Hi everyone, I have a rare autoimmune illness Henoch Schonlein Purpura, which is similar to Lupus / SLE and wonder if anyone has any experience running or doing triathlons with kidney problems / transplants? I relapse (kidneys go on strike) if I push myself too hard, and wonder if I will ever be able to complete any endurance event. I read for lupus sufferers, only light exercise is recommended. Several pro athletes had to quit after being diagnosed for lupus. Not that I want dream of being pro. I just want to finish, say a marathon or an olympic distance triathlon, and while I’m at it, maybe an Ironman hee hee. Appreciate hearing your experiences / thoughts on chronic illness and endurance events.
As an autoimmune sufferer myself (Chronic Inflammatory Demyelinating Polyneuropathy) I can sympathize with relapses and difficult holding training schedules and pushing oneself too hard. For myself, I have had to learn my triggers and take action early to prevent damage during an active phase. My triggers include anything that spins up the immune system (lots of supplements) but strangely enough the worst offender is folic acid fortification in foods. I take small prednisone doses as needed for 3-5 days when symptoms appear, but once active symptoms fade, get off them as soon as possible as they kill recovery and have a host of negative side effects long term.
Due to kidney involvement, I would not recommend attempting hard efforts (say above 65% max HR) due to the decrease in filtration rate with higher heart rates as blood is shunted to feed working muscles and remove waste products. You will need to be careful with electrolyte replacement as well, and medications may cause either the loss of potassium (corticosteriods) or loss of sodium (most diuretics). However, I would image you could complete a century or other endurance activities given slow progressive training and learning your own physiology a bit better.
Tom, thanks so much for sharing your experience and for the very helpful advice. I am just starting out on my journey (triathlon and other endurance pursuits) after successfully (I hope) weaning off the corticosteroids (12 years on and off, mostly on). I normally know what triggers my relapses (lack of sleep, stress, chemicals), but adding training workouts also add more stress to my body and I find my body is responding differently to things now. I guess I will have to relearn my thresholds for these triggers as you say.
That’s a really good point about going below 65% max HR due to kidney involvement and makes good sense. I have been taking a bunch of supplements, mostly organic and natural whole-foods type, which help with my chemical sensitivities. It didn’t occur to me that supplements might spin up my immune system until you pointed out that they are one of your triggers. Something I will definitely keep in mind. I’m sorry to hear that you have CIDP but am glad you are coping well with it, and very grateful that you took the time to reply.
I was beginning to think that nobody would reply, perhaps there are very few folks with autoimmune illness that attempt to train for endurance events? Feeling very encouraged. Thank you!
