Hoping for help/advice... Hi All, I’m hoping to gain some help or advice with my moms condition. She is undergoing a number of tests for possible Temporal Arteritis. Her Initial symptoms were stiffness around the neck and shoulders, painful scalp, headache that she has had for two weeks that hasn’t really gone and what she describes as the top of her left eye having a slight shutter effect - she describes it as if you were to look at a snow topped mountain the snow at the top is in shade. She attended a&e with the above Symptoms but it has taken a further week to get an appointment with a specialist who mom has said was brilliant and has done a number of tests and I’m taking her in next week for an mri. She has been prescribed 40mg of steroids. I’m not sure of the terminology but the blood tests were in the normal range (ie not raised) If anyone can help I’d like to understand if there is any hope of the visual issue improving and is there anything else we can do to support her at this stage. Many thanks
Support query: Hoping for help/advice... Hi All, I... - PMRGCAuk
Support query
Welcome to the forum. Sorry your mum is going through this. I have pmr which is the sister disease to gca(temporal artiritis) so do not know huge amounts about gca but our resident expert Dorsetlady will be along shortly to give you an introduction to the disease snd what to expect if she is diagnosed, along with others who csn help you all.
It is a scary time for her and her family but we can help with support and advice. Please keep us informed of how things go. YBB
Thank you for the kind words. It’s appreciated.
Could you please give us some more information about your mum like her age and whether or not she is in the uk. This helps our advice to be more precise re drug names etc. This can e done on the profile page.
Hi, mid 70’s and yes we are in the UK. Thanks
Hi daveb77, normally if visual symptoms are experienced they up the dose a bit. I was told to watch for curtain closing... Shutters is near enough to that. Up to 1 in. 5 people don't have raised markers. Have they intimated they will be doing a biopsy.
As she some sight in the eye? I know if all sight is gone that. It is permanently that way I am afraid. But if its an intermittent worsening it could be that it will get a bit better from what others have said. The Dr's really should be considering raisi g pred to a higher dose for visual issues.
I hope it gets sorted ASAP and please return and ask as many questions as you need to. Usually someone can answer but usually during the day. 🌻
Welcome Dave
Sorry to hear about your Mum as YBB has said Dorset Lady is our go to Expert on GCA but is unlikely to be online at this time but will be in the morning & will send you helpful links & will not overwhelm you with information in the beginning.
Kind Regards
MrsN
Moderator
Your poor mother. At least she has been given steroids which should help save her sight. Have they helped her symptoms, headache etc? If not she should ask to increase the dose. This is an illness that you can't hang around with as it can mean if you lose your sight there is no going back. On the blood tests about 20% of people do not have raised blood markers for some unknown reason which makes diagnosis a bit more complicated.
Just so you know, 40 mg is the low end for treating GCA (temporal arteritis). Hopefully it will be enough until she can see a specialist. In the meantime, if her symptoms are not relieved or appear to be worsening it would be wise to increase the dose. I hesitate to recommend this as it's not a good idea for laypeople like ourselves to be recommending high doses of prednisone, so she should be seen by somone who knows what they are doing. If you have to take her to an emergency department make sure they understand the risks to eyesight from GCA. Better that she maybe have "too much" for a day or two than too little and risk irreparable damage to her eyesight.
About halfway through this paper is basic information about GCA including standard treatment.
rcpe.ac.uk/sites/default/fi...
And, as the others have said, the more experienced voice from the UK should be along in the morning.
If there is uncertainty about the dosage I would contact the GP to ask if she should raise it, and if dissatisfied with GP response go back to A&E. Sight is too precious to lose and this Forum knows more about this condition than many GPS. As others have said DorsetLady will help. Good luck. It’s lovely that your Mum has such loving support.
Hi Dave,
Sorry to hear about your mom.
Certainly sounds like TA or GCA (Giant Cell Arteritis) from the head issues, and although the blood marker are normal - that sometimes confuses the issue- she does need more steroids. According to the guidelines 40mg is the starting dose for GCA without eye problems - at least 60mg with them. You need to speak to either GP or Consultant this morning or take her back to A&E.
Leaving it another week MAY mean she’ll lose further sight - 40mg might be enough, but personally if it were my mom I would want it higher.
My sight lose was similar except mind started at the bottom and worked up- unfortunately lost it completely within 4 days, but wasn’t on steroids at all.
This is my intro to living with both illnesses this forum covers which might help you and her - so read it somewhen, but most importantly speak to doctor today -
healthunlocked.com/pmrgcauk...
Please let us know how you get on,
If they started the pred quickly enough after the visual symptoms appeared it may improve but she probably does need more pred as has already been explained by the others - especially if the symptoms aren't improving on 40mg.
Where in the UK are you?
Thank you all for your comments and support it’s much appreciated. Mom is going to call the the gp this morning to try and increase the dosage as her vision hasn’t deteriorated but she still has the headache and neck shoulder stiffness and sore scalp. Many thanks again
After how long on 40mg?
3 days but the headache hasn’t really
Improved
It may take longer - but that is also a sign she really needs more - call her GP urgently and ask for permission. If not - it may be back to A&E.
My headaches didn't go for about a couple of weeks (on 80mg) - but never sure if that was purely GCA or brain adjusting to sight loss.
Hopefully as vision hasn't deteriorated anymore - it won't - but no guarantee - and she should still be on 60mg at least. It may not improve existing eye, but it will protect the other one -which may still be in jeopardy - as that's what needs to be impressed upon GP - or anyone else involved!
They have upped the dosage to 60 mg and the gp said well done to all and he agreed it should have been higher!
Moms vision isn’t really like a shutter she said it’s a different shade or she can see everything but the top part of the vision feels like It’s in the shade of that makes any difference
It is still visual symptom - bad enough if it stays like that but you really mustn't take any risks because once it is gone, that's it.
Thank the GP on our behalf - it's nice to get positive feedback rather than the patient being told not to go online!
Thanks for the update, has an Ophthalmologist looked at her eyes or did the Specialist check her Vision out?
I’m still a bit bothered about the vision & shade/shutter like experience, l’d be inclined to back to A&E to get her vision tested.
Good, glad to hear that.
Mine did feel and still is like looking through a very thick fog! Light still comes in - but cannot distinguish anything - apart from if I hold my hand about 6 inches from bottom right quadrant of eye - and then not very clear.
Your mum’s may improve - or it may not / probably the latter - but you never know.
When she feels able, she may be able to find a support group locally she can go to - it just helps to talk to others - have a look at this -
And she may need extra lighting or bigger print to help her read etc
Please come back for any further info / advice - for you as well as her - it’s good you are supporting her, but you need to know what going on to do that.
Take care.
Very pleased that the dose has been increased and that the advice from the forum has helped. Please keep us up to date on how your mum gets onx
Hi my experience with GCA was that I had real improvement in 48 hours on 60 mg. So much so i was back at work full time. My GP didn't wait for blood tests or anything else. I would quickly go back and discuss an increase in dose.
Like Dorset Lady I too had GCA diagnosed seven years ago. If she is anywhere where they can do an ultrasound this is the best way of confirmation, otherwise a biopsy on one side of the head is done. I had the latter done by the ear. I was started on 60gm of predisolone and needed all of it, without question. I have been one of the lucky ones who did not loose their sight permanently but had turns, probably only lasting seconds where I was looking into opaqueness. It really scared me. From my experience I would say at least 60gm of predisolone. A good rheumatologist is a must. Good luck to you both.
Just to add my two penny worth. When I was diagnosed, I was put straight onto 60 mg of pred per day and I didn't have any eye problems, just the appalling headache and the fatigue. 40 mg sounds a bit low to me too. Good luck to you both - I hope you manage to sort this out soon.
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