Return of GCA?

Thank you for your quick reply Anhaga, I value it immensely. Yes, you are correct, headaches go with Prolia, and GCA, but this is definitely not a headache, its a painful area on the temple, exactly where the biopsy was done on the left side, but oddly enough it can also present with a sore spot ocasionally on the right temple as well ...much milder though and its not  permanent  like it is on the left. It feels like I've been wearing my motor bike helmet all day, and it's squashed my head in. It makes me wonder whether there is pressure of some sort building in the artery, hence why I wondered if a "shot" of extra pred might give me an indication/relief.  I'm pretty sure thats what the rheumy and my GP will advise but I don''t see the rheumy for another 4 weeks. I could get in sooner though I'm sure, given the symptoms.  I just hope I'm not in for another biopsy. Bearing in mind since the Prolia 4 weeks ago, I've also started getting the aches and pains back, as if the PMR is kicking up a notch, but again that could be the Prolia. I just don't know how to tell the difference.  

With the bones, well, it was quite a shock diagnosis, and have obviously had it for many years without syptoms...still have no symptoms. Pre- PMR/GCA I have always been very fit, walk, do a bit of  yoga and exercise to keep supple as  I got older (now 62), am slim, active and still bounce around the house dancing at every opportunity. I do "ball" excercise for balance, and resistance band exercises as well., and as often as possible get in our pool and do some aqua exercise against the water.    I had adjusted my diet to concentrate on low dairy/carbs/sugar/salt while eating as much anti inflammatory foods as possibe, but now have introduced a bit more dairy, yogurts, cheese etc. I also take Omega 3, Tumeric, calcium, D3, K2 , Magnesium and now a bone builder called Caltrate which is specifically designed for osteo support.  When the dexa scan came back, and the rheumy said he wanted me on the Prolia as soon as possible I asked if I could just treat it naturally with supplements and diet but he looked me in the eyes and said "well it hasn''t worked for you so far has it"...point taken.    

Why did they bother with a TAB after 5 weeks of high dose pred? Bit pointless by any standard and a waste of resources IMHO...

Easy answer to your second question: GP knew the symptoms and the disease first hand and hit me instantly with 50mg pred in his surgery before I even had the first blood test. Instant relief, and he didn’t feel the need for a biopsy because he knew the results could be negative. However he also referred me straight away to a rheumatologist but here in Aus there is a 6 week waiting list. The rheumy even said he expected a negative result from the biopsy after so long on pred and he got it. My GP was as surprised as you when he found out I’d had the biopsy...there was really no point, which is why I don’t want to go back now and have the rheumy suggest another one because I have this pain in my temple. That scar was nasty! ( but I don’t want to go blind either or have a stroke or heart attack...) 😩

Well he can't look at the TAB from that side - isn't an artery there! If Aus can't sort out their system and do TABs when they make sense they shouldn't do them at all. That is what most surgeons do in the UK, Perhaps they thought they use you for practice. Glad your GP is a bit more clued up than the rheumy!!

Thanks Eileen, so maybe I could try 20 mg for a few days then back to 8mg? I did do that a few months ago for a tooth extraction ...went from 11 up to 35 for two days on drs advice to avoid adrenal shock I was told at the time. I wasn’t on Prolia then though. Hope it doesn’t stir thing so up too much. 

Low dairy...I read somewhere that diary adds to inflammation, avoid lactose, go gluten free...try almond milk,etc. Didn’t know at the time I had osteoporosis or I would have have had a rethink on that. I had been taking Calcium, Omega 3, Vit D, K2...thought I had it covered.  Both my drs now regret not doing that dexa last May, but I didn’t have any osteo symptoms and still don’t, and I have never broken a bone. They only did it because I sprained an ankle and it was  taking too long to heal. (On pred). Although non symptomatic, I have all the hallmarks of a true osteo candidate, and then some..I was just too active and energetic to consider that I many have weak bones. 

He practiced all right. I thought it was just a punch biopsy...nope...but it did heal well I have to say. I read somewhere recently that a CT scan could detect GCA...first I’d heard that. What’s your thoughts on that?

No - not CT, especially not for cranial GCA. A PET-MRI or PET-CT will identify large vessel vasculitis in the chest/abdomen, neck (Positron Emission Tomography) but is a very expensive and not yet widely available imaging option using radioactive glucose tracer (I think). The brain takes up a lot so the emission from the brain swamps anything locally. There is an ultrasound technique that works as well as and maybe more reliably than TAB (TABUL study) but CT is a massive radiation load for not a lot of result. 

Actually, this paper

http://ard.bmj.com/content/early/2018/01/19/annrheumdis-2017-212649

discusses it at expert level - and the section after Table 2 and Recommendations 2 to 6 does explain it well if you can understand it. It isn't too bad I don't think if you read a line or 2 at a time.

Of course - there is no real link saying low bone density means an inevitable fracture. Maybe such bones are actually more flexible/resistant - not sure there have been studies on that. The rate of NOFs (neck of femur breaks) was falling anyway - there are a LOT of other factors such as maintaining fitness otherwise (balance, hydration, vit D level) and the other things like not wearing sloppy slippers, heeled shoes, good lighting, removal of trip hazards, checking medication for BP and so on which are equally as important

Well, that's the problem with osteoporosis: it has no symptoms until you break something out of the blue!  I didn't expect to be diagnosed with bone thinning, either.  Not athletic, but always active, walked, worked in a library lugging books around, trained for a short fundraising run without too much trouble, you know, not sedentary.  But I also lost weight over the years, especially in the few years leading up to PMR diagnosis.  Oddly enough no one suggested DXA scan when I broke my leg a few months before developing PMR symptoms, although I was already well within the age range they suggest we get a baseline DXA scan here.  And subsequently when I attended an osteoporosis program at our local hospital, every single attendee was slim, except one woman who was there only because her mother had had OP and she wanted to have information so she could protect her bones.

Thought:  the weight gain some people have when starting pred helps to counteract the bone thinning effects pred can cause!

A couple of winters ago a friend of mine broke her ankle (yes, another skinny person) and was embarrassed to say it was not ice related as these injuries usually are at that time a year, but a result of her tripping over something on her floor.  My m-i-l tripped over a stool or something and broke her arm.  She was given a shot of something to "help the bone heal" which I have since wondered if it actually contributed to her dying of a major stroke a couple of months later.  Could it have been an OP drug, and could the stroke have been a side effect?  We'll never know.  

That’s a scary thought...🤭

That’s an interesting point. Although I haven’t had a break, I am a clutz, and have had ridiculous falls and stumbles down steps, or onto concrete and hard surfaces. I just tend to bounce, or roll with the punches, so to speak. The only two major sprains I’ve had were to both ankles, one was from putting my foot on the floor getting out of bed and the other was tripping over a small retaining  wall while trimming roses. No breaks, just major ligament damage. I’m so very careful and wary now though....and it’s hard when you feel fine, look fine, but know you could  crack if you cough. 

" but know you could  crack if you cough."

Dis someone say that?  That really is a bit OTT and unlikely to happen. Especially with a history like yours!!!!!

 

Thank you once again for such a detailed response. I did understand that paper, albeit I did read it twice, as I always find the second time much clearer, and it certainly made a lot of sense. I can see that perhaps the ultrasound may be the way to go.  I do have a few other little niggles other than the pain in the temples, ( tingling fingers,  sore jaw and neck, hot and cold fevers); again could be the “flu like symptoms” I was warned about with the Prolia or the resurgence of the PMR/GCA. I’ll take your advice and up the pred today to 20mg for the next week and see what happens. I remember when initially diagnosed the GP started me on 50mg for 3 days, then said go off it, if the symptoms return it’s PMR/GCA, if they don’t no harm done, and we’ll look at something else. They came back with a vengeance. 

Yes, my rheumy drove his point home with that comment....and a few other statistics about my risk factors.  I was putting up my best arguments for NOT taking Prolia, and he could see I just wasn’t getting it. My GP whom I trust implicitly was on his side as well, but I still argued. After all, how could this be, ( -4 ) ...the whole scenario from dexa to result to appointment to discuss this new development and what it meant happened within days and I hardly had a chance to comprehend it. By the time the rheumy got to me I had researched it and had all my questions and arguments ready...boom. He kept his best for last. 

I was also advised to stop yoga...no twisting or bending allowed. Only resistance excercise.    Which includes daily skipping, star jumps, running on the spot.....sure, right, did I mention I have PMR??? 🤦???

I have to say I'm astonished you can't do yoga, yet you are encouraged to  --- skip, do jumping jacks, run on the spot?????  I hope you'll go for nice calm walks, maybe carrying a little extra weight.  I do exercises provided by a physiotherapist which are supposed to strengthen the muscles which support the spine.  They do not involve jumping or twisting, rather lying on the floor and moving the legs in certain ways as the exercises.

I'd like to know what kind of specialist told you to stop yoga, rather than finding ways to do yoga safely, as yoga is one of the activities which has been shown to help maintain bone density and even reverse osteoporosis. 

Hum - at 50mg a LOT of things would respond - and, actually, GCA might not respond in just 3 days. PMR is very characteristic in responding to 15-20mg in under a week - though, again, not everyone does - but once you stray above 30mg the water is well muddied!

I have to say - Christian Dejaco does put out medical stuff in a very clear and comprehensible way that makes it possible to get the hang of for most people who can read complex stuff in non-scientific language.

Ah well - at least he does have your best interests at heart, even if he exaggerated a bit!!!!

The whole journey for me has been one contradiction after another. With PMR/GCA it’s all about lactose/gluten free, low sugar, carbs salt, anti inflammatory foods and supplements, excercise to build muscle/strength etc. With osteoporosis it’s take calcium, and the dr said cheese, yogurt, milk...which I’d gone off last year, ...and low impact and resistance excercise only. The issue with the yoga is the bending and twisting, I can do any of the other poses that don’t include that. Because I’ve done yoga in the past I am quite flexible, so as long as I remember to not touch my toes, twist in knots, and just bring it back a notch  etc, I can do the more simple ones...but I tend to forget that because I can actually do the ones I shouldn’t. It was the physio who gave me that advice, but she did give me sets of resistance band exercises to strengthen muscle and bone. And told me to skip, run on the spot, star jumps, ...but that’s not that easy with PMR. Sometimes I can, sometimes I can’t. I just do what I can when I can if I can. It’s just hard when you get to a point where you feel like you are getting on top,of the PMR, only to remember that you can’t do some things you feel like doing because you are at high risk of fractures so you have to be careful. 🤦???

Again you’re correct. The PMR pain and symptoms responded within about 6 hours ( and returned after the 3 days) but some of the GCA ones lingered, like the droopy eye, the blurred vision. Headache, tender scalp, disappeared though. 

I know of NOTHING that says lactose/gluten-free helps with PMR/GCA. Which would help the diet mix a lot!!!! Low carb (automatically low sugar), low salt and focussing on anti-inflammatory foods is easy enough - but actually, the so-called nightshade contributionto inflammation is disputed. There are a lot of people, me included for whom they make no difference other making our diets a lot more colourful and varied.

Sorry, should have explained that my naturopath was treating me for slight malabsorption and “gut” problems and suggested gluten and lactose or diary free.  Also have no gall bladder and a fatty liver and I’ve always been so tiny, with not much of an appetite then I lost 9 kls  quite rapidly. I was down to 40 kls. Couldn’t eat, couldn’t sleep, constantly tired, the bathroom was my go-to place. Drs thought it was anxiety although the only thing I was anxious about was being sick! Then the pain of PMR hit and the roller coaster began. 

Hmmm - well I shan't express my opinion of naturopaths. I prefer a bit of evidence-based medicine myself - even if it isn't perfect.

There are very accurate ways of identifying needs for gluten and lactose-free - and it isn't always gluten that is the problem. For me it is wheat starch - and yes, I know it is the starch, other gluten-containing cereals don't cause a problem, gluten-free wheat starch does it. Lactose-free isn't a problem, especially where I live, loads of lactose-free dairy. But when you remove so many food groups at the same time you are bound to end up with different problems. Though I venture to suggest your naturopath's bank balance has done quite well?

Oh yes, he doesn’t miss you coming through the door with his outstretched hand! I first went to him on a friends recommendation for the use of Mora Therapy. He doubles as a chiropractor, naturopath, has a yoga and Pilates studio and specialises in Mora. At that point I was desperate to try anything as nothing was helping and the dr wanted me on antidepressants to control my random symptoms. Never been on them in my life. That was pre- PMR diagnosis and I haven’t been game to stop taking his “potions”. 

Would this provide a bit of encouragement?

https://www.naturowatch.org/legal/fenn.html

https://respectfulinsolence.com/2014/11/14/your-friday-dose-of-woo-naturopathy-and-bioresonance/

Though it is said to aid smoking cessation...

Oh POOP! Bloody hell....what a nimnut I am. I was so desperate to fight this damn PMR/GCA I tried everything. I’d never heard of MORA before this friend mentioned she’d been going for years and she thought it wonderful. For me, because I tried everything all at once, (  along with  pred), I have no idea what worked and what didn’t, I just know I managed to go from 50 mg to 8 in 9 months.  On saying that, I’m slowing it right down now, and also starting to eliminate some of the more alternative things to try to stick to more natural ways along with the pred and the Prolia. This will now be another thing scratched off.   Won’t be going back. Thank you for showing me the light.  X

PS: I know you don’t like the osteo meds, maybe that will be my next omission. If my mum could live till 99 with severe osteo, no meds, and the only break she ever had was her hip at 95 from tripping over her friends walker in the hostel, there might be hope for me yet. 

You'll have a major fight over that with your doctor who thinks you will crumble if you sneeze. I'd probably agree to try them, for absolutely not more than 2 years. Which seems to be not too bad a risk of the long term problems they come with. But if you need any dentistry done - get it done BEFORE you start on anything and do make sure your dental hygience while on them is PERFECT.

Funny you should say that. Amongst all the shock of the osteo diagnosis, ( mind you I’m not sure I was over the shock of the PMR/GCA one at that  point either) I was advised to check the dental work and was explained why. When I’d started pred 6 months earlier I had a checkup, first one in a long time and only needed a filling, so was pretty confident. Surprisingly now there was a small amount of decay at the base of a back tooth, could fill it, might need root canal in the future, but best take it out now because it may not last for 5 years  anyway ( 3 on Prolia  but stays in the system for 5 I was told]. Came out easily enough but bled for 7 hours, 😷 then on hols in NZ in January I broke a tooth...eating a marshmallow. Back home and I now needed a crown. Because it was mid December when diagnosed, then Xmas followed by tooth extraction I begged to delay the Prolia till I returned from hols early Feb in case of side effects and he reluctantly agreed. 

Which leads me to another question on my original posted question above. 

As you suggested I increased the pred 2 days ago from 8 to 20 to see if that tender spot on the temple and achy jaw was a return of GCA. It’s made no difference, it’s still there, and so are the other aches and pains that seem to,have returned, very minor though compared to the original PMR pain, so I’m suspicious these are Prolia side effects and won’t be affected by the pred. However....

Given I had the tooth extraction, crown,  then the Prolia 2 days later, could the temple issue be a result of the new crown perhaps being a bit out of alignment and putting my bite out of whack, affecting where the jaw “hinges” at the temple? The tooth doesn’t feel exactly the same as before, it’s not painful just ...different. She did say to come back if I felt it wasn’t sitting right but until 2 weeks ago when the temple issue started then a few other niggles, I was prepared to give it time to get used to it. Given the pred hasn’t made a difference I’m thinking it may either be the uneven crown or jaw pain from Prolia, but Is the temple too high up to be a dental problem?

I know you’re not a dentist but you are very knowledgeable. I’m looking at any alternative to  worst case scenario of GCA return and further problems with that, before I see the rheumy at my next visit in 3 weeks time. 

 

Personally I'd think something like a tooth shouldn't need more than a few hours or a day to get used to.  It's not like new shoes which will gradually conform to your foot.  Best see your dentist asap to have the alignment checked.  

Hope you fell better soon.

feel.    oh for an edit button

Had a good chuckle at your typo....wished I’d “fell” better swandiving over the roses......

No, it is probably slightly too high and your bite is being compromised - and boy can that cause discomfort as it affects the muscles all the way up. If it is too high at the beginning it won't bed in, you get used to the other different feel quite quickly. Back to the dentist - who I suspect thought there might be a problem!!!

Thanks Eileen and Anhaga. Have made a dental appointment for Monday. Hope that’s all it is...I can handle the slight going backwards as far as return  of aches and pains goes, just not this temple pressure. Not with GCA. I just thought it may too high up for the crown issue. Appreciate your time ladies. X