Just this week started experiencing a 3 day one sided headache with a burning scalp sensation on same side. No visual issues. Also developed an allergic type on that side. GP immediately sent me to hospital as suspected GCA and have been put on anti bios, 50 mg Prednisone and given topical steroids for rash and longstanding psoriasis . Dermatologist confirmed not shingles and not infected psoriasis. Infection markers are raised but not super high and had lymph nodes in neck going crazy but they have subsided. Since starting meds headache and burning sensation, which spread to both sides, has gone and rash is responding as big allergic reactions I've had in the past are. Had more blood tests , awaiting biopsy and will have further appt with rheumatology on Tuesday. Feeling a bit thrown by the suddenness of it all and the implications of a biopsy and possibility of having to be on steroids long time, risks to sight etc. Also feels a bit catch 22 because if the biopsy is not conclusive for GCA I'm not sure whether they can find out what else it was but I don't want to risk Russian roulette with my sight but nor do I want to be taking drugs I don't actually need and Prednisone is scary. Not had any bad effects yet but have only been on it a few days. Getting the runs from my antibio but that's usual. Any suggestions on coping with this diagnosis phase and tips on longer term management? Should I be isolating? - not been told to and now feeling perfectly well in myself apart from the natural anxiety.
Awaiting confirmation of GCA: Just this week... - PMRGCAuk
Awaiting confirmation of GCA
Hi and welcome,
Ex GCA patient - so yes do appreciate it's scary - but at least you are in the system and things are being organised. It may not be GCA, but the doctors have done the correct thing - and are treating as such - to preserve your sight... if it does turn out not to be GCA then your pred will be reduced significantly. You will not take more than is necessary. .. and no-one gets all or even many of the side effects - and if they do, they can be mitigated as and when.
Just in case it is GCA - have a read through this for some idea of what lies ahead - it might not make a lot of sense today, but it will in future - so hang on to it.
healthunlocked.com/pmrgcauk...
Once you have a definitive diagnosis there is plenty of advice in the FAQs and always ask about specific concerns....don't try and take in too much information initially... you will just get confused and anxious.
But remember there is always some around to answer questions, and many will have been through what you are going through - we have your back.
Treasure your GP as s/he is a gem for actually knowing about GCA and understanding the urgent need for treatment. In March 2017 I started with both GCA and PMR and it wasn't until July that my GP decided that maybe I should be seen by a rheumatologist as there was something not quite right about my blood test results. I finally saw my consultant on 31st July that year. She said nothing out loud, but was obviously unhappy that it had taken so long. Fortunately my sight wasn't affected, but no thanks to the GP, who revealed casually that he wasn't even aware of GCA. I'm glad to say that he has since retired.
Oh indeed and despite the strikes and normal issues with the NHS the hospital have been great keeping on top of things. Would have been nice to get the biopsy sooner but hopefully next week sometime then we will know where we are, or not. Just been all a bit of blur and I feel my life is on hold again just as I was pulling up from bereavement and some post covid issues at the end of last year. and getting stuck back in to various social and campaigning activities. Still have some dental work needing doing that I've had to postpone several times and other household issues and trips to organise. It just feels like one thing after another the last few years and I was hoping for more years of healthy retirement before old age infirmities set in.
Good luck with everything. I think that, as you've found, even in these difficult times, the NHS does turn up trumps when you are deemed an emergency. It's a bit different when you get to the stage of trundling along nicely. I have a rheumatology appointment this Wednesday morning - postponed from May last year, yes 11 months overdue. I suddenly realised last week that I hadn't been called for a blood test, so rang up and was 'put on the system'. However there were no appointments available for this week, and I had to make one for Tuesday afternoon. So it's likely the doctor won't have my results in time for the appointment!
Always the way. Had that a time or two during my late husband’s cancer treatment. Were fortunate as we were given the labels and able to get them done at our GP or could just walk in at the hospital if necessary. Generally 48hr turnaround but needed to be in only three days or so before appt so they were as current as poss.
Another GCA’er here. Yes it is overwhelming if it kicks off rapidly and you were not expecting this diagnosis. It does calm down but for now with the uncertainty it’s rough for sure and feels like everything in your life is up in the air. Don’t try to rush about while you’re on this level of Pred and don’t worry if you feel extra anxious and scatterbrained, that will get better with dose and more answers.
My biopsy was negative after 8 days on Pred but I was still treated as GCA on history and response to Pred alone. If they think it isn’t GCA, ask for a solid rationale and expect a rapid reduction in dose if it is still a no.
If it is yes or likely and steroids are to continue, my advice is prioritise your dental work if not to do so increases your risk of decay in view of being immunosuppressed. If they say you need to take bone hardening meds, request a DEXA scan first to see if you really need them. If you do, definitely get your dental work done first as those meds can complicate dental intervention. You don’t have to start them instantly so you will have time to think.
Hi and welcome - and enjoy your reading list from DorsetLady. It is all very daunting just now but as already said, 10/10 for your GP - she's a keeper. It will improve, we promise.
Thanks. I know this is a good place for support and am grateful for good advice such as I’ve already been given, but I tend to use the site sparingly as I'm somewhat prone to medical anxiety and can’t cope with too many horror stories
I don't think we have too many horror stories as such - you won't get them from DL and me. There is a place for them and if reality means they get a mention they are very individual.
Agree with PMRpro- don’t think you are likely to get horror stories as such. More likely to get them from a random search on Google.
What you will get is good advice and support from patients /ex patients -and a fair amount of lighthearted banter on a wide variety of issues.
You don’t have to read everything…
Absultely. Replies so far and to other queries I’ve made on other issues on this site have generally been very helpful and calming. Just still want to be careful about limiting triggers to catastrophic thinking which I am sometimes prone to.
Then if you find such a trigger - ask one of us immediately and we'll sort out the wheat from the chaff for you. And don't go trawling Dr Google. What you get here is heavily moderated and every single reply is read to eliminate sensationalism.
Sounds very sensible. Thank you.
so glad your GP was on the ball as others have said. Don’t worry, sounds like you’ve had a rubbish time. Take care. Lots of support on here xx my mum has been on pred for 3,5years down to 4mg and I wouldn’t say any side effects to it for her xx
I'm so glad you're getting good care. I had a GCA scare in January. Immediately Pred upped to 60 mg. May have saved my sight. Had biopsy on Feb. 1st. Was inconclusive for GCA as no thinning or healing of artery. My Rheumy insists not GCA, but as I reduced Pred (now down to 35 mg), I'm experiencing some sharp pain around the incision area and some shooting pains around the scalp area. Hopefully, these will go as I get the Pred down some more. Can't get hold of Rheumy - ever. No GP. I am in Nova Scotia. I do have a phone consult with Rheumy on May 2nd. These are pretty useless. Totally understand your concern. Stick with this forum, more answers here.
As others have said, so glad your GP was on top of it and you got help promptly. I was fortunate at well, getting referred to a rheumatologist who recognized my symptoms right away. I had never heard of GCA. It's approaching two years now for me. It's been a bit of a roller coaster. 98% of the time I feel good and carry on with my normal activities. I have had four flares/infections that have set me back and been a challenge to figure out. I'm on Actemra and down to 10mg pred. Hoping for no further setbacks. All the best moving forward!
Sounds like the things my husband had. Doctor was not on the ball just thinks everything is because you are old..husband is now blind ..took so long to realize..no tests..do stay on your meds and do what they say..good luck
So sorry it must be very hard. And as I understand it , it's so controllable once on the steroid regime especially if caught early. In our Trust any suspicion triggers the GP to immediately contact Rheumatology and start meds pending immediate investigations. Better treatment than my late husband got before he got his cancer treatment started. - far too late to make as much difference as it might have.
Hi Menno. Just so you know, I was started on 40mg pred three months ago and have tapered down to 25 so far. (The reason they started me on 40 is because they thought I had myositis at first, and it took a while for them to figure out it was actually PMR.)
In any case, I have had no side effects from the prednisone (yet). I do maintain an excellent low-salt & low-carb diet, which I am sure is helping.
Hang in there, and stick around here. The people here are amazing and so helpful. 
<3
I just saw your post and wanted to join in supporting you through this anxious phase. I'm a GCAer and I'm so happy for you that your physician jumped on it and didn't subject you to any risk. The prednisone can always be reduced but this way you are protected. You will find lots of support and understanding here. I have relied heavily on this group...and they haven't failed me yet~! You are never alone .....💞
Thanks everyone for your support. Still awaiting the biopsy but Rheumy think I'm a bit of a mystery as some of my symptoms were definitely characteristic of GCA and have responded to the combo of Pred, topical steroids and anti bios I was put on - skin now better than its been for years and I've noticed some improvement in my eyesight in terms of clarity and stability suggesting I may previously have had some gradual detriment I hadn't really noticed or had just put down to the vagaries of my eyes post bilateral cataract ops., ( opthalmology have never expressed any concerns when they've scanned) but the scan didn't really show anything. The mammoth allergic reaction I had ( which I haven't had the like of for over 30 years) has also receded and the rash has all but gone along with all the inflamed lymph nodes. So I'm actually feeling better and sharper than I have in a while and my post Covid tachy heart has calmed down due to the Pred and possibly because its not having to work so hard to get blood to my head. And my glasses and hearing aids are fitting better now any inflammation has gone down. But that might just be the steroids talking!Upshot is I'm still waiting but have been told to reduce to 40mg for this week and see how it goes. Plan if biopsy is inconclusive - which is more likely the longer the delay- would be to take me off the steroids completely and monitor carefully leaving me with a supply of meds so I can hit them immediately on any resumption and get straight back to them. Feels a bit Catch 22 to me and I'd be happier in some ways if the biopsy was definitive for mild GCA or they had a clearer idea for a differential diagnosis. Don't like the idea of having an invasive procedure that isn't going to be useful, and obviously don't want to be on meds I don't need that might mask a different problem, but on the other hand given family history of stroke and the importance of my eyesight I don't want to be playing Russian roulette. What to do?
Now got a biopsy date for next Thursday- a bit late so I don’t know how much use it will be. Meantime I’ve come down to 40mg from 50mg last week and feel generally OK but notice that my scalp gets noticeably warm though not painful on brushing and then goes back to normal. Just wondering whether the drop might have been too fast or whether my scalp is still just a bit over sensitive after a massive allergic reaction, now just about gone on my face, and a weeks worth of applications of topical steroids. I could titrate back up to 50 but I'm a bit concerned that if it’s not GCA the steroids could be masking what’s really going on.
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