Hello.Day 4 on 60 mgs of Pred for GCA from E.D eye hospital.Pain in temples and back of head had been dreadful but lightened up a little today..still awful.
My question is I have pain not sure if it's a sore throat or in my ear.. left side worse than right.. like pain in my temples.Has anyone else had this and also so much of involuntary gasping for air.Blurrness of vision same but worried about this ear throat pain.I go back to hospital appointment tomorrow.thank you.xx
Hi,
Ears can be affected in GCA.....and would put the gasping down to the steroids.
Make sure you mention all that’s going on tomorrow - make notes so you don’t forget, and keep us informed please.
I am glad that your symptoms are lightening a little this is a good sign. High dose Pred can make you feel anxious and panicky initially, be aware that some of your symptoms will be this. I remember the gasping for air - a sort of involuntary sob. Take heart that you are safe on your current dose. Good luck tomorrow. Let us know how it goes. 🌷
I've been thinking about you 🙂. Good to hear your pain is less now. You're early days in but hopefully will see gradual improvement as the days go by. Do as DorsetLady says and make a note of all your questions for tomorrow.
Thank you for letting us know how you are.
Thank you..Has anyone else got like a heaviness in their chest.not sleeping at all and feel it now at night.And this air gasping has been going on since before Pred..as someone suggested.I am hoping that he will not increase meds today but also hoping pain will go.I now have the raised temple blood vessels and hope they don't want biopsy as that would make me more anxious.I really don't feel like myself at all and so low I can hardly talk without please God it will pass.thank you all.xx
Gasping may be caused by anxiety and feeling panicky. Are you still waiting for your telephone appointment for today? Make sure you mention this.
Yes..I am in eye E.D for follow up.im so worried that they will increase my steroids as I really was hoping pain and stiffness would settle down.neck..top of my back aching and temple pain better than last night but still there also near my esr.I know I have bad anxiety about this. and I can't seem to shake it.This gasping for air I noticed some weeks ago.Dr Ashok was recommended by PMRPro and I will try next week and make an appointment to see her.Has anybody else had med increased after 6days to 70 mgs.It sounds such a huge amount and I know I sound silly and stupid when my eyes are at stake.Im sorry.thamk you.xxxx
Some have had 80mg - and one approach is a 3-day pulse infusion therapy with even higher doses (up to 1000mg) - don't worry once the symptoms are under control they reduce again.
You're not silly or stupid: you are concerned about your health and that's natural. If, I repeat if, you are prescribed extra steroids then it will be for your own good and you won't be on that dose for long. See what happens today and remember you have the option to contact Dr. Ashok as recommended by PMRpro.
Thank you so much and PMRPro..I really appreciate your help.i am still waiting to see Dr but nurse told me no change in my eye pressure..so hopefully that is good.i will ask him..if I don't panic when I see him..thank you again.xxxx
When you see the doctor take one or two deep breaths and focus on what you need to say and ask. Try to speak slowly and calmly. Remember he is there to help you and he will will want to listen to you and do his best for you.
All this sounds like high dose Pred. Keep telling yourself this isn’t you, but the Pred. All my veins everywhere raised on high doses. Insomnia is normal too but I know, it’s hardly what you need when you are going out of your mind with worry. The trouble is nobody tells you how intense it all feels and those who’ve never experienced it have no idea what’s going on internally for you right now. Try to exist on naps and do very little.
Hope your pain improving and hospital appointment goes well.
I have GCA, earache has been one of my symptoms from the start, even before the severe headaches.
I have just left the hospital and seen another opthalmic Dr.She examined eyes and said she was happy.she said symptoms not like GCA and I will see a medical person tomorrow in another outpatient clinic.she did mention biopsy but does not believe that it is GCA.She only does eyes and reluctant to go into GCA.Interesting .. she said I might need new reading glasses..I had last 6months ago and told her I didn't think blurred vision could happen overnight and no reason.I need to get Rheumy and will do that next week.probably have the biopsy.. even though I was hopeful I would not have to have that.thanks everyone..she did not want to change my meds until I see someone else tomorrow.dont think medic is answer but will have to go with it as she was talking about taking me off Pred.xx
Good that you are going to get to see a rheumatologist. There have been a number of recents threads on biopsy that may be worth reading. Hope appointment today goes well.
LaPainting. You don’t need to rush to get a biopsy.
You can have an ultrasound scan..
In GCA patients, ultrasound of temporal and axillary arteries has many advantages: it is widely available and it can be performed by the physician himself. The suspected diagnosis can be confirmed or excluded immediately. Ultrasound is not invasive and has no relevant side effects.
YuliK 😷
It’s quite possible that if it is GCA it hasn’t affected the eye arteries as much as the ear ones. It isn’t just the eyes that are affected. No point in changing glasses until the Pred dose settles because they will change with reduction in dose. You can, but it’ll get expensive.
Thank you.. have been in O.P all morning and now the Docs here believe that the problem is in my neck as I have degenerative changes and that the cause of my symptoms and they are also saying pains in my ear and blurring as well.Referred me to Rheumatologist and Physio.I think they believe anxiety as well but I explained I didn't suffer from anxiety before all this started.I still have the temple pains coming and going and pain into my ear.I was told to stop Pred so I am on 60 mgs for last 8 days.Can I just stop without any tapering at all and how long will it take this pounding heart to go away.thank you all.. sorry..one more thing..if I have D.D in my cervical spine should I be seeing a Rheumatologist or Orthopedic person.xx
One cause of GCA-type symptoms can be ankylosing spondylitis - and if they are wondering about that it is a rheumy you need.
Thank you and I will make an App as all very vague.My next problem is do I just stop the Pred??They told me to just stop but will I have awful anxiety and side effects after 60 mgs x 8 days.I am so worried as to what to do.thank you.x
You can do that after only a week but you will notice the change - if you are prepared for that it is not so bad. Did you start at that high dose or were you on a lower dose [reviously?
I started on 60 mgs and taken 8 days.What do you think I will experience if I just stop like they said as I feel so wired up and anxious its unbelievable..but then I have A.F and maybe making my heart pounding worse.A Dr suggested asking G.P for some medication at night to help counteract effect of Pred as I seem to have forgotten how to feel tired due to all this wired up and pounding heart..that was before they told me to stop.I will ask as I cant go through many more nights like last 3 but not sure what to ask for .
If it were me I'd just stop - just be aware you MAY take a few days to adjust but it should be less adjustment than waiting for your body to adjust to all that pred.
I will..will it be aches and pains rather than on chemical alert do you think.I would love to know what is causing this face/Jaw pain in the first place.I just hope its not GCA after all and i would have to start again.Thank you so much for your help.It truly is appreciated.
Possibly - steroid withdrawal is often described as a rheumatism which suggests aches and pains doesn't it. If you get into too much of a spin there is always 999 if you explain what's going on.
Hi. I get pain in my throat and at times it is feels sore. The pain i get is always when I am eating and it stems from my tongue.
I totally agree with you but knowing this does not seem to make me feel any better..I know it's selfish and wish I could climb out of it.So many people have genuine bad reasons and it only makes me feel worse.
You have awful pain and feel terrible, how much more genuine do you think you need to be?! I also think that the majority of docs have not the foggiest idea what it is like to be in pain all day every day let alone the distress of not knowing why.
That is just it.I feel so bad and have such head pressure and pounding..could this be the Pred as I am sure my head is more pounding and not clear.I have not slept at all for 3 nights and its like a chemical inability..my body is on alert and wont close down.thank you.And am still no wiser.x
Yes, all of that sounds exactly like high dose Pred. Been there myself.
Snazzy..can I just stop like they said and not taper. and will I still be fired up and cant sleep.
In theory yes, because you have been on them for less than 3 weeks. However, you have been pickled in a cortisol-like substance and your body might not just ping back to normal instantly. You may get withdrawal for a few days and feel a bit rubbish and tired, but who knows? People do do this after a diagnostic run of Pred. Keep an open mind.
Thank you Snazzy.I don't mind the tired bit..I think I would welcome something normal like that but the pounding heart and anxiety is what I would worry about.Would it get worse and I know everybody is different.i do hope that they wont tell me to start again later as i still have the symptoms.xx
I think you have to keep telling yourself this isn’t you and it will pass. That’s what I did. Your heart beats fast so your emotions tell you that must be because there is peril but there isn’t any. Trying to second guess everything is classic but nobody call tell you without a crystal ball. You will be ok.
Thank you. Please God 🙏 x
Please don’t beat yourself up and it’s not selfish, only you know what your pain is like and how it makes you feel, everyone is different and we all deal with things in different ways, there is no right or wrong way.
I’ve read others saying about on gulping on high dose Pred. Also, Pred affects the focusing of the eyes so in the early panicky stage it can be a worry trying to work out if it is the dreaded GCA or just the Pred. As a general rule I found the Pred eyes was a constant inability to focus properly, especially when changing from one distance to the other. My ear was affected in that it felt congested with tinnitus and impaired hearing and my throat felt like a dry throat. The ear symptoms took the longer to settle as in weeks and my weird eye symptoms (other than the blur) was within hours.
Bottom line is this stage can feel pretty hairy and Pred just makes that anxiety worse. It does settle so hang in there!
Sweating and sore throat / croaky voice. 
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