Return of GCA?
Posted , 6 users are following.
Hi to all. Sorry if this is long winded,
I was diagnosed with PMR/GCA last May and commenced on 50mg pred, a biopsy 6 weeks later returned a negative result, but sed and CRP were very high initially (I had eleventy seven symptoms of both conditions,) so thankfully my drs didn’t take chances. All has been going well with tapering, have been using the DSNS method since 11mg, now down to 8mg. Have had the odd pred side effect like all of us, some worse than others, but have managed to motor along quite well considering. One recent setback was being diagnosed with severe osteoporosis with a T score of -4 and had my first Prolia injection 8th February. For the first few weeks I had no side effects that I was aware of.
I’m a little apprehensive about asking, but could GCA be returning on this low a dose of pred (8mg), or is what I’m now experiencing more likely to be Prolia side effects?
I have developed a mild to moderate permananent tenderness in my left temple, at the biopsy site, if I massage it I can actually make it worse, and a very slight discomfort in my right. When I raise my eyebrows it also hurts on the temple site, - where I had the biopsy is worse than the other side. It doesn’t go away, although I wouldn’t call it a headache as such, certainly not like the original GCA headache- more like a very tender , sore temple. I don’t have scalp pain this time,only temple pain, I do have a tender jaw, and also have a return of the aches and pains, tiredness, muscle pain and sore shoulders/hips. My eyesight has been getting worse since the beginning anyway, always blurry, despite new glasses, My appetite is waning again, occasional hot flushes that pass, and at times my head feels like it is rolling into oblivion when I lay down...but that’s only now and then. I’m aware that with Prolia, you can develop more aches and pains and soreness and tiredness etc...so I’m not sure whether what I’m now experiencing is Prolia side effects,( so,just get used to it girl), reducing too low on pred to control my symtpms( although my recent blood test was perfect); adrenal function trying to kick in; or something else? The side effects from Prolia, if you get them, are very similar to the symptoms of PMR, though it is this temple pain that concerns me, the rest I can deal with. Even though it doesn’t stop me yet, it is not pleasent and I fear the only way to tell if is GCA is to,increase the pred to see if it goes away.
If that is the case, and given I’m on 8mg now, what dosage should I increase to, for how long, and then how quickly should I reduce again? I’ve read that one can increase quite considerable for no longer than two weeks, then drop back to the dose you were on...is that right? (I did go from 11mg to 35mg for two days, then back to 11mg to cover a tooth extraction just prior to Prolia without any issues).
I’d rather ask here first and get everyone’s valued opinion before I contact my rheumy again, as I’ve found that he can be a bit “text book”. On saying that he is also very open to me going in pre-armed with info and suggestions and then he guides me. Being in Australia, he had never heard of the DSNS method but was happy for me to reduce whichever way I liked, and has been more than happy with my progress to date. My next appointment with him is in 4 weeks, but not sure I should wait that long with this temple pain, in case it is GCA returning.
0 likes, 36 replies
Anhaga Reeceregan
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I'm no expert and I think you should try to check with your doctor as soon as possible. However it seems that headache is one of the more common side effects of denosumab (Prolia). But you don't describe this as a normal headache so definitely worth looking into. You should not increase your pred dose significantly without medical advice, although I'm sure some people knowledgeable about GCA will be along to give you some guidance.
What else are you doing to help your bones?
Reeceregan Anhaga
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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.
EileenH Reeceregan
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It could be - there was a post on one of the forums in the last couple of days from someone who had asked a very similar question to you a month or so ago. She had got down to 2mg (PMR starting dose) after about 16 months and suddenly she had GCA symptoms. The doctors agreed and she is now on a GCA dose.
It is still less than a year since you were diagnosed - and relapses are not uncommon in the first year to 18 months after diagnosis. You are perfectly OK to try taking practically any higher dose for a few days and see if it helps if you want evidence - 20mg (or even more) for 5-7 days can be done and you go back to your baselines dose. It is done a lot in chest infections these days.
Out of interest - why did you go for low dairy? And what a shame they didn't do the dexascan last May - they could have got the achy bits out of the way while you still felt rubbish! If you are slim that is a risk factor - us fatties have inbuilt protection and don't have to buy ourselves weighted vests
EileenH
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Reeceregan EileenH
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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...) 😩
EileenH Reeceregan
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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!!
Reeceregan EileenH
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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.
Reeceregan EileenH
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EileenH Reeceregan
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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.
EileenH Reeceregan
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Anhaga Reeceregan
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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!
Anhaga EileenH
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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.
Reeceregan Anhaga
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That’s a scary thought...🤭
Reeceregan EileenH
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EileenH Reeceregan
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" 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!!!!!
Reeceregan EileenH
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Reeceregan EileenH
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Reeceregan
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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??? 🤦???
Anhaga Reeceregan
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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.
EileenH Reeceregan
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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!!!!
Reeceregan Anhaga
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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. 🤦???
Reeceregan EileenH
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EileenH Reeceregan
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Reeceregan EileenH
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EileenH Reeceregan
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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?
Reeceregan EileenH
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EileenH Reeceregan
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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...
Reeceregan EileenH
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Reeceregan
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EileenH Reeceregan
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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.
Reeceregan EileenH
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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.
Anhaga Reeceregan
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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.
Anhaga
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Reeceregan Anhaga
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EileenH Reeceregan
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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!!!
Reeceregan EileenH
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