Hi all not been on for a while but been keeping up with the discussions.
I've Had GCA for 12 months now & with the ups & downs that come with it but the latest one is head pain not had this one with the disease left side & it hurts so lucky to strike the right doc sometimes gee this all helps as you all can imagine. Managed to get down to 10mg of pred lost 4kilo 4 & half cm of waist 6 kilo to go then I'll be at where I started anyways starting to feel good been sitting good on this for 6 weeks now the head pain so increase to 25mg of pred been told to stay with this increase for 3 days and see how I go. Better than what my GP said he suggested go home lay down have an Endone see how that goes anyway bit of raving! Anyone with GCA that has the head pain I got more problems with arteries than the head
I too have had GCA for about the same length of time---since July 2016---and am now down to 7 mg of Pred---going to 6 mg this weekend---doing 1 mg reduction per month. I have occasional, random short stabs of pain on the left side of my head and sometimes on the top---just enough to make me worry about a stroke or some such thing---the MRIs say this isn't a possibility. Hmmm. Also ongoing neck ache which waxes and wanes. I suggested to my rheumatologist that this might be a flare and might I need to increase, but he tells me not to worry---stay with the schedule. I am wondering if the head stabs are due to the disease or the drug?
I also have weak upper back arm muscles that go into a cramp if I try to lift anything heavy by extending my arms, along with calf cramps if I spontaneously stretch in the morning without wiggling my toes first! This is such a frustrating disease! I now understand medical "practice".
I am not complaining---but rather I am curious if these are symptoms shared by other GCA victims and what other symptoms they have. And whether these nuisance "things" are due to the disease or the drug. I frequently worry about just how knowledgeable the so-called experts really are!!
Thankyou for your reply yep at first I thought brain bleed clot all the bad things and of course the blindness. We put our lives in there hands but I know when I'm feeling a flare and sometimes I wish they'd list when you have blood test mine come back they say yep all good keep going but another doc told me that if your flaring it wont sh artery and stenosis at the left subclavian ow cause i'm already on pred I don't know. I have damage from this disease already my left occluded common carotid artery & ct showing left subclavian. when diagnosed my CRP was 8 and my ESR was only 30 the artery on my left side will not open and surgery is not an option I may not survive but for my left arm could put a stint in time tells. So you can never go by blood tests!
Glad to talk to someone with GCA
I do not have GCA, but PMR on too much Predinisone, but I will not reduce my dose if I am not pain free. The Rheumatologist was not happy but stated this my body, I want off the Pred as fast as I can. But after a flare that put over top, coming down at my pace, listening to my body!
How much Prednisone are you taking and how often have you had flares and increased the dose and how long before you then reduced it? This is a maddening condition/disease. I've not had a big weight gain, nor have I lost any weight. The redistribution of fat (ugh!) is quite another thing---that plus I think my skin has aged 10 years in the past 10 months. I got some of the basic gel that has been recommended, but its kind of greasy so difficult to find the right time to use it. Anybody else have the skin issue??
And the abdomen and back of the neck puffiness? The puffy cheeks are a given!!
Currently 27 1/2 down from 30 mg, was down to 7 mg when my flare occurred. Had to go to 30 mg to get any relief. The Rheumy wanted me to reduce the 30 mg, told her I would as soon as I was pain free. Will reduce that way never more than 10% till 10 mg then DSNS. Hope that helps! Got to stay positive!
The cramps MAY be due to a lack of magnesium - I used to get similar cramps which were improved a lot by taking magnesium supplements. It is a common recommendation from doctors here in central Europe where I live. It is worth trying.
The occluded carotid and subclavian arteries may not be due to the GCA, They are usually separate conditions that should be ruled out in the differential diagnosis before deciding on GCA.
The head pains may be GCA - but they could also be due to pinched nerves or damaged nerves due to poor blood supply. Or even spasmed muscles doing the same thing.
Yes the major artery problem could be separate issue & the head pain is bad been with me since Tuesday gone. Been back to hospital today upping the meds to 25 from 10 didn't make a difference so doc says go back to 10 and take the pain killers regular over it yes I had no head pain when first diagnosed who says I haven't got it now & hospital tells me it's not an emergency & for me to see doc to explore head I don't know
Eileen,
Thanks so much for the magnesium reminder. I used to take it randomly and apparently old age requires that I be more regular than random. I've just begun 6 mg of Prenisone and hoping maybe some of the side effects will dissipate. Hard to know what's causing what. Still, I continue to breathe which is a plus!
Thanks again for your insight. This is a wonderful site, due to people like you!
Absolutely - it might hurt but we can still get out of bed!
Hello all pain in head is shingles and gee the pain is up there in the really bad list tablete for a week then go back and see Doc
Also the pain is behind my left eye the eye is swollen shut and no visual problem yet hope I got it in time
Ouch - shingles that affects they eye is nasty - I do hope the antiviral tablets help.
Alley2, I'm so sorry. Hope the anti-virals kick in very quickly. ❤
It is indeed helpful to communicate with another GCA victim. I can go for a couple of days relatively symptom free and then out of nowhere I get a headache on the top of my head extending above my left eye---not excruciating, but lasts most of the day to the point I take a Tylenol to get to sleep. Another bizarre thing I have has to do with my sense of smell. I am plagued with strange recurring unidentifiable smells that last from minutes to an hour---usually at night. The other night I awoke at 2 am with one of those odd smells along with the headache I went to bed with.
Eventually got back to sleep---when I awoke the smell was gone and the headache almost gone. Today---two days later--- I feel great. What the heck is going on??
Is the headache a flare signal? Frustration galore!
Next time you see your doctor I think you should mention the recurring smells thing.
Yes - I agree with Anhaga, Phantosmia (phantom smells) is often harmless and for no reason that is ever discovered or something like an infection but there are other more serious causes. I think that if you already have GCA then it should be checked out. It could be a flare of the vasculitis that has a similar effect to a head injury for example. That said, it is more likely to be harmless than not - but you can't be sure.