GCA, exercise and bones

[Toolie2]

Can strenuous exercise provoke GCA? I've been cautious about bending down much since I lost most of the sight in my left eye, but I need to increase my exercise to prevent my bones getting worse.

After a DEXA scan a few weeks ago which said I had osteopenia, I was sent a prescription for a daily dose of 5mg risedronate sodium. I've read many of your responses about osteoporosis and increasing bone density, including HeronNS's story and I'm more inclined to follow her example than to take these tablets.

My GCA dates from July last year. In March I had a sudden malaise that made me weak, no pains, just debilitating fatigue. In April I had a slight ache in my jaw when I opened my mouth wide, and then slightly tender patches on my head which lasted for about a week. By early July I was feeling quite a lot better and I spent three days slowly cleaning our little balcony, doing a lot of bending, lifting heavy plant pots, getting on hands and knees and up again. I'd just about finished when I noticed misty blobs in my eye. Next day, I went to Moorfields A&E and they diagnosed GCA.

Maybe it was coincidence, but the circumstances of my loss of sight have made me wary of bending down much! Or have I just created my own superstition?

Incidentally, I thought this note at the end of Wikipedia's entry on Osteopenia was interesting.

In June 1992, the World Health Organization defined osteopenia.[48][34] An osteoporosis epidemiologist at the Mayo Clinic who participated in setting the criterion in 1992 said "It was just meant to indicate the emergence of a problem", and noted that "It didn't have any particular diagnostic or therapeutic significance. It was just meant to show a huge group who looked like they might be at risk."

[SnazzyD]

My take on the bending down is that was merely an occasion when your oxygen level dipped and your already oxygen starved ocular nerve couldn’t function with the extra deficit. For example when we bend, sometimes we hold our breath more or our ability to fully expand our chest is impaired because we are hunched over. I say this because in my early days of looming GCA is got the grey bits when I was exercising really hard at the gym, cycling up a steep bit or bending over and making some physical effort with something. The inflamed and therefore narrowed arteries can’t carry as much blood/oxygen to an area so any less flow and you are in trouble. So I think it is a symptom rather than a cause.

[Toolie2 in reply to SnazzyD]

Thank you, that’s interesting and does make a lot of sense. I think I’ll make sure I include breathing exercises between anything strenuous.

[SnazzyD in reply to Toolie2]

If your inflammation is adequately controlled it shouldn’t matter. If the bending is causing the issue, it’s a warning that all isn’t quite right. You’re not going to cause the GCA by bending.

[Toolie2 in reply to SnazzyD]

Thanks SnazzyD, I’ve been pretty stable since I got the hang of adjusting the tapering according to my head so I agree, I shouldn’t worry. Hmmm…

But thank you.

[Bluey-1 in reply to SnazzyD]

Very interesting and makes sense. The day we dashed to Eye Casualty June 22, after having bloods done at the surgery (had been fatigued, headaches, jaw ache for two weeks) I was dozing in the garden and my head lolled to one side for some time. When I looked up my vision was altered. I saw a square of the garden surrounded by black, as if the garden was framed. I then had blurring followed by normal vision. Mad dash to Eye Casualty, twenty minutes away. As I was explaining to the receptionist what had happened, I had vertical lines on one eye, then it cleared. I was frightened but didn’t fully realise the seriousness of it. Was dealt with immediately, lots of tests and treated with 60mg pred prior to official diagnosis and further ultra sound /MRI/ECG and bloods. Diagnosed for GCA and treated quickly. No further vision symptoms and severe headaches receded within a few days. I was paranoid about my eyes for a while. The registrar made it clear I was to return to eye casualty immediately if I had any unusual visual symptoms. Lucky. Even writing this down takes me back to that day when everything changed.

I hope all goes well for you Toolie. Breathing exercises have been essential in calming stressful moments during this year when GCA took over. Good luck

[PMRpro Ambassador in reply to Bluey-1]

A common time for sight loss is in the morning or after a nap later in the day. Like you experienced ...

[Bluey-1 in reply to PMRpro]

It was very scary. Hadn’t a clue what the hell was happening. I felt lucky afterwards that I’d been treated so quickly. That eye doctor was incredible. I rang Eye Casualty accidentally a week later while trying to get through to Rheumatology. He took 15 minutes out of a busy casualty department to talk me through GCA and what to do if certain symptoms increased. He said he was pleased I’d rung. I actually felt myself welling up…on high pred I was pretty emotionally labile.

[Toolie2 in reply to Bluey-1]

Hi Bluey-1, glad you had such a good outcome. Interesting about your square black frame. When my eye was at its worst, what I could see was framed by a pointed oval of vivid red and green. The central portion of my sight was saved with a thin wedge to the left, but it tends to confuse the other eye.

Thanks for your good wishes. Hope you make good progress.

[Bluey-1 in reply to Toolie2]

How strange. It seems that visual disturbances are quite individual. It’s useful to share experiences as GCA is a weird illness to try to fathom out. I’ve never suffered from headaches or migraines so I was confused and shocked by what was happening. Since 29/6/22 I have tapered to 6mg daily with one mini flare last September. Slowly does it with massive changes to my daily life, as advised on here. I still get days of severe fatigue, sometimes with no cause, other times as a result of stress when I’ve got myself into a stew about nothing or done too much the previous days. You do get to read your body better as time goes on and in my case, ‘don’t panic Mr Mainwaring’! (ref to British 1970s sit com from non UK readers).

Good luck Toolie

[Toolie2 in reply to Bluey-1]

Hi, it is very interesting to compare notes. I suppose the visual disturbances depend on which bits of the retina are being affected. Your lines and angles seem strange, though. I used to have awful headaches until my second child was born, and nothing much ever since. Didn't even have much of a headache with this disease. I've tapered down to 5mg. and stayed there since February. I've got energy now, and got my strength back. In fact I sometimes wonder if I've really got it! Except I can't see with one eye.

[Hidden]

Hi Toolie2!I can't comment on gca and bending down: I don't know hardly anything about it but I am sorry you are suffering again with it.

I found your quote from the Mayo person very interesting. Thank you for sharing it.

I hope you feel very much better soon 💐

x

[Toolie2 in reply to Hidden]

Hi would love to run, thank you for your good wishes. Actually, I’m pretty well right now, but don’t want to make things worse. Yes, I wondered if the pharmaceutical companies had seized on the new condition of osteopenia.

Hope you get your wish soon

[PMRpro Ambassador in reply to Toolie2]

You aren't the first to think that ...

npr.org/2009/12/21/12160981...

[Toolie2 in reply to PMRpro]

Spot on! How do you do it?

[PMRpro Ambassador in reply to Toolie2]

It's been quoted before in similar discussions. How do I do it - lots of practice and a memory like an elephant ...

[Hidden in reply to PMRpro]

Just read this. Wow! Thank you!

[DorsetLady PMRGCAuk volunteer]

Maybe it was coincidence, but the circumstances of my loss of sight have made me wary of bending down much! Or have I just created my own superstition?

I think you have created your own superstition - my eye was affected one evening [after a long period of undiagnosed issues].

That day husband and I had been out for coffee as usual and as it was very windy, I assumed when it started to get blurry I had got a bit of grit in it, and continued to think that following day

Unfortunately it wasn’t that, but the optic nerve being starved of oxygen due to the ophthalmic artery being affected by GCA. A couple of days later, I woke up with no sight in that eye - went to A&E - and diagnosed within a matter of half an hour…. and started 80mg Pred too late to save that eye, but enough to save other.

Certainly no bending involved.

As for osteopenia - doesn’t mean it’s going to progress to osteoporosis - but too many doctors think it does. ..and of course taking steroids may increase the risk for some.

[Toolie2 in reply to DorsetLady]

Thank you DorsetLady, I know you were misdiagnosed for a long time. It is alarming that what seems like a little thing, maybe a bit of grit for you, an irritating contact lens for me, so quickly turns out to be so devastating.

Yeah, I think you're right about my superstition, but for me, bending stands alongside crossed knives and shoes on the table! Also I'm still paranoid about the other eye, so I shall exercise with caution and only bend from the knees.

Looking at the incidence of broken hips among all the old people I have ever known (so far I can only think of 2), I don't think the risk is worth giving up my first-thing cup of tea for a tablet and a glass of tap water. At the moment, anyway.

[DorsetLady PMRGCAuk volunteer in reply to Toolie2]

Hi ,

It’s quite normal to be worried about the other eye especially early days…but once you’re on correct dose of Pred you do need to be mindful [you know what to look for], but not paranoid.

If you haven’t read this - most of it will probably resonate -

healthunlocked.com/pmrgcauk...

Agree on the knives and shoes on table 😊. But I don’t worry about bending, do Pilates, and plenty of gardening.

I did take Alendronic Acid for 4 years as thought susceptible [early hysterectomy aged 37, mother broke hip etc] with no issues whatsoever, and last DEXA scan done after I’d finished Pred did recommend I continue to take VitD/Calcium supplement-so I do.

[PMRpro Ambassador in reply to Toolie2]

It IS only once a week ...

[Toolie2 in reply to PMRpro]

Alendronic acid has been, but this new prescription is every day. I think the weighted vest wins.

[PMRpro Ambassador in reply to Toolie2]

Know what I'd say to that!!! There is no need for that, risendronate also comes as a weekly tablet.

theros.org.uk/information-a...

There are also monthly versions I think and, even better, annual infusions. Compliance should be at the top of their concerns and offering a daily tablet where you have to stay upright and not even have a cup of tea in bed would so upset me I would refuse to take it. I can't function properly until then!! It is one thing when the only available drug for something is inconvenient but that isn't the case here!

[Toolie2 in reply to PMRpro]

Exactly. I'm sure you already have this at your fingertips, but I think it is a good graphic illustration. nice.org.uk/guidance/ta464/...

[Bluey-1 in reply to Toolie2]

What! I tried AA some years ago after a wrist fracture, once weekly. Didn’t suit my stomach. Felt quite peculiar so stopped. Fast forward 5 years (humerus fracture) and osteoporosis diagnosed had annual infusion a few months before hit with GCA so no extra meds for me on top of pred other than Adcal.

[PMRpro Ambassador]

Osteopenia is a fairly meaningless diagnosis - it is just a term means reduced bone density compared with the maximum and ranges all the way from almost normal to almost osteoporosis. Virtually all of us on the forum are likely to be told we have osteopenia, maximum bone density is usually at age 30 and then it starts to fall in most people. You need to know your t-scores - z-scores are pointless, it just compares you to your peers!

On the basis of your t-scores, you would be able to make a more informed decision. If you are already -2.4 then you are close to oseoporosis and maybe it is worth at least a short course of a bisphosphonate, if it is -1,6 or therabouts you have a long way to go and if it is -1,3 as mine was 14 years ago you are barely off normal. And after over 11 years of pred, my scores were still all better than -1,6. I took a few tablets right at the start before discussing my research with a different GP and he agreed it made more sense to wait for the dexascan result. So I did and have never taken any more.

[Toolie2 in reply to PMRpro]

Hi PMRpro, Thank you for this, it's really useful to know. I think your advice would probably be to take a course of bisphosphonate because my NOF T-score is -2.4, so on the verge of osteoporosis. Spine and Total Hip are -1.2 and -1.9 respectively. I'm out of the country for a few weeks so I've plenty of time to think about it before I can pick up the prescription. I'm interested in how the risk is assessed given that many, many old people never do break their hips. Also I read that taking these drugs does not protect you from breaking other bones, like arm or wrist; which I can't understand, unless it meant studies have not been done for other fractures.

[PMRpro Ambassador in reply to Toolie2]

They do reduce the risk of fracture in general - but that said, most people who break a bone have normal bone density!!! You might find this interesting:

ncbi.nlm.nih.gov/books/NBK5....

Most of us probably have several risk factors - age, being on pred, female, low bone density if it applies, possibly PMR may be similar to RA without any of the others they list.

This

ncbi.nlm.nih.gov/pmc/articl....

found that we do have an increased risk - but it isn't clear if that is the disease or the treatment!

[DorsetLady PMRGCAuk volunteer in reply to Toolie2]

This link might help - it was in another post on similar subject and attached by  SnazzyD and tells how your risk is calculated….

frax.shef.ac.uk/FRAX/tool.a....

It might also be worth looking at te ROS site for more info before you make your decision.

theros.org.uk

[Missus835 in reply to PMRpro]

My wonderful - not - rheumy prescribed AA for what I now know is osteopoenia, she didn't tell me that after my dexascan, just that my bone density was less. Took it once and still have it in my ever growing box of pills. It was the timing and sitting for at least a 1/2 hour that put the kibosh on it for me.

[Toolie2]

Dear DorsetLady and PMRpro, many thanks to both. I shall follow all the links you have provided and reflect!

[Stella3]

I am 78 years and I’m amazed at your early symptoms of GCA. Mine were constant splitting headache and double vision. So I couldn’t exercise at all. My GCA was diagnosed by a friend who is a GP but confirmed after biopsies in my temples at the hospital. I was immediately put on 60 mg prednisone and given an infusion of Reclast I already had osteoporosis and steroids affect your bones. I had GCA for four years and had four infusions of Reclast (one every year). When I was able to exercise I did not notice it affecting my eyesight in any way. I did not choose to take Reclast but was persuaded by my rheumatologist whom I felt knew better than me. I haven’t had any more Reclast for a couple of years. My DEXA scan shows that I still have osteoporosis but it has stayed the same. Good luck with your eyesight, I know it is a frightening thing

[Toolie2 in reply to Stella3]

Hi Stella3. I agree my symptoms were nothing compared with awful pain that other people describe. I had a biopsy and all the 'ologists involved were in agreement, but I kind of feel a bit guilty that I have been so pain free. Mind you, I worry that I might not notice if it flares again and goes for the other eye! I have passed the first anniversary now and feel strong and energetic again so I think I shall exercise instead of taking more medication. Skipping should do it, I would think..