Hi Everyone and thank you all for your replies to my other post
I have another couple of questions which may sound pretty stupid but as I said I'm just trying to get to grips with all this.
Firstly ever since this started about 6 weeks ago I have had a dry cough - not even a cough really - just an irritating tickle which makes me want to clear my throat a lot. Has anyone had anything similar or is it just a coincidence it all happened at the same time ?
Secondly my consultant told me to just keep an eye out for any signs of GCA. I don't have any scalp or jaw pain at all but I am always prone to niggly headaches particularly in hot or humid weather so am worried I might not realise it's a different headache. I'm giving myself a headache worrying if I might have a headache.... Will I know if it's anything to worry about ?
Sorry to be asking all these questions.
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lindtbunnynut
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This is almost the same as I put on the other thread:
There are no stupid questions - I know a lot of answers after 10+ years in the field, but why should you? And don't apologise for asking - that's why we're here!
A tickly cough CAN be a sign that arteries in the chest are involved. I had a sore throat and cough from early in my PMR journey which does improve with higher doses of pred and I also had scalp pain and jaw claudication pain for some weeks which then resolved (without pred at that stage). The consensus is I did have large vessel vasculitis but it stopped of its own accord just leaving PMR.
Most people would say the headache is like no other they have ever had - but in fact only about half of GCA patients start with a headache although about 70% do at some point. Position is important - around the temples or low at the back of the head are likely places - occipital is the medical term, where the knowledge bump is.
What other symptoms did he mention? We now know our ears can be involved so watch out for hearing loss or vertigo/poor balance.
He did mention blurred vision which I don't have and also loss of balance but as I suffer from vertigo from time to time that one might be difficult to spot.
I am glad you mentioned the ears b/c my balance is very poor. I walk like I am drunk, staggering all over. I cannot take the stairs. I have fallen about 5 or six times since last January. My hairdresser has Parkinson's Disease, and she needs to help me down the stairs!
My hearing is fine, but balance is very off. I was beginning to think that it was a neurological problem; everyone has fallen on occasion, but I think this falling , even if not hurt, triggers a relapse. It certainly seems to be a cause. And it's usually a shoulder, and then the one not injured starts acting up again.
Would you see a neurologist, or do you think it is a result of GCA?
I was never diagnosed with GCA though I probably do have large vessel vasculitis. But poor balance is also not uncommon in PMR and is probably related to poor muscle function so your legs aren't working as well as they might. Any of us, poor balance or not, can have the experience of a fall or injury leading to a relapse.
I suppose seeing a neurologist would lead to other things being ruled out. It is, after all, possible to have other disorders as well. There is a lady on the forum with PMR who also has a diagnosis of MS>
I always start having coughing fits, especially at night and early morning's. When I took uncoated pred it worsened and if I too zantac a few days it stopped. I think it was acid reflux.
That said, if you do get other symptoms follow the gca advice! Better safe than sorry.🌻
My own headache seemed very unusual in its position - at the sides especially the right side near the ear and at the back, but not towards the front of the head like the kind of tension headaches I'd had before. It also seemed odd because it was evidently located just below the skin, rather than within the skull which had been the case with other headaches I'd experienced. It was worst at night when I was trying to sleep. Most importantly it didn't respond to normal painkillers like aspirin or paracetemol which I'd always found effective for other headaches. I didn't have the jaw claudication that many people experience. I had a biopsy the day after GCA was diagnosed and it was definitely positive.
Any headache that doesn't follow your usual pattern and doesn't resolve itself with your usual techniques and within the usual time frame needs to be investigated. If that happens, make sure you tell your service provider you have PMR and are concerned about GCA. They are more likely to look for stroke or trauma than they are to think of GCA without prompting. They also may think you're having heart trouble because especially women report arm, shoulder, back and jaw pain as symptoms, rather than chest pain.
BTW: when it's hot and or humid, make sure you're upping your usual intake of water (as opposed to any other liquid). Being dehydrated can cause headaches.
And here's an anecdote about "stupid questions": I'm a New York City kid, and until very recently, deer had long since disappeared from our environs (they're making a comeback).
As a young professional, I was on a road trip with several colleagues to attend a conference at a resort up in the Catskill Mountains. All along the way, I kept seeing road signs posted that said "Deer Crossing". Now, I was familiar with such signs for "School Crossing", but had never seen one for deer.
Eventually, I asked the car full of colleagues "How do the deer know where to cross the road?"
Forty plus years later, I'm still living that one down.
I agree with this advice. If you are worried about a headache, rather than waiting for an appointment, go to the A&E department of your consultant's hospital, give them your hospital number and say you need to see somebody from rheumatology urgently. Tell them the rheumatologist told you to look out for certain symptoms, which you think you now have, and to report them immediately as there's a risk you could lose your sight if you're not treated.
I have GCA, not PMR. Prior to my diagnosis in February of 2018, I had been having aches and pains, fatigue, chills, and low fever for weeks. It was flu season and I figured I had a mild case. I was living on the sofa, all bundled up, hoping to recover in time for hip surgery. Then my scalp became sore. I started icing it with a bag of frozen peas. I also had some dull throbbing behind one eye or the other. After a few days I developed quick zaps of sharp pain that would travel up various areas of my scalp. It felt like electricity following one nerve or another. Looking at an illustration of the arteries in the scalp, I knew the pains were following the arteries. My GP fit me in for an exam and immediately sent me to the hospital for a CT scan (negative) and blood work (highly elevated markers). I began 60 mgs Prednisone that day and within two or three days, all of my symptoms had vanished. I'm not sure my presentation was typical but it was certainly memorable. Best of luck to you.
My GCA headache was like no other, right sided and made my head so heavy I could hardly lift my head up, I felt nauseous but was never sick. it went on for a couple of months and was treated for migraines, which I knew it wasn't. I didn't have jaw claudication but did have numbness down the affected side. I had a lot of visual disturbance until things came to a head when I lost the sight on one eye. I was fast tracked and diagnosed with GCA within 24 hours. Lucky I had such a good GP who was on the ball with GCA. I got PMR the year after.
I don't think your headache would go if it was the GCA.
I had lots of tests in the early days as each symptom came ie TIA clinic for the jaw numbness, then Maxillofacial investigation for jaw misalignment. Non were positive and put it down to migraines. I knew it wasn't as I suffered them for years when going through the menopause.
Once on pred I started with a cough and have had it ever since, 5 years 6 months. I get frequent chest infections in winter which take up to 3 courses of antis each time. I'm also left with crackles on the chest, they eventually go but take some time. I use Pholcodine cough medicine, as recommended by GP, for the dry cough, it's OT C now as cannot be prescribed. I also use artificial saliva for the dry throat and it helps the cough to subside.
Try some simple breathing relaxation techniques as often as you can.
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PMR - increased risk of GCA
PMR flare or just PMR?
Not PMR
**** no PMR !!!***
