To cut a long story short, newly diagnosed with GCA.
I've been on 60mg Prednisolone for nearly a week and although it's taken the edge off the awful pain I was in, my head doesn't feel like it belongs to me (if that makes sense?)
I feel so woozy and dizzy with internal shaking and a fuzzy throat, double vision, burning/ tired eyes, photosensitivity, pressure in ears, throbbing temples, sensitive to sound and angry hot red face flushes.
I feel so worried that I'm never going to be able to function again, let alone drive or go back to work.
Are these effects of the meds or CGA?
What can I expect long term?
Sorry to sound dramatic
I do have an appointment with rheumatologist in a week's time, thankfully.
Best wishes to all, Kim
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Carer1976
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Sorry to hear you’re in such a bad way -would say it’s a combination of meds - dizziness, blurred vision, sensitivity etc -and should lessen as you begin to reduce them.
Double vision, throbbing temples and ears could be GCA…do they improve during the day -says a couple of hours of so after you’ve taken Pred - or are they worse at any specific time?
As connected to GCA they should decrease as the dose gets the inflammation under control.
Treated correctly you will get back to a normal life, and get able to drive. Working may be a bit more difficult -certainly in the short term… really depends on much you improve and what your work is.
Maybe gave a look at these links -first is general info-and second is a look at others who have had GCA-
Don’t worry, you don’t sound dramatic. It’s a nasty shock to be diagnosed with GCA (as with many conditions), and that combined with the effects of the medication can make life feel very difficult. I notice, also, that you’re relatively young, so this diagnosis will be even more unexpected 🥹
It’s good, though, that your doctor has made the diagnosis and got you on medication, and that you’ll soon see a rheumatologist. Some people wait a long time for this so I’m pleased you’re getting good attention.
I was diagnosed with GCA in June last year and only put on 40mg pred - I felt bad enough on that so I can imagine how you feel. I’m now down to 12.5 and can assure you that you will, on the whole, feel much better on lower doses. You just have to take the high dose now to get the inflammation under control - that’s absolutely essential.
All being well, you should get back to driving - and the situation with work depends very much on what you do, as well as on how you recover.
It’s early days yet, try to take things as easy as you can, and have faith - it really is still early days, and you’ll likely be feeling much better soon.
This is a great forum, I’ve certainly found it very helpful.
Just another thought! If you don’t feel your pain is improving much, or you still have double vision, throbbing temples etc, don’t rule out calling your GP or 111 before the rheumatologist appointment. Some people are started on doses higher than 60mg (80mg or an IV infusion), so there’s the possibility of that if you don’t feel any better on 60mg.
Basically don’t be afraid to speak up if you need to. It’s important to get your dosage right and your doctor is the one who has the details.
Pred made me feel that way, but I agree with the others that your GCA may be needing more, so I’d be interested in your reply to DL about the timing. The early months of GCA was pretty hairy but it does get better! Do remember you have a serious condition so you need lots of tlc.
Hi and welcome to a place where people understand, inform and care. I have GCA and have been where you are! So glad you have an appointment coming with the rheumatologist. There is much of my early pred days, I don't remember. The important thing is that it will get better, it takes time and going through some feelings we could do without. Dorset Lady gave you excellent sources and advice. This forum saved my sanity, I swear...so don't worry about sounding dramatic!! Yes, things do get back to normal. Hugs !💕
Good morning l have GCA and when l was on 60mg of pred l had some of what you are experiencing plus other issues. It did improve as the steroids reduced. It's quite alarming isn't it when everything is so new. Things do improve. My best advice after two years is to not be in a hurry to do anything and if possible have time of work. If you are tired have a rest and be very kind to yourself. I often at the start tried to fight the GCA and overdo it resulting in a situation that left me so done in that l had no choice but to rest. Also try o avoid stress from all quarters. I had issues with family twice that caused flares resulting in the rheumy having to put the steroids back up. I drive now but haven't gone back to running my business.
I too have been recently diagnosed with GCA after having PMR for 2 years, so had some experience of what steroids could do. Or thought I did. Ha! The doses involved in GCA though are a totally different kettle of fish and I agree, they definitely make my head feel like it doesn't belong to me either at present. My sympathies on that one (and everything else too!) for sure. I'm currently reducing to lower doses and hoping to start feeling better soon, so hope you do too. All indications from the wise and experienced ones on the forum here certainly indicate things will get better and I find that immensely comforting when I'm having a particularly horrible or bewildering day. Or two…
Hang in there, it will get better and in the meantime, as others suggest, take your time, be kind to yourself, learn as much as you're able to absorb about your illness and how to live with it. Be grateful for appropriate treatment and be assured things will improve so life will return to a sense of normality that will allow functioning and even possibly thriving, although maybe not necessarily as life was previously. Just a new normal. Wishing you all the best!
As everyone has said, these high doses are a shock to the system but as they reduce on a tapering plan things will get better and you will be back to yourself again. Most people are only on the high doses for a few weeks. Again as everyone has said, there is no point fighting it or carrying on as usual at the moment. Take it easy, drop the things that aren't essential and be kind to yourself until you feel better. You will absolutely be able to work and drive and lead a full life. This is a time-limiting illness, and your immune system will eventually reset. The length of time is different for us all. I was diagnosed in March 21 and for most of that time, with a few ups and downs, I have been living a normal life - work part time, carer, driving, plus social life. Anxiety was my enemy more than GCA or pred and now I try and chill more.
All the symptoms you mention are common with high doses of pred, but of course the one you need to be vigilant about is the double vision since eye issues are the big risk with GCA.
You have youth on your side, however that raises the question that you are at the very young end for GCA. When you see the rheumy see if their hospital has the facility to scan for GCA. Only about 50 % do. You could also see about a biopsy - unfortunately steroids only give a short window for that to happen because they reduce the inflammation but if you are up for a temporal biopsy it is worth pushing for one as quickly as possible; they are not 100% accurate but are the current gold standard.
I take it you have been GP diagnosed and have high blood results? See what the rheumy says and come back to the forum with any questions. We are here for you.
A study has found that the u/s is as good as the TAB - not to mention that it leaves the arteries in place for another shot if required later! TAB is only a gold standard because it was the only option - not because it is a wonderful one! Some say it is only positive in about 40% of cases!
Pro, I so wish they would roll out ultrasound across all rheumy departments. Is that something the charity is working on? I feel so cross my dept does not offer them, though they are good in other ways. I didn't realise scans were as good as TAB and I've seen people having short term problems with TAB on the forum.
But I sort of think Kim should try and get whatever confirmation she can at her age.
It is recommended - but the various hospitals have to have ultrasonographers or doctors who are trained to do it. It all comes down to money and waiting lists. All hospitals have a spare surgeon considered competent to do a TAB. u/s services are often fully booked too. Most EDs now have u/s devices for use there but there aren't always rheumies handy to check and there are waits for rheumy appointments - each speciality learns their own technique/area to investigate. There has been a push for fast-track clinics for GCA - but they cost in a different way and at least one hospital I know of trialed one but because GCA is a rare disease and you can't say there will be patients on a given day, those spaces are wasted and not financially viable. And the state of ALL healthcare at present, it is an even bigger struggle.
I would suggest you ask your rheumatologist if she can do an ultrasound, mine does and will do during a consult if she thinks it’s needed. Best of luck
I can only imagine how you feel right now having been diagnosed myself this spring with GCA and then a few weeks later also with PMR . Although I have had PMR in the past and learned much about it and prednisone treatment, GCA is a much more difficult journey with a lot of twists and turns. Even as a retired nurse from a medical family, I have found the significantly accurate and compassionate advice from others on this forum to be invaluable. In many cases, they are more knowledgeable about GCA than many of the medical Drs. they have had. I have observed that many good Drs. just didn't have the knowledge and experience with GCA and tapered the prednisone too quickly with the goal of reducing the prednisone but greatly erred in addressing the clinical symptoms of the GCA patient, which really drives the outcome as you will learn by reading other posts.
Like the others, I do feel that most of your current symptoms are med related but concerned that your percentage of relief may indicate your dose isn't quite high enough. FYI- The Neuro Ophthamologists feel it is imperative to also have a high enough therapeutic dose at the initial diagnosis onset to prevent a severe vision issue , usually is at least 60 mg prednisone daily . Amazingly, a number of the other specialists DO NOT seem to be aware of this risk and start patients at a lower dose. The good news is that the vision risk reduces substantially in the first 2 weeks of treatment and becomes minimal after 3-4 weeks. The initial GCA Prednisone dose, to protect vision, is generally calculated on body weight as well and typically is 1 mg of Prednisone per kg of body weight... so if one weighs 130 #, which is 58.97 kg, you would start on 60 mg prednisone a day .
Yes I have had all of that and more but it takes s long time to get to grips with preds. You will be reducing them very soon as they won't keep you on that dose for very long. always reduce very slow it's a shocking pill but it works.
I also have GCA, diagnosed just over a year ago. I feel very fortunate in that when I was put on 60mg of prednisone, my symptoms got much better in just a couple days. The pred. made me edgy, like drinking lots of caffenated coffee, and I woke up at night feeling all wired. But that all got better as pred. was reduced. I live a very normal life, doing all those things I enjoy doing. So, there is hope. Good luck and be well!
When I was diagnosed in 2017 with GCA 60mg was the start, which did improve symptoms. I can't remember the exact taper, but getting below 40mg or to 40 mg was my Rheum's goal initially as there were opportunistic infections he was concerned with above that. The lack of sleep was something. You've come to the right place for support.
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