Advice needed please.
Posted , 5 users are following.
Hi everyone, I'm new to here, I would really appreciate some advice. I visited my GO in mid June complaining of pain the the left side of my face & temple, with soreness to my scalp. He immediately diadnised GCA and put me on 60 mg pred & 75mg aspirin. I had an emergency appointment with a rheumatologist and I had a biopsy done 29th June, still awaiting results. The rheumatologist suspects I also have polymyalgia. The steroids worked quickly & took away the pain in my face and sore scalp etc. However since the weekend I've had intermittent slight uncomfortable feeling to the same side of my face, should I be feeling this, I'm not sure what's normal? Thank you in advance.
0 likes, 5 replies
EileenH Chickentkerr
Posted
You are on a very high dose of pred and it is unlikely that there is too much to worry about. The pred has made a massive difference - and it does sometimes take a bit longer for things to improve fully. However, if you are really concerned or if you have any visual problems do contact the rheumatologist again - were you given a rheumatology nurse for liaison?
I'm not sure I'd say "also have polymyalgia" - it is a symptom of GCA as opposed to two different illnesses. Some people have GCA without any PMR symptoms but others have PMR as a first sign of GCA. But I suppose everyone has their own view!
As for "what's normal" - i don't think there is a normal! Everyone is different.
Chickentkerr EileenH
Posted
Thank you for your reply. No I wasn't given a number for a rheumatology nurse. I was previously diagnosed with fibromyalgia but the rheumatologist thinks this has been PMR. I appreciate there is no 'normal' but I have no idea if its usual for the feeling of pressure to the side of my face to disappear altogether or if I should expect to have some intermittent discomfort? I haven't had any further visual problems since starting the steroids.
MrsO-UK_Surrey Chickentkerr
Posted
I have experienced both GCA and PMR, and although my head/jaw pain resolved within hours of my first 40mg starting dose, I would occasionally experience bouts of fleeting, jabbing-type pain at the side of my face/temple area. Is this how you would describe your "intermittent discomfort" by any chance? I found that being anywhere near air conditioning or out in the wind would aggravate the problem, so I tried to avoid those like the plague! It's good news that the visual problems have resolved which means that the high dose steroids are doing their job of getting control over the inflammation. The important thing now is to keep on top of that inflammation, remembering that the steroids are not curing anything, they are just damping down the inflammation that causes the symptoms until GCA decides to go completely into remission and that can take anything from two years upwards. So give yourself plenty of TLC and rest, remaining as stress-free as possible, and hopefully your path to remission will continue smoothly.
EileenH Chickentkerr
Posted
As MrsO has said - I think it is "normal" to continue to feel some symptoms for some time, if there is nerve damage it could be for some considerable time. the crux at the outset is, are the symptoms very much better? And they are. Any return or worsening of what you had after a few days should be of concern until shown to be otherwise.
If you are in the UK I'm very surprised you haven't been given a contact - this sort of thing is really beyond the average GP and specialist nurses are usually the mediator between patient and consultant.
Chickentkerr EileenH
Posted
Yes the symptoms are much better, I just didn't know if it was usual to have days where I may experience slight pressure to the temple or the left hand side of my face. I am in the UK and have not been give details of contact for any specialist nurse.