Ok you guys know positive TA biopsy about 27th July this year. Been on 50 pred, then 60mg.
Away visiting daughter grandkids, overdoing it blah blah. Today after 6 hour of 2 sleep sets, woke sort of ok had endone 10mg's and panadol (trying to keep a 4 hour routine because of headaches). So dosed at 6am then not till 11am ( had a relaxation massage ) then not till 5pm with pain meds. Now it is 9.21pm. Went out for dinner ( been drinking quite a bit of wine and beer ), fantastic night with husband. Took 2 endone and 2 panadol at 9pm. My head is still killing me ( yes it it TA pain ) Will give it an hour and then try a dilaudid..
My question is if the pain does not resolve am I still at risk of losing my sight?
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Rowboat
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You could be. Ordinary painkillers will do NOTHING if what is causing the pain is GCA. The pain is due to reduced oxygen supply to an area of tissue. Painkillers will neither improve the blood supply nor stop the pain - only combating the inflammation and swelling that is causing the symptoms will do that. That means enough pred to work.
I can't say it any more clearly than this: you have a SERIOUS systemic illness that constitutes a medical emergency when it starts, no different from a heart attack or a stroke. Only you can choose to accept that you have GCA and are unwell. But you need rest and recuperation and what you are doing is neither. You also need an adequate dose of pred and in a single dose - I'm really not clear what you are taking when.
Diagnosed with GCA 27th July and you are still not accepting what is a sight loss situation and once it goes, either partially or totally it is gone.
You need to stop and take stock and fast.............GCA is not something to be played around with and and treated with such disdain - or it's just like a cold. It is not.
No headache tablet will do anything for GCA.
Would you treat a heart attack, a stroke in such a cavalier way?
PMRpro has been restrained in her reply..........and you should block, copy and print.
Totally agree with others - no need to elaborate, other than to say PRED in one dose first thing with breakfast. Stop all the other painkillers, not doing anything for GCA, moderate your life style - you don't have to be become a nun, but you need to realise this is a serious illness - so give it the respect it deserves.
If headaches continue the Pred needs to be increased, whether that by Rheumy, GP, A&E or you.
I disagree with the all knowing Lady D. I say become a nun, stringently adhere to all recommendations from experts on the forum to preserve your health, do for yourself first, others later. Think of putting oxygen mask on a plane...they tell you to put your mask on first before the child's.
Thanks for replies. Just had a couple of Phone GP consults ( same doc ) and his and my conclusion is that if my vision has not worsened over the last 2 weeks I should be fine tonight. He also soid if vision worsens or I get neurological symptoms go straight to hospital.
Yes I am stupid I have been overdoing it, I know it is serious but I needed to do these things for my daughter. Whether that was right or wrong who knows but I had to.
Will be home in less than 48 hours and I will rest and pace. I will also try and find a specialist that will see me before November. Tomorrow I will increase pred from 60 to 65.
You have to think of it in a different way, You "needed" to do these things - this week. But think what COULD happen and if you lost your sight then you wouldn't be able to do these things for her ever again. Once it has gone it has gone and no turning back.
I don't agree with your doctor either - there are patients who have no symptoms and wake up blind, there are patients who have one little episode and the optician/doctor thinks "it'll be fine until ..." and it isn't. He doesn't have a crystal ball.
I don't want to sound OTT - but there are a lot of people who are now dependent on others for almost everything because they or their medical team dismissed concerns as you and yours are.
Your medic has a crystal ball................! and '"is and my conclusion is that......................."
There is no such thing as 'had to' not if you want to keep your sight.
I had to cancel a three month trip, long planned and saved for within 48 hours of being diagnosed with GCA. My travelling companions went without me and another friend who could not afford it, got a freebie. There was no 'had to' even considered.
If it is not 'holding at 60mg and need to go up to 65mg - you are in trouble most who need more than 60mg or have been admitted as an emergency and 60mg is not holding it are then nearly all hospitalized and on an intravenous drip till it settles down.
Please please take it seriously. It certainly looks like you have giant cell arteritis (GCA). Push your doctor to have tests done. The condition starves your eyes, jaws (and no one wants jaw death!!) and if the inflammation is not treated immediately, if pressure on the back of the eyes continues, there's a good chance you'd lose the sight in one (or both) eyes. And that's irreversible.
GPs are not qualified to handle these special diagnoses. I had blinding headaches, jaw claudication (could hardly chew or swallow) took ibuprofen like it was going out of fashion but when my eyes played tricks, produced auras (blinding flashes, partial loss of sight - that lasted seconds) I was sent to the diagnostic clinic in our local hospital. There, I had X-rays, CT scans, ultrasound scan etc, blood tests, blood pressure tests, consultations by neurologist, cardiologist, rheumatologist and eye specialist who ordered a temporal biopsy that confirmed GCA. Immediately put on high dosage (60mg) prednisone and within a couple of weeks, CRP dropped from staggering 76 to 4!! After that, the headaches disappeared. That was in December 2016. Now, under regular monitoring by Rheumatologist and my excellent GP, and they are very pleased. Their management has gone to plan. All that's left now is to slowly reduce Prednisone. Currently on 6mg. Feel so much better.
Don't delay - and best of luck Rowboat. Cheers from Auckland, New Zealand.
Hi Rowboat the experts have given their views - excellent as always - you have been lucky enough to have been diagnosed with GCA before any lasting damage has occurred. Strange words??? not really I was diagnosed with GCA before my biopsy and was put on 80mg pred immediately, I had no real systems of this except for a blurring in left eye. I had severe PMR which had not been diagnosed before I saw the eye consultant. The meds started on a Saturday, the biopsy happened on the Tuesday, on the Thursday I had a major op = On the Friday I woke up with damage to my left eye PLUS substantial damage to my right eye [ which the eye consult had hoped to protect ] I finished up on 100mg pred frip for 3 days. I need help with so many things now life has changed completely. Your syptoms are a severe warning please listen to your body and protect what is so precious. Love Cath 1602 xxx
Thanks all again. No I guess they have no idea. Daughter and son in law just ignore it. Husband is extremely supportive and worried about me but doe not like discussing it and I have tried to get him to read this post but so far no luck. I have an appointment on Monday with a respiratory specialist at 12-50 pm. Sounds weird but he was the one treating me in hospital when I was diagnosed. He is a very serious person, no experience with TA but researched some stuff to help me. I had asked if he would take on my aftercare and he said he would. ( i have mild emphysema ). i tried to get back into the Neurologist and was told 30th November so this doc i see on Monday is my best bet. And yes you have scared the s***t out of me but I needed you too so thanks all again. Going home today
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