Since getting RA in 1996 (male, 72) I’ve lost an awful lot of muscle (wastage), especially in my arms (biceps) and legs in the last few years. I’ve also started having some heart issues, medics think it’s muscle wastage of my heart or Cachexia.
Anyone know of any other possible medication treatments as well as the daily exercises regime I’m already doing to try and build my muscles back again please?
I was 16 stone when I had to retire on Ill health grounds in 2004, I believe 2 stone of that weight was ‘flab’. I now weigh just 11st 3lbs and and I’m unable to lift anything heavy, climbing stairs leaves me totally out of breath. Every day I walk our little Jack Russell with my wife around Sheffield’s Botanical Gardens for ³/₄ of an hour, albeit very slowly!
Dennis
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Leviset
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Rheumatoid cachexia is quite common sadly, and another reason why it is so important to try to get this disease under control, and why it is so important to do exercise. It is implicated in RA fatigue too. It’s the thing that motivates me when I really, really don’t want to do my daily routine!
So very sorry this has affected you, at 72 you should still be able to have an unrestricted life! Was the RA the reason you took early retirement? As that suggests that maybe you have an aggressive disease that was not properly controlled? Increasing your risk of getting this.
I’ve not heard of cachexia affecting heart muscle, more lean muscle in arms and legs. But since active rheumatoid arthritis can attack your heart I guess it comes to the same miserable result.
The only treatment I’ve read about is what you are doing - muscle strength and aerobic exercise. However what drugs are you on for your RA? There has been some recent research that suggests that patients on anti-tnf biologics can have a positive effect on cachexia as well. I don’t know at what stage this is, but might be something worth discussing with your rheumatologist.
Yes had to take redundancy and retirement on ill health grounds in 2004, aged 56.I lost both my ankle joints (one was fused the other a replacement ankle joint which has recently failed). Had further operation to break and realign my fused ankle as it had started to bend right over. I’ve been through all the MAB treatments and now on JAK.
Try to walk a little further on your walks. Also try lifting two bags of sugar to strengthen your arm muscles darling start light then go onto something a bit heavier.xxxx
Hi I too have muscle wastage suffer from fatigue, extreme breathlessness heavily reliant on equipment to keep me independent need to use a wheelchair due to only able to walk 10 yards, I have a neuromuscular disorder, not suggesting this is what’s going on with you. My Rheumatologist liaises with my respiratory/ neurological team as some medications used to treat rheumatoid arthritis affect the muscles..... I’m diagnosed with sero positive RA May 2020, so very early days for me, physiotherapist advised exercises / sending out bands so I can see how I fair, perhaps your rheumatologist can refer you to neurology.
I think it would be a good idea to see a physiotherapist either in the NHS or just pay someone for a few sessions to get yourself an exercise plan.You could always find a good pilates teacher - gentle Pilates would help your muscles no end.
Weights as Sylvi has suggested would be good, you can also use cans from your kitchen cupboard or you can buy little hand weights. I used them to build up strength when I broke my wrist - some of them I got very cheaply at the Foying Tiger shop then in lockdown when I needed slightly heavier I had to get them from Amazon - my heaviest is 2kg.
You might also find Nordic walking poles would help you, they give you a whole body work out as you walk and they also seem to spread your body weight better when you walk. You can probably find starter classes that would get you going properly.
Nordic walking and Pilates are not just for the super fit.
So sorry to hear that you are in this predicament. I can emphasize because I have lost some muscle all over since lock down. No Gym, no swimming. Even though I exercise daily it's still going. I just try to maintain what I have. It's easy for me to say, but just do as much as you can . A little, a few times a day is just as good as a long time in one go that wipes you out for the rest of the day. All the best.
I find that as I've got older I lose muscle condition and bulk very quickly whenever I'm limited in activity by illness (of any type). It takes longer each time to get back to a reasonable level and I've really been struggling with the lack of opportunities to get help with it since January last year. I've usually gone to the pool for regular aquafit which helps me, but that hasn't been available of course. I've now started some physio (having had the all clear on my heart) and am finding that is helping, but it's a long slog.
It's really worth pushing for some physio help and doing regular strengthening exercise yourself.
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