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#1
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How to get in shape after AA remission?
I believe this is an easy question, but hard to answer. I'm in remission for 3 years now.
I tried a few things like basic exercise every day, Thai-chi, bike riding (which was good, for some time). My question is actually how to cope with shortness of breath which I'm experiencing when I exercise intensively. In the meantime, I've lost a sense for tiredness; when I run, exercise or work I don't feel tired at all but when I stop, I think I'm going to faint. What do You suggest?
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Diagnosed with AA in 2006; on CyA 2006-2014; treated with rATG in 2009; relapse in march 2011, high dose CyA + tapering - success (all values normal); low values in 2015; discontinued CyA, rATG+CyA December 2015; Working full time as of June 2016: CyA tapper to this day. |
#2
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rukalukavina,
I'm no expert but I have a few questions and ideas. Do you know that your hemoglobin level is normal? If you don't know it would be worth finding out. Are you staying hydrated? Vigorous exercise can easily leave you dehydrated. If you are overweight, a regular smoker, or have other medical issues, that can limit your capacity for exercise, although it's still important to do whatever exercise you can do safely. You may simply be overdoing the amount of exercise. General exercise is good for you, but I'd be worried about exercising to the point where you are short of breath. You may be better off exercising for a short period of time, even if you don't feel yourself getting tired, and then gradually increasing the time, but not to the point where you end up short of breath again. You may find it easier to avoid long sessions of exercise and have multiple shorter sessions instead. You can also do strength and flexibility exercises that don't involve as much aerobic activity. Even though you are in remission, your forum signature says you are still taking cyclosporine. The amount of exercise that's suitable for patients talking immunosuppressants is still an area of research so getting your doctor's advice about it would be a good idea. |
#3
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I think the cyclosporine affects your muscles in a negative way. Once I got off, things have gone very well (especially for my age).
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Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/ |
#4
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Hi rukalukavina,
I am a lifelong runner and have continued to run and race while taking cyclosporine. I agree with Neil's comments about the importance of hydration if you are exercising and taking cyclosporine. Also, if you are experiencing leg cramps, have your magnesium levels checked as cyclosporine causes hypo-magnesium. When starting a running regimen, it is important to start slow. This is true for everyone. I'd recommend starting with a brisk walk and then gradually add short bouts of jogging to those walking sessions. Each week, if you are feeling good, extend the time that you are jogging during your walk. Don't go fast, rather just concentrate on getting use to running. If you still feel bad, back off and just make your walks faster or longer for a while. Cyclosporine can constrict your blood vessels. So starting with this slow approach will help you understand how your body responds to the extra stresses of running. Of course, make sure that your doctor says that it is okay for you to do an exercise regimen! Also remember that you can not take any NSAIDs while on cyclosporine. Congratulations on your good response to ATG
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58 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent |
#5
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I don't have leg cramps, it's just when I finish exercising I sleep through the rest of the day
My Hg is fine, I take Mg but I often forget to take it. I hope the doctor reconsiders taking me off of cyclosporin this year, I will know more on Monday. Thank You, I will stick with these advises, especially about hydration
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Diagnosed with AA in 2006; on CyA 2006-2014; treated with rATG in 2009; relapse in march 2011, high dose CyA + tapering - success (all values normal); low values in 2015; discontinued CyA, rATG+CyA December 2015; Working full time as of June 2016: CyA tapper to this day. |
#6
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Hi rukalukavina,
Your comments made me remember that I did feel this incredible fatigue in the afternoons after intense exercise when I was about 3-4 years out from ATG and also was tapering my cyclosporine dosage. I did have a period of 9 months or so when I was completely off of cyclosporine, and I remember feeling like I new person, even though I didn't really think that I felt bad before. Maybe my body adjusted to the new normal?? I am back on a low dose of cyclosporine and don't notice the fatigue in the afternoons anymore. A possible theory for your fatigue is that although your counts may be normal, your marrow may still not be of normal cellularity. So, your blood pregenitors may be working extra hard to pump out the blood cells??? In any case, listen to your body, don't give up, and know that it gets easier P.S. If you are female, also get your iron checked.
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58 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent |
#7
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You may want to look at your hormones. Specifically, thyroid, testosterone, Estrogen, progesterone and DHEA.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K. |
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