The disease that drives us crazy: diagnosing GCA ... - PMRGCAuk
The disease that drives us crazy: diagnosing GCA vs PMR
Seems that not many do diagnose it,in my case I lost sight in one eye because of misdiagnosis of GCA!x😜
hmmm, who does he think it drives crazy? The docs or the patients? Hope he never gets PMR or GCA.
Interesting commentary though. He mentions shoulder involvement. My shoulder area has never been anywhere near as bad as my hip girdle and thighs, so I can still swim crawl with ease, but walking any distance soon becomes excruciatingly painful. Though, my neck muscles and lats are badly affected. The diagram of affected body parts that DL has posted in the past was reassuring that I did fit the pattern.
He mentions unexplained cough as part of a PMR diagnosis. I wonder how many HCPs realise that. And I also wonder what the cough is due to, presumably inflammation in the vessels to the lungs? I had thought my night cough was due to worsening asthma and my asthma nurse certainly assumed that. It never responded to inhaled corticosteroids, until I switched from beclamethasone to the turbohaler with both preventer and long acting reliever. Now I wonder if my apparent worsening asthma was due to the PMR.
Had never associated the night sweats with the PMR, but they do kick off about 4.30 am every night.
Too right, sight loss is a medical emergency. I'm sorry that needs pointing out. Thank goodness my GP is alert to the possibility of me developing GCA and questions me on the relevant symptoms every time I go to see him about my PMR.
Lucky you!I saw 3 different docs at my practice and 1 private!😱Wasnt until I lost sight that people started jumping around.Too late then .Sorry about all your aches and pains.Cold weather seems to exacerbate it in my case.Time to get winter woolies out or turn heating up methinks!x😜🌼
oh yes, the recent damp weather is really playing havoc with my knees atm. The GP I see now is the one who originally diagnosed my PMR. I was complaining about my jaw and he used the fast track to get me seen by an ophthalmologist the very next day. I seem to be on some kind of follow up list now, even though I have PMR and not been diagnosed with GCA. I think I have been lucky with this GP. The others have not been quite so good.
Yes you are very lucky indeed.I have been given a video to watch by PMRpro to see if it will help with my skull neck problems.Trouble with GCA one can’t be too careful about head symptoms.Frightens the life out of me,don’t want to lose other eye!Rain just is not stopping, lying on sofa with neck hot water bottle.Dont feel like. doing much else!xx🌼😜
Same. Time for my afternoon nap.
Wish I could sleep during day!OH could sleep on a cheese wire ,anytime .I can only sleep when it is bedtime.Sweet dreams!xx🌼😜😴😴😴
Thanks for mentioning night sweats. Before I was diagnosed I could not understand why I would wake in the night wringing wet and have to change PJs. I am well post menopause. Now I get it 🙂
I hadn't linked night sweats with the PMR either before I read that article. Had rather assumed it might be my blood sugar. Interesting one.
If I have sugar, especially in the evening, I wake up with dry mouth, thirsty and sweaty in the night
I mostly avoid sugar now, except for in my cup of coffee when I wake.
I really should, especially with a FH of diabetes, but I'm a little bit addicted. I'm getting better.Perhaps I could do a slow taper of sugar.
Personally, I think cold turkey is the way to go with sugar. Just cut out any foods with added sugar and go easy on white starchy carbs. Give your self just 3 days to stick to it, at first, and see how you feel. After the first week, my cravings and attacks of the munchies just stopped. If I do have sugar or a high carb meal, I try to time it for when I am going to use the energy. I try to follow the lifestyle recommendations that I learnt from the diabetes prevention programme to help manage appetite. It works.
Just 3 days eh? Did you get sugar withdrawal?My hubby has a sweet tooth so I make cakes and desserts, but he is a runner and goes to the gym and works out, I do not.
When we get home I will give this some serious thought
The reason I said 3 days is that it is a manageable amount of time and then I add another 3 days. It's a little psychological trick that works for me. Thinking back, to when I started pred, I reckon that it took 1-2 weeks before I got the cravings under control. No sugar withdrawal for me whatsoever. I'm not convinced that there is such a thing as sugar addiction. It's a modern construct designed to get you to spend money on cranky diets, books and videos.
What I do believe happens is that there is a physiological response to insulin. If you eat a meal that is very high in carbs that makes your blood sugar shoot up, your body over compensates with too much insulin, which causes your blood sugar to drop and then you feel hungry again. If you eat in a way that stabilises blood sugar, that happens much less. Eating foods that have low glycaemic index slows down the absorption and keeps you feeling satisfied for longer. Avoid added sugar, limit white starchy carbs, vegetables and fibre with every meal, good quality protein with each meal to keep you feeling full, drinking enough water, evenly spaced meals, and as much as possible continuous low level activity. I also avoid saturated fats as much as possible as they are just unwanted calories. This is the basis of the diabetes prevention programme (that I keep banging on about), designed to stabilise blood sugar. I've oversimplified it a bit, but that's the basics.
Anyway, I would ditch the cakes for sure, lovely as they are. It helps me not to have any of the foods in the house that lead me into over eating. For example, although nuts are supposed to be good as long as you don't over do it, I know that I will scoff the whole bag, so I don't have them in the house.
In terms of having it in tea/coffee, halve the amount again and again, Then say , no more once your taste buds have got used to coffee with little sugar. One lady used to recommend much the same for other sugar and carbs, halve it first, halve it again and then stop. For some people just stopping can leave them feeling deprived and they give in. And some find the physical adjustment hard which the halving helps with.
I've never had it in tea and coffee. It's home made shortbread my weakness, and licking out the baking bowl as I did as a child 😋
Ah yes ... Familiar story
I think that finding ways to avoid a sense of deprivation is really important and different things work for different people. If I told myself that I could never eat crisps or never have ice cream ever again, then I know that I would crack, but if I know that I could have it if I really wanted it, I am fine. Although I am pretty good at sticking to low carb most of the time, I allow myself a treat now and again, if I really want it. I usually find that a single indulgence is enough to keep me on track for another 2 or 3 weeks. What is critical for me is that I never allow myself to get too hungry as that is the weak point where I give in. It is also the reason I have to be careful with alcohol. It lowers inhibitions and it messes with blood sugar, so I am more likely to indulge in foods that I will regret later.
Little Jane,Me too! I also notice if I brush my teeth close to bedtime with fluoride toothpaste I have horrible dry mouth. I going to find a fluoride-free toothpaste for nighttime
It is more common with GCA but it does happen with "just" PMR symptoms.
Do you mean the night sweats are more common with GCA, pro?
Yes. It is a recognised symptoms in GCA, Not mentioned as much for PMR though we know it does happen
So hard to pin these things down to the actual cause isn't it? I get night sweats in the early hours every night, always at about the same time, and it wakes me. I had always thought blood sugar, but I don't always go to the bed at the same time or eat at exactly the same time in the evening. So when I saw that comment in the article, I thought maybe, maybe it isn't the blood sugar.
4-4.30-ish????
yep. 
Spot on, around 4.30, just when the cytokines kick off. And just when the stiffness starts. If I wake before then to go to the bathroom, I am never stiff.
That's the cause of the sweats! Always got me too - if I'm late with my pred at bedtime, still does. I wake with a sort of tingling sensation all over. Same with the stiffness soo originally - I would get up at 3am, no problem, but get up at 5am, stiff! Doesn't happen with Lodotra unless I'm very late taking it.
Some pearls there - above all the headache and the temporal artery stuff - but some drivel too Mr Posh Broccoli! What is so different about treating GCA or PMR? Shoulders aren't essential and there are cases with minimal morning stiffness. And above all, catch up with the latest thinking that they are part of a spectrum of the same disease.
"Fascinate", "love to see" - not in our experience.
Obviously led a sheltered life if he’s not come across this -
I have never had a patient in my life say, ‘I have had claudication in my jaw,’” he said.
or anyone younger -
Also, what is a normal CRP and ESR in a 75-year-old person?” he said. “This is not a crisp and clear picture.
Well quite - they might not use the word claudication so it is up to him to recognise "my jaw hurts when I chew". Though someone who'd asked here would know the word because we use it.
When I commented to the ophthalmologist that my jaw didn't hurt when I chew, it's just stiff and painful when I try to open wide, she said that is all some people get. After talking to her, I think that now I would suggest to anyone who has any kind of jaw discomfort to get it checked out, especially if they had any of the other signs of GCA. Better to have a false alarm than miss the signs.
Mr Posh Broccoli 🤣🤣🤣
Mr Posh 🥦 🤣
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