To answer your questions
Hi from Australia,
I am 43 years old and have NSAA. I was diagnosed in March 2019. I have not needed transfusions and other than feeling a bit tired from time to time, I can cope with all that standard working and family life. I swim 1.5-2km once to twice a week. The first 3 months were the hardest, chasing information and worrying so much. I am writing this to provide background for you and any other patients who have NSAA and are wondering how others have managed this.
Question 1:
I have only found 1 study of moderate/non-severe AA in Adults from Korea. I can email it to you if you like.
AA is very rare. There are very few studies on this. Most of the studies are on SAA or VSAA. No one knows whether your bloods will decline quickly, decline slowly, plateau, or improve. Most haematologists will use the rule of thumb that a third will stay stable, a third will improve and a third will progress to SAA. Which is another way for saying they don't know what will happen with your individual case.
Question 2:
Are there any studies analyzing whether it is better to "watch" and treat later vs. fighting the roots and starting treatment early? What is the potential impact of early vs late treatment with regards to remission and relapse?
I could not find any studies analysing treatment options for NSAA.
The treatments are (1) supportive (blood transfusion, antibiotics, etc) and (2) BMT, and (3) immunosuppressive therapy which can be intensive with ATG/Cyclosporin, or non-intensive with Cyclosporin only.
Even low dose cyclosporin can have serious side effects, eg fatigue, hypertension, real impairment, etc. Steroids can cause Diabetes, avascular necrosis of hip needing hip replacement etc.
The side effects can be worse than the disease, if you are in the NSAA category.
BMT is really a treatment of last resort, as once you go down this path, you cannot go back. This is why it is reserved for SAA and VSAA.
Question 3:
Is permanent remission after IST at all possible and or is it always only temporarily (since one is not healed) but it differs how long it lasts for someone? Do you know of people with remission >20 years?
Permanent remission after IST is possible. Sometimes the remission is partial. Sometimes a second or third course of IST is required.
I have fortunately not required IST and also in watch and wait category. My counts have been stable since March and my haematologist thinks that once I have stable counts for a year, then it is likely that they will stay this way long term. I have my bloods taken every 8 weeks. Hb 104-114, WCC 3.5-3.7, Plt 55-60. All these numbers are lower than the normal range, but still ok for normal exercise, fighting off infections and not bleeding/bruising. These numbers are what people with VSAA or SAA hope for when they are treated with IST.
My haematologist says he has another patient like me whom he has been observing for 12 years.
At this stage do you need transfusions? To answer the question if your blood cells are going up or down needs regular blood tests to observe the pattern.
No one knows what the future holds. After a few months following your diagnosis, you should limit your time to researching this illness to only an hour or so every day, otherwise you can get bogged down in obsessing over this and that, what if, what then . . . Do your reading in the morning or early part of the day. If you research this late in the day, then you will obsess over it and think more and more.
Best wishes from Melbourne
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