Exercise and Vasculitis

[Support_helps]

Hello, recently diagnosed with renal-limited vasculitis and trying to adjust lifestyle as best I can. Quit alcohol and eating a healthy diet which feels great. Wondering about weight training and if anyone has experience. I enjoy weight training a lot for mental health and to keep my strength but I also don't want to overdo it either. During the long days I find that just carrying weights and listening to music can help with the mental management of the disease. Would love to hear from anyone who also benefits from weight training and whether they are seeing positive mental and physical benefits over time. Thank you!

[nurse_betty91]

Hi- I do some weights as part of my strength training for running ( I was diagnosed 12 years ago, my most recent relapse was just over 2 years ago- successfully treated with Rituximab- had my final infusion in February this year). I’m currently training for the Great South Run (10 miles) in October. Talk with your consultant about your fitness goals and how you’d like to train and they will advise you accordingly. Exercise is key to well-being and helps you to know your body better- and rest whenever you need to. Good luck!

[Support_helps in reply to nurse_betty91]

Thank you this is very helpful Betty.

[Investigator1]

Hi Atimlin_1 . I have GPA, it started with Renal involvement which is now stabilised and my kidneys are functioning well. I have always been quite active and when diagnosed I was determined it wasn’t going to stop me exercising, I play Badminton, Cycle, Power walk and Weight Train. I am not a fanatic and I appreciate some patients can’t do the physical stuff because of their condition or treatment. That first year I pushed and pushed my training, days during the summer of 2020 (Lockdown) I didn’t want to get out of bed never mind get on a Cycle of start pumping weights but I did. My Consultant said “listen to you body” and “don’t feel guilty about taking test “ and I know it got me through mentally and physically. I am probably doing more exercise than I was before diagnosis, I eat a low carb, high protein/fibre diet (not as severe as Keto) but I still drink alcohol of a weekend. It works for me. My advice is if you willing and able then do it.

[Support_helps in reply to Investigator1]

Thanks for sharing your experience, it kind of sounds like somewhere I wish to go. Best wishes in your ongoing journey, Allan🙂

[Investigator1 in reply to Support_helps]

No worries Allan, all part of the journey. Let me know how you’re getting on with things. I have my Rituximab infusion next Wednesday which will probably slow me a bit but Hey! It is what it is. Take care. Nick.

[eh66]

I follow a pretty similar regime to investigator. I have gone from been wheeled into hospital three half years ago plus biopsies and several infusions to cycling thousands of kilometres plus running and weights. You definitely have to listen to your body but not your mind (which will try and talk you out of it until good habits form). My consultant said words to the effect the fitter you are, if you have a relapse, your body will cope with it better. I think diet is really important, avoid the ultra processed foods,eat plenty of of vegetables and fibre, especially those with anti-inflammatory properties. I also do intermittent fasting.

[Support_helps in reply to eh66]

Thank you that all sounds very good and positive for me. Congratulations on your remarkable progress and my very best wishes going forward!

[Investigator1 in reply to eh66]

Well done eh66. Good words and ultra sensible. You’re spot on with the coping better with relapses. I still have my treats but they are just that , a treat.

[eh66 in reply to Investigator1]

Thanks. We all need our treats but as you say that's what they are after putting in the work.

I listened to a Michael Mosley podcast recently about getting older, and one of the points made was as you get older you lose muscle mass, and in the worse can senario become reliant on other people for basic necessities like going to the bathroom. Body weight exercises in your own home can go a long way to preventing or postponing that situation. In some respects, this damn condition is like getting older at a younger age. The latest research regarding dementia indicates weight training is very beneficial, more so than some memory apps.

[eh66]

Good luck to you too

[Johndeeregreen]

Like others mentioned above, listen to your body but know that physical fitness is one of our key tools combatting this crazy disease. I primarily run and hike but should add weights. The physical benefit has definitely helped me recover better after some pretty bad hospitalizations and surgeries. However, the mental benefits of exercise has been even more important. It’s my replacement for anxiety drugs and in my opinion much more effective to get the free natural endorphins from exercise that are well proven in the research. Diet is also important and I need to work on this. Keep the fight!!

[Halebopp]

Hi - I have the same type of vasculitis as you. I was diagnosed 10 years ago, placed on prednisone for 9 months & cytoxin for 6 months. Was on azathioprene for 3 1/2 years after the cytoxin. I’ve been in remission for at least 9 years. The prednisone did a lot of collateral damage to my body & resulted in several surgeries. Therefore, I’m not able to workout or exercise like I would prefer. However, I do what I can and I try to eat a mainly plant-based diet. I’m currently in an Alzheimer’s study with the American Alzheimer’s Association & I can tell you that for brain health, heart health, & health in general, eating mostly plant- based, weight training, & aerobic exercise are emphasized. Also community. My nephrologist is in full support of this & while I can’t work out at full tilt, none of what I do has hurt me, so far. Good luck to you. Stay positive!

[Support_helps in reply to Halebopp]

Thank you for your story.....I really appreciate those guidelines. I am planning to stick to those categories you mention: eating mostly plant- based, weight training, & aerobic exercise. Wish you the best with your participation in that study and I hope it will yield some positive outcomes for you! I am trying to stay positive, yesterday was the 1st time negative thoughts started to creep in but that is why I need this support group because I know I am not alone. Kind regards Allan

[Katie18]

hello my consultant told me to exercise lots even when I don’t feel like it. Good luck

[Support_helps in reply to Katie18]

Thank you that's what I am trying to do now, so far working out quite well. Certainly helps when negative thoughts start creeping in.