Hi friends! Diagnosed with ET approximately 8 years ago, but like many of you, there are indications that I actually had ET for several years prior to that. Platelets most recently at 860, after after years of being relatively stable between 600-700. Only treatment is daily aspirin. I am 57 years old.
At my last appointment with my MPN doctor, noted that there are three general situations (excluding an actual thrombotic event) in which he considers treatment (beyond aspirin):
1) Age 60 and over - he puts this in the mandatory bucket (I have read on this forum that not all agree with this - i.e., others that feel that general health should be a factor as well).
2) Platelets over 1M - again another of his pretty much mandatory events.
3) Patients choice - generally to manage symptoms.
Other than fatigue, my symptom's are relatively minimal. But the fatigue is a real problem - and every year it becomes a bit worse. I exercise regularly (which helps) and eat well (albeit with a bit too much of a sweet tooth).
My question is...do any of the treatments for ET actually help with fatigue?
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LT55
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I have Dx of PV with ET features. My current treatment with Besremi IFN has added to my fatigue, mostly in form of weakness. It gets worst when I up the dose. I'm hoping with time this will improve, and I still prefer IFN to HU.
I believe I get some relief from NAC supplement (N-acetyl cysteine) There are various posts here about it. You should inform Dr if you want to try.
I agree with Mostew here, sugar tends to make things slightly worse, we've cut down some bad stuff.
Some people do find that the cytoreductive medication can help with fatigue. Others have fatigue as a side effect from the medications. We each respond quite differently.
I experienced fatigue a a side effect of therapeutic phlebotomy induced iron deficiency. I felt much better when I went on the interferons and my iron levels came up.
I did also find out that I was Vit B/folate, Vit D, and Magnesium deficient despite a good diet. Sometimes we have difficulty metabolizing the vitamins needed to support vitality. You might want to consider a nutritional analysis to assess your status. There are different sets of blood work your care team can run to see what your status is. My doc used the NutrEval panel.
MPN Voice has some good advice on dealing with fatigue.
fatigue is the number one symptom with MPN as we know, regular exercise seems to help , it can be hard to get off the sofa and brisk walk or jog or cycle etc for 30 mins but over time it helps, most of the experts recommend it. I try to optimise other areas of my health to hopefully compensate for my PV. Good healthy food is important, sugar is not ideal unfortunately. Maybe some supplements if testing shows deficiencies. Peg can lower thyroid so checking on hormones can make a difference as we age. If checking thyroid the test must include Ft3 and should be near top of range as opposed to just being in range, TSH is only a very rough guide. HRT and TRT done properly can make a big difference is people are deficient which is common as we age also.
As I am sure you know it is subjective for the individual. In my case I was diagnosed with PV at age 50. Treatment of phlebotomy and aspirin only until age 55. I was fatigued from the 5 years of phlebotomies and resultant low iron and my platelets were 1.3 million and extremely high. About that time Besremi was fda approved. This seemed like a good option for me even though I was previously told to wait until I was 60 and then take hydroxurea. Been on Besremi now for about 7 months. Phlebotomy frequency has gone from once every 6 weeks to once every 10 weeks when my hct rises above 45. I am told this should improve even more and potentially eliminate the need for phlebotomies eventually. My platelet count has also decreased dramatically. So far Besremi has been a positive for me. I have a ton more energy and have resumed exercise and golf on a regular basis. I don’t know for sure but I can only assume this improvement in fatigue is from Besremi. My theory is that spacing out the phlebotomies as facilitated by Besremi has allowed my iron to increase improving the fatigue component, but not sure. I am sure that reducing my platelet count to more reasonable level may have also helped. Hope this helps from a general standpoint even though we all respond differently. I was very reluctant to go on meds earlier than anticipated but so far so good. Best of luck!
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