Question time please for GCA people.
Since starting GCA I was on 40mg for a week then it was incresed to 60mg.
This is my third day on 60mg and I have jaw ache coming back.
What do you think is this something I should be bothered about ?
Or is it normal ?
What sort of jaw ache? Is it continuous or intermittent and do certain things worsen it? High dose Pred weakened my muscles and as a result upset my TM joint in the jaw. This caused headaches and pains but it wasn’t really feel like jaw claudication that was more like a cramping fatigue of the muscle when chewing rather like a muscle when you’re going anaerobic exercising.
OK this morning , continuous after lunch today when I did eat some firm veg. Still there now and I have not talked or moved my jaw for a while.
I have some pain in the same side temple artery area which I am not so bothered about I am told Jaw claudication if this is what it is ? Could be more of an issue that I should be careful of and possibly do something about like tell the GP or something ?
Thing is I'm not very experianced with Jaw pain issues. This is only the second time I have had them.
Personally I would take medical advice about a higher dose. Some people take 80 mgs as a starting dose. The consequences are so severe that I would rather be completely safeguarded.
Your dose is not controlling it..............you need to either ring your Consultant or visit your GP. Do not delay, your eyesight is precious.
Many thanks for the valuable and useful replies. After posting the thread here the symptoms went into decline ( Supper magic health unlocked ! ) Just got out of bed for a cup of tea as you do on 60mg at 4.30am and my head and jaw are totally free and clear of any aches and pains of any kind. Everything now feels fine.
I now think 40mg was not quite enough during the first week for my body weight. I believe I should have taken 0.75mg per 1kg of body weight as defined under management of GCA by NICE ( 40mg would be for someone about 54Kg or 8.5 stone ).
As I'm circa 80kg about 60mgs by the calculation I believe I should have been on 60mg from the start of suspect GCA and because of this it carried on building up a little rather than declining.
When I started to get GCA the defining symptoms to end up diagnosing it was on the the left hand side of the head. I didn't have much effect on the right hand side.
This last little episode left the left hand side fine and the right hand side had the issue.
I checked all the way through this time and the arteries on both sides had a good pulse and the arteries didn't come up ie didn't get bigger only just slightly raised to the touch and not tender to the touch. This suggests there is still blood flow to somewhere hope fully useful !
Its like as if the GCA has left the LHS and had a go at trying somewhere else in this case the RHS.
Have now phoned a consultant I happen to have in the family that has talked thought GCA with others. She confirmed exactly what I suspected and why I posted the thread ie I thought it should not be getting worse and we then more or less decide that because this is atypical of GCA response to Prednisolone A & E was an option at the time. But as its now gone away completely it could possibly wait until the morning to decide who / where to go like the GP / phone the GP etc if all the symptoms stay away.
I'm going straight to A & E if it comes back in the mean time.
Ps You have to look on the funny side I think attitude is very valuable in keeping up moral. Taking up studying another skill , language etc is supposed to help stop people developing dementia as you get older. All this learning about PMR / GCA must be a good thing for that. I'm a fast learner, the way I'm going I'll end up taking another degree in it and could end up giving the medical profession headaches instead LOL.
A good assessment. Your final paragraph is spot on. Knowledge is power, until you meet a doctor from planet zog.x
All I would have said has been said - so I'll shut up...
Hello
I started with jaw pain - Couldn't chew. Went to the Doc. I was told not to worry. About five weeks later I encountered left side scalp pain. Went to the Doc. I was then diagnosed with trigeminal neuralgia. Ten days later I lost the sight of my right eye - to this thing called GCA. I was given 1000 mg intravenously of some steroid formulation per day for three days to try to save my second eye. Then 60 mg of prednisolone/day - etc. etc.
Just saying............
You need to bang your biggest drum my friend - and quickly.
One Eyed Jack
Drum rolling R- Consultant / GP talking together to decide if I go up to 80mg or go to hospital and deciding time of Biopsy talking to each other on the phone as I type this. I know this because I have just had a phone call to tell me from the GP's.
Phone beside the computer waiting for one or the other to phone me back with one or all of the following .....
Get into hospital again for us to put a hose pipe into your plumbing with some drain cleaner ( intravenous steroids) in it.
+ or - Come here we want to cut your head open and take some of the plumbing out you don't need to look at it ( biopsy ).
And / Or take 14 little white pills ( 5mg oral pred) instead of 12 little while pills so I can fly round 24 hours a day without sleeping instead of 23 hours a day.
I do know how serious it all is, I really do. I'm just totally calm about it. This may be partly due to having read the statistical probability and sight loss data from studies done by Dr Dasgupta et al.
Knowledge concurs fear as they say.
It is also due a past life where I have been in lethal situations far more dangerous than I am in now and and my brain has been acclimatised to this sort of situation.
OK - That's good. It does indeed sound as though you are "On your case".
It's come back exactly as the newly qualified Google 8 week crash course all night school Dr Survivalist had already concluded all by himself. LOL
You got to laugh, the internet if you can read all the medical reports and research material fast enough is just like having 1000 GP's and R-consultants talking to you all at once.
I was amusing myself at one point in thinking reading All the research material re 40- 60mg + levels and sight loss statistics in GCA within medicated group studies Dasgupta el al +++ would give anyone eye strain and headaches.
I have just put down the phone from the GP after the GP has consulted with the duty R-Consultant
and reconsidered the case.
Instructions are to stay on 60mg until instructed otherwise.
Any further symptom changes I am to phone them except for obviously if I actually do have vision issues and then straight to A & E.
Due to the addition of confirmed claudication that has been incurring after seeing the R-consultant there is now a very subtle change to instructions with regard to medication. The original instructions were to reduce to 50mg after the first week on 60mg. Then If I had returning symptoms on 50mg to go back up to 60mg.
Due to the additional information I am now instructed not to reduce for any reason until instructed to reduce . This just means even if everything appears OK after the next 2 days ( I'm on the 5th day of the first week) I still stay on 60mg.
As It happens there is no way I would have reduced the medication level without further medical advice in my situation anyway but they don't know that.
These changes in instructions are only required for someone as high as a kite on Prednisolone with virtually no sleep for a few days that doesn't think like Einstein any more. OK I give in on that one point now. I cant think quite as fast now I now deliberately and methodically double check everything particularly the medication. I even have to cut up the strips to the right dose before I take them out of the blister pack or I could possibly miss count taking them out one at a time.
The biopsy is scheduled as urgent anyway and they feel it will still be quick enough to find cells even if I stay on 60mg beyond a week.
If the cells are there in the first place!!! No giant cells in the sample doesn't mean it isn't GCA, just means they didn't find giant cells. Where are you?
Where am I ? Here as in at home. Nope you didn't mean that. Ha great its a a test? You want to know where I think I am going to be as me after the biopsy, got it now. And for the quite reasonably implied sub text “ why bother to have the biopsy maybe ? ”
Forgive me please. I'm finding everything hysterically funny, its the medication I think.
So this is for upgrading me to goggle night school R- consultant within a 9 weeks deadline or do I take that test after the biopsy when I might be able to cheat a bit because I get snippets from the real world as well as the internet. I bet I'm not allowed to ask a friend though LOL
Well I'm up for a challenge let me see after many nights without sleep I should pass this one and not even know I have or haven't .
As we know already it goes like this, only two possible outcomes ? Just faintly three like a some other alien thing in the tubey bits inside my head. Maybe we should forget about that as if this goes on much longer I will be seeing little green men anyway.
First sensible possible outcome then. No giant glowing green cells but the statistics still say highly likely GCA because of the diagnosis now firmly confirms GCA anyway .
Second more useful outcome ? If Cells found definitely Got GCA as nothing else makes green slugs appear in your head.
Difference ? well not a lot so now this is just a new type of spot the difference game .
Upside of finding any giant glowing green cells maybe defines how invasive the giant cells are in that one place as in indication of degree of severity elsewhere, maybe maybe not … Grief this is difficult I must have real pred head there is not much to go on here.
Downside waist of time because nobody in there right mind is going to assume its not still GCA if nothing found ( well I'm not going to let them assume its not GCA now anyway)
Addition down side faintly possible somebody will slip with the carving knife or I'm configured Atypically inside and cut something like my eyebrows off instead and I will look worse or perform worse than I will do on the steroids anyway.
Humm difficult to see the future is ( quoting star was Master Jedi Yoda)
Let the force be with me then
Do I care about the biopsy risk ? Do I go do a post grad research fellowship over night on how many people end up with droopy faces from accidental caving knife attacks during GCA biopsies etc before I take the plunge into this risk without a health and safety assessment of the outcome ?
Well that will give me something to do for the next 24 hours wide awake all day and night so that's OK then.
I think you need to see your doctor urgently - you are showing signs of mental health effects of corticosteroids. Do you have someone with you at present? Perhaps call 111???
I meant where in the UK are you. Is there a GCA fasttrack service near you?
Cornwall no idea if its a fast track service but told to expecting a call for a biopsy this week
Ps Not had a lot of sleep but I'm mentally 99% . I'm just making fun out of the situation I'm in rather than worrying about it. And its OK there is someone here with me.
Hang on 111 love it, I don't know about mental but some of the procedures followed at 111 do appear severely lacking in common sense borderline I would say.
I wondered if you were near any I know of - can't find anything for Truro though.
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