LUPUS UK
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Can anyone with SLE do intense exercise?

My son Fin, diagnosed and hospitalised in September with severe lupus nephritis is attempting to get to the fitness level he was at before he became ill. He was training in his bone 6days a week and racing national and internationally.

Is there any reason why he CAN'T get back to form?? He feels better every week and is planning on getting back to normal. He is being watched weekly by the renal team and is on reducing steroids. He is on mycophenolate and IV rituximab.

His haemoglobin will definitely affect his aerobic ability and it is creeping upbeat at 10g at the moment. But it could normalise eventually??

He is 18 and incredibly optimistic about his future. That's just the way he is!

I just wondered if anyone else has heard of people with SLE and lupus nephritis managing to do well at sport.

Thankyou x

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oldestnewest

Training on his bike!!! Predictive text......

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Hi I was diagnosed with Lupus in Feb 2011 and last year I had to have heart surgery due to lupus. I was back running 3 times a week at the end of last year. Interestingly in recent weeks my Park Run 5 K times are faster than 5 years ago. I dont have kidney involvement though, I would say it is possible to get a good standard of fitness back. Good luck and I hope all goes well for your son

Johnny B

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Thanks Johnny! Great to hear your positive experience. Sorry to hear it affected your heart. It's such a weird disease I am discovering!

All the best in your times in 2018.... Onwards and upwards :-D

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Just read some of your posts. I am drawn to the male ones because there are so few males on this site.

So so sorry to read about your brother. so tragic, at such a young age. It makes me thankful that fin (admitted into hospital on his 18th) was caught when he was. He had lost weight, his kidneys were 4th grade of severity, haemoglobin half what it should have been etc. But Fin was very lucky to be treated with the gold star lupus nephritis treatment the month the guidelines came out. I am thankful to your brother, your family for allowing his body to be examined after death and to you for fund raising for lupus and sharing your story . I am without doubt sure that has all contributed to a quick 'recovery' for Fin.

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Dee,

Thanks for your response and kind words, I believe collectively and through awareness and research we can beat this illness and these days at the very least with good treatment patients have a positive outcome. All the best Johnny

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It’s a two way battle, excercise definitely helps to reduce and control the fatigue. Small steps will lead to bigger ones. Best wishes Kevin

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H Deegraham,

There are people with lupus who are able to do very intense exercise. We have some who run marathons for us as fundraisers. Another example is Shannon Boxx who was part of the USA Olympic gold medal winning football team.

It is important that he builds up gradually, continues to be monitored by his consultants and doesn't push through pain if he is experiencing any.

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Just wanted to share my news that Fin, in spite of being so unwell 2 months ago and still not any where near 100% in the fitness department took part in a Para-international track race in Manchester yest and got 1second off his PB!! (btw he is para cos he was born with club feet). WOOOHOOO!!

@FinGparacyclist

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