what can I possibly do to help with this intense and panic that sets in every single day a few hours after taking prednisolone? This is now 2 months in and it terrifies me. My colour goes from my face, blood pressure rises and I just can’t control this feeling. I’m GCA so know this is a long haul.. any help appreciated. 🙏
anxiety and panic : what can I possibly do to help... - PMRGCAuk
anxiety and panic
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lennysmummy
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PMRproAmbassador
A few people who had this sort of adverse effect switched taking their pred before bed and slept through the effects. Is the pred affecting your sleep - what dose are you at?
Have you spoken to the GP about it?
DorsetLadyPMRGCAuk volunteer
Why dose are you on at the moment? That may helps us make some suggestions - like splitting your dose so it’s not such an assault on your body in one hit.
Your profile says you have PMR, but you mention GCA in this post, so what do you have? If you do have GCA then splitting doses is not the usual procedure.
Have you spoken to your doctor about your anxiety /panic - which unfortunately is a side effect of Pred?
It’s wretched isn’t it? I used to feel uncoordinated and groggy so did what PMRPro mentions and that’s taking it before bed. I just tried to create some distance between those feelings and me by telling myself it wasn’t me, it was the Pred. Often. Telling myself that the feelings weren’t real. It wasn’t easy but it did get better as the dose reduced. However, during the whole time until at least 10mg I had to steer clear of anything emotional online or on tv, even rom coms because of the bad bit in the middle before it goes all mushy again.
hi Snazzy! Yes, I agree. I found I was having ridiculous anxiety , but found when I chatted to myself that this is not me, Must be either the Pred or the PMR, it worked wonders.
What dose are you on? Have you tried splitting the dose or run it past your Consultant?
Hi all, sorry it is GCA diagnosed with biopsy. I was started on 60mg, reduced as my blood pressure was uncontrollable reading over 223/ rheumatologist dropped it to 40 then 30mg and I stay on that now until at least may. She then wants it reduced by 2.5mg. I’ve managed to get done sleep at night since coming down slightly. I was given enteric coated to which I tried for a couple of days as my blood pressure stabilised with reduction. Yesterday and the day before blood pressure shot up again to make me think it could have been a reaction to the coating. Today I’ve reverted back to uncoated… stabilised again, slightly going up when my anxiety kicked in again 3 hours after taking them. My bloods have been normal since the onset in December …. Gp missed the raised ones last June. Maybe I should try tomorrow to hold off and take them before I sleep. I do not function in the afternoons at all, I find that the hardest.
I wouldn't increase the time between doses to more than 24 hours, not with GCA. I would take some tonight, about half the usual dose which should then take you to tomorrow night.
will that be ok to do that? Even if that means I’ve gone to a higher dosage for today? Also I take diazepam 2mg, amitriptyline 10mg at night. I can’t even travel to see my grandchildren at the moment…. Not that I would want them to see me like this. Everyone of my sons thinks that because you are on steroids it’s fine, can’t understand what they do to you physically and mentally. 🙈
Or take half the dose in the morning and the normal dose in the evening if it worries you - that is what we do when travelling and crossing time zones. I just don't want to you have too little tomorrow which would be the case if you delayed the dose.
Is the diazepam and amitriptyline for sleep?
I have had rectal spasms for 11 years. They are both prescribed as a nerve and muscle relaxant. The other problem I’m worried about is ok I feel bad from late am to pm but during the evening my eyes and unsteadiness seems to settle. I worry that will I feel the blurriness more with the unsteadiness from the time I wake? It’s the uncertainty of it all. Thank you for your advice, I really do appreciate it. I will now go and watch my son on Pointless which will cheer me up! X
one day on a higher dose isn’t going to stop the world …. better that than too little. ..and I’d rather you took whole dose in one, and taking it at night [as suggested] means you’ll probably sleep through the anxiety
Thank you. 🙏
But you’re not fine Lennysmummy. You need to take care of yourself and focus on trying to get some stability. I felt the same on higher doses, so anxious, emotionally labile, irritable and not myself. The first months after diagnosis with GCA were the worst. I was slightly delirious at night, terrible side effects as well as insomnia. I struggled to accept what had happened. Great support from my GP and Rheumatologist plus tapering successfully so far down to lower doses of pred and things feel better. Hang on in there. Tell your family this isn’t a linear process. That’s the way my husband has explained the illness and treatment to friends and family. One day you can be ok but it’s unpredictable, especially on higher steroid doses with the side effects you are suffering. Take care. You need rest, follow your body, exercise if you’re up to it, good diet. I try to get outside for a short walk daily but many days (especially in the early stages) I was wiped out. I limit my arrangements for the week match my energy levels and try not to overdo it. My heart goes out to you as I was in your position 8 months ago. It will get better for you.
Thank you so much. Yes I admit to struggling with this badly. I don’t have energy which is frustrating in itself. You have made me feel so much better and I really hope in 8 months time I can look back on this and will be at the stage that I can manage and cope with this awful condition. Your husband sounds amazing. My partner is great - he’s doing so many of the things I’m not able to do. Bless you Bluey-1. I will accept it all, it will just need me to change my mind set. 🥹❤️
I often say to new members that in a year they will look back and see how far they have come. No-one believes me - but many come and say I was right. It feels unattainable at the moment - but it will come.
I will certainly heed your words PMRpro. ❤️
I’m no expert and cannot comment on your medication but one of my anchors both day and night is deep breathing. I use Headspace and without doubt any of the breathing exercises calms me down and improves how I feel. I’m sure there are many free online ones but I love be the structure of Headspace. Sending healing hugs to you.
🙏🙏
....and it is really true. Just staying on the forum and sharing will help. I have GCA and really cannot even completely remember the period you are going through now...the important thing, it seems slow motion but it isn't forever..... and many people walk with you!💞
This forum has given me so much advice and hope. I think tomorrow will be a better day, then tomorrow I know I will be thinking exactly the same and so on… today the tenderness in the back of the head has been ongoing despite taking all the medication. I woke earlier deliberately to take pred. I thought it might keep the side effects from lasting as long in the day…. It didn’t work. My ophthalmologist appt has been delayed on Monday by a week so that’s stressed me out. … hey ho it is what it is. ❤️
Hi Lennysmummy, I’m a fellow GCA-er, as usual it’s great advice from everyone here… wondering about sharing this with you, but be prepared that while the anxiety will diminish, in my experience not all emotional wobbliness disappears as you reduce Pred … I find myself suddenly wanting to cry for no apparent reason ( I’m at 5 1/2 at the moment ) but have been on the snakes and ladders board for 2 1/2 years…. But everyone thinks one’s fine and seems back to normal - it’s so not the case! Wishing you all luck and strength x
Unpredictability is the name of the GCA game. After a run of good days, today I’m exhausted. What I am able to recognise is that I’ll pick up again after a day or two. It’s that thought that keeps me going even though I feel rubbish today. At least I have an empty diary so don’t have to cancel anything!
I hope tomorrow is a better day for you. 🙏
I think I have to accept that, I also believe it can make it all seem worse.. the emotional part is a big player. To outsiders they think you just take a pill and it all miraculously disappears. I have friends and family trying to arrange meet ups.. the thought just turns me into a wreck at the moment, I am not bothered as such about the changes they will see in my appearance, I’m 63 so be it. Thank you for replying to me. 🙏
You sound so like me. I also felt a wreck at the thought of meet ups. Friends now understand that I may have to cancel on the day. Cancelling adds to the stress and impacts on my health. Things a lot better though as I’ve actually managed a few coffees/strolls/even brunch/lunch. Evenings definitely a no no at the moment. It’s so difficult when you can be ok one day and not the next. I do look pretty dreadful on the ‘off’ days with wobbly legs and not able to walk far or stand for any length of time. It’s the total fatigue that is hard to explain. The emotional part is a major thing for me too.
There are so many issues trying to cope with it all… I do need a good epilator if you can recommend! 😂 wow where does all that fuzz come from? Seriously I don’t want to shut the world out but sometimes I just cope better in a bubble not thinking of the stresses a meet up might mean…. ❤️
Totally understand. The weird side effects that are different for everyone on pred. I haven’t grown hair, my hair has actually thinned out a lot and is dry. I only wash it weekly which is a bonus. I do struggle with stress which may be partly why I’ve ended up with this condition.
oh I am so with you on stress! I am a believer it’s a trigger. Maybe we should all stand in the middle of nowhere and scream instead of keeping it all in. 😉
I have a VERY old original Braun epilator - does fine for face too even if it is a bit nippy at first.
Yes I think Braun are very popular, thank you.
I had one of those, PMRpro. Don't know what happened to it but have resorted to plucking hairs from my face in the last few years. I dread when I am no longer able to do it!
When I had the black beard with Medrol the tweezers wouldn't have come near it! Still use them for the little stubbly white bits ..
The odd stubborn hairs are ok for tweezers… the sides of face is so fuzzy I look like a ware wolf! 🙈❤️
I had very respectable sideburns until I remembered the epilator! Best done after a shower where you let your face get pretty wet. And since my face-fluff was dark my face looked a lot cleaner afterwards! The first time it took a few sessions but then it was OK.
Very strange that you lose hair on your head yet it all grows on the face…. I’m thankful for masks 😷 😊
the wobbly legs! I swear people think i’m drunk sometimes as I weave up the street…
I had one of those wobbles recently and realised later, on reflection, that a woman looked at me in a strange way. Am convinced she thought I was drunk. My fault for carrying that bottle of Shiraz in plain sight🤣 I jest!
At least you weren't actually DRINKING out of it ...
hi Lennysmummy! Yes, family and friends do not understand this disease and how it has changed us. I am a virtual hermit these days. Chat to people occasionally, send brief emails and e cards but the idea of my friends now seeing me as I have aged 20 years is out of the question. Little old lady with grey messy hair and wobbly legs. 2 years ago fabulous blonde hair, ran book clubs,, life and soul of the party.
❤️❤️
That’s so sad … do you feel stuck now? Or that things are slowly improving at all? Have a peaceful day..
Bless you. Yesterday dreadful, today wonderful. What a peculiar world we live in.
oh, indeed x
Good morning from the states, I am now 1 year into a diagnosis of GCA what a life changing experience! It gets better believe me. I am now walking (with walking sticks) for 30 minutes a day. Every day I give thanks for my sight, give yourself some time I remember bursting into tears for no real reason and the anxiety 😟 will pass too. We know your path and it does become easier.
Thank you. X
It seems nobody understands PMR unless they have it. I have one "friend" who is disappointed I am "stuck" with this diagnosis and thinks I should just heal myself. She hasn't bothered to ask any questions that might help her understand...
I just want to step back a bit here. I fully accept the physiological reaction to Pred as some people’s blood pressure and anxiety can rocket. It is often the case that at the beginning there’s frantic trial and error to see what works better as our own reactions become clearer. However, it can put undue strain on your blood pressure and mental state if you are adding self imposed worries and expectations on top. Fuel onto the fire so to speak. So, it is often the case that people are highly stressed because they are being stopped from being normal, both being able to go about their life as they would like and how they appear to others. In this game people need to be told, it is a rarity for people to understand without being firmly informed. This is made much worse if the doctor makes it sound like you’ll be fixed in a jiffy. It is so common to read here, “my family can’t see me like this”, or “I can’t help them like I did” or “I feel terrible, something must be wrong?”. You say you can’t function in the afternoons, that is pretty par for the course, especially when you are on the moderate to high doses.I went from being a very active and working 54 year old to having to move in slow motion and spending time either wired or in exhausted naps. GCA is a drain on your system and Pred is powerful but necessary for now. It does get better but one has to accept that normal life is not ours for now like with any serious illness. Keep telling yourself it’s temporary and do what you body says as much as you can.
Taking mine before bed helped me sleep initially but I still woke at the crack of dawn once the stimulant bit kicked in. It was still preferable to the peak blood level groggy storm though. As PMRPro said, don’t be tempted to make the gap more than 24 hours.
Thank you. 🙏
Changing my mindset was hard. I wondered, would I get my hobbies back again? Would I travel, dance, play hula hooping with my granddaughter, do my favourite coastal walk again? It felt like trying to climb a metaphorical mountain. I know it’s a long road and I suffered a lot of muscle weakness on pred. I have to follow my body but looking back I can see how far I’ve come. With a good diet and gradually increasing exercise the muscles are gaining strength. You will be fine. I’ve had to accept it’s a day / week at a time. Frustrating I know but it’s great when you get to a state of there being a run of better days than others. Good luck!
Thank you again for taking time out to reply. You take care too 🙏❤️
Sorry I can’t offer any advice on the Pred, but curious about your remark about watching your son on Pointless! How did he get on?
We all try to be Supermums, but as others have said, sometimes you’re simply not ok. I always think we worry about our kids (however old) worrying about us - bit of a vicious circle!
haha. No he’s doing Richard Ozmans co hosting for 11 days. He’s done great. 👏
Wow - I know somebody whose son is famous!😂
Yes Alex has done well. At least I’ve done something right. 🙏❤️
You certainly have, he’s a great person, love him on The Last Leg.
As a family you have been through a lot, and you should be proud of him, and youself…
Thank you. Yes that’s all so true… i wouldn’t change anything about him though. Apart from the fact we clash as too alike. 😂 x
Ahh, yes…but that’s family life isn’t it!
most definitely.
If you are able to find a clinical/health psychologist who practices EMDR (Eye Movement Desensitising Reprocessing) they can work wonders in helping people to relieve their anxiety and teaching you the skills to practice it yourself. Not all practitioners are qualified in the area and it would pay to find one that is skilled in the technique.
I hope it works for you as panic attacks and high levels of anxiety are awful and do tend to leave my son drained of energy and enthusiasm.
I have a hypnotherapy tape that was done for me 4 years ago when I had been struggling with pain and anxiety for my bowel problems. I’ve been listening to it every day. Great for about an hour but I think I need to listen to it intermittently through other day. X
Hello,I was interested to see that you also take diazepam which can cause panic attacks, though not at the same time as the steroids. I wonder if taking the two might be contributing to your problems. Even if I'm wrong, with the bad effects you are getting from the steroids it may be better to consult your doctor.
lennysmummy in reply to
I find they calm me and have had them for 8 years. They help me sleep too.
in reply to lennysmummy
Yes, it’s difficult when you have found medicine that is doing you good to consider other options. I hope that some of the more natural options suggested by the forum, will help you.
lennysmummy in reply to
Thank you.
Have to tried the deep breathing exercises to help control the anxiety and panic? Have a look on YouTube.
🙏
Sending love and best wishes...I too suffered (and still do at times) from the intense feelings you describe. However I found making the small changes mentioned above have helped...especially fresh air and diet. Take care and and I hope things improve soon 💐🙏
Thank you. Onwards and upwards. 🙏❤️
elavil side effect- may be of interest, amitryptyline has as a usual side effect rapid heart rate, this can be communicated by vagal nerve pathway and increase anxiety, may want to ask if other SSRI could be substituted that would not have this SE. Steady on, better days and bluebirds over Dover are coming.
Thank you. I will get it checked out. 🙏
You can see how many people share your experience, understand it and care!!💞
Prednisone decreases the blood level of diazepam (Valium) as well as other benzodiazepines- Xanax etc. What you are getting is withdrawal. Panic is a symptom of withdrawal- that’s why it’s done under medical supervision.
Surprised those drugs are still being prescribed because of their addictive properties.
(Retired anesthetist here).
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