and am not comfortable taking it at this point.
I agree it wouldn't be comfortable either. It has come up before as have several alternative/ complementary therapies. The notion that something is "natural" and therefore good for you is scary...arsenic is natural...cyanide is natural. 😱
Not specifically. Mushroom powder reputed to help the immune system. I don’t expect it would hurt anything much except your pocket. The treatment we are on suppresses our immune system because it is attacking itself. I wonder what, if anything, diet and supplements designed to build up the immune system do, if anything?
You sound miserable. I guess give it another day to see if it all settles down. Maybe go back to 23 or 24 for a couple days and then go back to 21. I hate to back up but if it’s just a couple days I have done it several times. Virtual hugs💗
Hi, hope you’re feeling better today. Sounds like most advice is leaning towards finding a way to get sleep and not treating it as flare related. I do remember the sleepless nights, a lot of nights I only managed 2-3 hours of poor quality sleep. This is when my nap habit took hold. I also have no problem taking a couple extra mg for a day if I feel GCA symptoms creeping in. Keep us posted on how you get on.
Thank you. This helps a lot. Sometimes one feels like the ONLY person who's gone bonkers with a body in total rebellion. People around you have no real way of grasping what it's like. It's an isolating experience.
Oh dear! I know the feeling although mine happened at 40mg and gradually got better as I tapered again. It’s a horrible feeling. The sleeplessness adds to the low mood. All I can say is that it will get better as you reduce the pred. I’m on 15mg now and sleeping much better again, and probably sweeter to be around.
I thought it would be better by this level as well. Like you, I felt very bad at the 60s-30s...thought by now, my brain/body would be quite relieved and happy to be in the 20s.
The dr prescribed amitriptyline which certainly helped me to get a slightly better sleep and improve quality of life. I warned everyone around me too and ensured a good supply of tissues. You will get through this x
Oh total sympathy for you. I was not on as high a dose as you but it still managed to turn me into a total wreck, including having to leave work one of the days cos i literally could not stop crying, big sobbing crying!! Went on for hours, days. Would you consider asking your doctor for some sleeping pills to use an odd time? I hated them but used once or twice to try get some sleep. Hang in there, more experienced will give dose advice but you are not alone.
If you aren't managing to get these symptoms under control with some relaxation techniques and breathing while taking time in a comfy , quiet space , and you aren't getting enough sleep , or getting relief from a daily nap , you really do need to go and discuss this with your GP and get some extra help.
Especially if a lot of the symptoms aren't related to what you think is an increase in GCA/ PMR pain.
You may just need some sort of nerve relaxant to help you sleep , and some CBT to help with coping with mood swings and panic , but you need to start getting help with it now , you don't want it to take over your World and it could bring on Flares.
If it is being monitored and it isn't controlled by the usual means it may mean that they will need to give you some help with your steroid dose and tapering.
But knowing you have the extra cushion of medical support there will help with the stress and anxiety associated with these symptoms too.
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