Hi. I have always valued all the contributions on this site since I was diagnosed with PMR and GCA in October 2021; this is my first post.
Last December I had a PET scan as my ESR and CRP had rocketed ( ESR 102 and ESR 72) and I was definitely in flare mode with increased stiffness and pain.
I was put on 40 mg. Prednisolone having been on 1 mg. and saw the consultant today (now down to 15 mg). Plan now is to be on Tocilizumab injections asap with further reduction of steroids.
My question is regarding exercise. I forgot to ask the consultant when she showed me the results of PET Scan ( Dec.) with evident inflammation of the aorta. Inflammation down now CRP 10 and ESR 27!
Should I be pushing myself with weekly 5 k Park Runs which I have been doing since steroids were increased in addition to 2 walking football sessions and 1 rowing session a week? I am 68 and love exercise.
I must add that I am a very slow runner, but always feel a bit dizzy at the end.
I probably couldn't have said all this to my consultant today, plus it hadn't crossed my mind at the time. Guess I'm a bit scared re. aorta as consultant said that continued inflammation could cause damage leading to aneurysms; my father died of an abdominal aortic aneurysm so fears are not unfounded.
Thanks, in anticipation, for any responses.
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Magsters123
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Hi and welcome now you have come out of the shadows.
If you are maanging that exercise programme without problems then fair enough - but you say you are pushing yourself which suggests to me you sometimes find it too much? If so, maybe listen to your body a bit more.
You should be monitored now for the signs of an aneurysm developing so ask about that if nothing is mentioned in the future.
Thanks PMRpro. Always surprised how difficult it is (for me?) seeing a consultant as even though I take along prompts for questions I inevitably have difficulty absorbing all the information and asking additional questions.I won't dwell on it, but listen to my body more and adjust as required ...... I'll have more questions next time with consultant!!!!
Hi you could ask to record the appointment, it is allowed and you can listen back to it as many times as you like. My daughter has done this on her phone. I have passed my notes/questions to the doctor before and he has gone through them with me. Hope this helps for next time
I’d say listen to your body but not the Pred. Your body has a heck of a job to do while the Pred is propping it up so if it says that was too much, rein it back in. This is no time to push any limits.
Ty Hanks SnazzyD. I do think that my over zealous exercising has been more about being in denial of this strange condition. I will rein it in a bit!!!!
I have to agree with SnazzyD, this has been for me a humble journey to learn to listen to my body--- during my first flare up--- I kept on waiting and minimizing my stiffness and pain--- and every week I did this my inflamation kept on going up!!--- This time around at 2 1/2 ml prednisone---I felt so "healthy" and I walked way too many kilometers--- until saldly the pain and stiffness started to show up--- this pain did not relent--- this time I was able to listen to my body way sooner so my amount of inflamation was contained and with the help of this group and my PC doctor was able to increase my pred.--- I am feeling much better but my "overdo" has temporarily interrupted to tapering--- and I accept it as a message from my body--- I wish you MaidMarrion66 continued recovery and a balance between rest and exercise--- which I am still striving to achieve!
if you have an inflamed aorta or any other cardiac condition any stress to your heart or blood vessels should be preceded by medical consultation and advice.
I am really surprised this information didn’t come as standard when sending someone off after diagnosis. However, even a search for exercise with an aortic aneurysm didn’t come up with much in the way of specific advice and varied a fair bit. What also amazes me is why nobody with GCA, in the UK at least, gets any kind of aorta surveillance. I did ask about some sort of aorta check and was told they didn’t do it routinely unless there are symptoms.
Hello Snazy, you are spot on right. That is, unfortunately, the nature of most health systems around the world, including for those covered by private insurance: unless you have an incident or symptoms indicating an incident is imminent no tests are done. By the time they test you it’s too late! Plaque buildup in the arteries (that leads to strokes, heart attacks etc) is one of the top killers in the UK. It’s a silent monster that can only be detected with an mri scan of your arteries. It’s an expensive test but if done in you forty’s or early fifty’s can save millions of lives from premature death (and millions cost saving of remedial health costs). Much has evolved in preemptive screening of cancers and other mass killers but the heart is still waiting for some affordable procedure that can be mass rolled out…
What also amazes me is why nobody with GCA, in the UK at least, gets any kind of aorta surveillance. I did ask about some sort of aorta check and was told they didn’t do it routinely unless there are symptoms
Despite the fact it states in guidelines it should be.
Depends on your rheumy - Mavis was monitored regularly at Gateshead. There are others who do chest x-rays every so often which is the basic level of monitoring that was mentioned in the past.
I have GCA and PMR managed currently by methotrexate only due to allergy to steriods. I also have epilepsy. I am 2 years on with the condition. I am currently ballroom and Latin dancing about 10 hours a week .....for me the answer to the various unpleasantness is to dance as much as I can when I can and forget my problems as much as I can while I can! .......Good luck to you
Hi WaltzG,Would you mind if I asked you about methotrexate.I also am 2 years on MTX for GCA but no pmr symptoms.My GCA is the LVV kind.I am currently on 15 mg of MTX and are awaiting the results of a PET scan.Doctor has said if there is improvement I can reduce my meds.I was on 20 mg to start with.Can I ask what your dose is and does your doctor have a plan to reduce your dose.
Hi again....I only know about methotrexate without steriods so my experience prob won't be helpful the group will know tho. I take 10 mg weekly in tablet form and expect to continue on it for a long while . ..
Thank you for the info.I should have made it clear that I do not take steroids either so was interested in your journey as it’s similar to mine.I have not seen the same rheumie twice so the latest one suggested I may have another 2 years to go.I asked the question of how they monitor my condition and was told the only way is via a PET scan which I have just had.I do believe it’s better for my body to be on the lowest dose to control my condition.As many have said on here,we are all different and respond differently.I do know this condition may be with me for life as there is no cure.I wish you well on your journey and hope all goes well.
Sorry you have had to go up from 1mg. It is such a disappointment - but onwards and downwards as we say.
If I were you I'd step back for a while from your tough exercise regime. I've no idea how you managed to do it while on 40 mg pred and on a fast taper to 15. 15 is a level I would think is good for getting into exercise again but you have had the downward sweep over 2 months. So perhaps go to walking or a more gentle approach to what you do (slow the rowing, less time?) for a month or so and then build up to restart.
Can't comment on heart issues (or impact of TCZ on exercise) but it sounds like you have a really body friendly regime once you are stable on the pred again.
Hi Boss302Fan, Another slow runner, that's great. Sometimes I am am jogging at the same speed as walkers. Anyway I am alarmed as have just looked back on my BPM statistics on my watch and see that I peak at 185 BPM every Saturday morning at the 5k Park Runs. I think this is definitely accounting for the faintness. I believe max BPM is 220 minus your age!!!I think I will stick to walking football and gentle rowing for now. Only learnt about GCA induced inflamed aorta yesterday, but PET Scan was December and increased Prednisolone should have done the trick ( CRP and ESR decreasing).
Also the target BPM range is between 64% & 76% of Max (220 - age) for moderate exercise or between 77% & 93% of Max for vigorous activity. I believe those estimates pertain to a person of good health and lower for someone with a chronic disease.
I've been working on exercise and tapering for over 4 months. For me, the secret is not pushing the walking or rowing but finding out what is just right. If I row too long, my arm will have PMR pain minutes later. Since I figured this all out, my gym time is enjoyable but not over-effortful. Taper continues to go slow and well. My body says thanks for letting me move.
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