long-term, post-ATG AA relapse

[mscrzy1]

Hello! I was wondering if there are any other people who have went through the hATG/cyclosporin/steroid treatment and had a successful remission for many years, just to have a possible relapse later? I was treated with the ATG therapy 13 years ago and pulled out of my severe AA with normal blood counts for the last 13 years. Recently, my counts have dipped below normal again. They aren't severe (like I was used to), but they are all low with a high MCV. I was hoping it was just a fluke test, but tested with low counts again this week.

[Marlene]

Unfortunately, relapses do occur even after a long remission. With a high MVC, make sure they check your folate and B12 levels as well as homocysteine and MMA to further rule out a B12 deficiency. Your B12 needs to be at least in the mid-normal range around 500.

Also, if you have just gotten over a cold or flu, that could impact your blood count.

[squirrellypoo]

Hello!

Yup, that's me - my ATG back in 1984 worked wonderfully for nearly 25 years... There was someone else in here who has gone 25 years as well, but not many have lasted longer (mostly because ATG wasn't done much earlier than the early 80s AFAIK). Prof Marsh told me that they know now that ATG usually only lasts for 5-15 years, but back when I had it they told my parents I was cured for life!

But I'd agree - don't get too worried over one isolated dip.

[mscrzy1]

Thank you for your replies. :-) My hemo has tested my b12 and folate levels. I've not been sick with flu or cold. My MCV has been elevated since ATG and never went down. My old hemo informed me then that due to elevated MCV my chances of relapse were very high, so this isn't too much of a surprise really. I got 13 good years out of it, though. I'm currently getting every blood test under the sun performed before getting the BMB. I've also been having Reynaud's syndrome issues developed since testing with low counts. Dr. doesn't think it's related to AA relapse, but I've read that it sometimes can occur with MDS. Anyone experiencing this?

[mscrzy1]

squirllypoo, When you saw a relapse, was it a slow decline for you in counts or was it dramatic? This week was my third abnormal cbc and my counts seem to be slowly declining. Actually, when I charted my counts throughout my remission, I saw a dramatic increase immediately after ATG with a steady downward trend as the years have gone by. Now that I've gotten down into the abnomal count range, I'm wondering if my body will continue in this slow downward trend or suddenly drop off to counts like I saw with my first go with AA. It seems like my bone marrow is the little engine that could slowly pooping out.

[Ryan Jay]

That's the first I've heard of an elevated MCV as a risk factor for relapse. Any justification for that? Any relationship with cyclosporine dependence?

My MCV seems to run a little higher but nothing too out of control.

[mscrzy1]

Ryan Jay,
I'm not sure what my old hematologist's justification was for that. At the time, he was working in conjunction with Dr. Neil Young at NIH. I'm not sure if this is something he discussed with Dr. Young or not, but my dr. informed me that due to the elevated level, I was at a higher risk of relapse and AML. I do know that my B12 levels were checked and were in the normal range at the time. My hematologist always reminded me that ATG was not a cure. I was always so frustrated with him for his doom and gloom at the time. I just wanted to be happy. Anyways, I have been cyclosporin free throughout remission.

You have to remember that ATG was still trial and error in 1996 yet. My hematologist removed me from cyclosporin at 6 months (Oct 1996) even though I didn't have marked improvement with my AA at that time. I had my last blood transfusion in August 1997 and started to slowly see improvement with my counts after that transfusion. Drs. know so much more now about ATG than they did when I had it in 1996, so my hematologist's hypothesis that it could relapse due to the evidence of my elevated MCV could be null and void now.

*edited to add - I reviewed all my old medical records and it seems that my MCV was normal throughout AA, but started to show significant increase when I started to see improvement with my blood counts. I can give you an indicator of what my MCV levels have been. When I first hit "normal" blood counts post-ATG they were sitting around 121 - 123.7 and dipped after that slowly down and actually did hit the normal range for 2 years (immediately following the birth of my girls 6 years ago, interestingly enough), but has been on the rise again as my counts have been dropping off and now is sitting at 107 - 109.*

I will also add that after doing a lot of my own education on the recent developments they've come up with in AA and MDS, I have a suspicion that what I may be seeing is a slow moving secondary MDS. This is simply a guess on my part. I'm trying to be objective with it all and praying I'm wrong all at the same time. We'll have to see what a BMB shows. Yuck.

[squirrellypoo]

Originally Posted by mscrzy1

squirllypoo, When you saw a relapse, was it a slow decline for you in counts or was it dramatic?

Mine was very fast indeed. The first signs were burst blood vessels in my eyes in October (plt of 50), I was getting transfusions in November and December, they started the BMT process in January, and by June I was getting four transfusions every week (2 red and 2 platelets). I don't think I would've lasted much longer if I hadn't had my transplant when I did, to be perfectly honest.

But we have no idea if my counts were slowly declining for years or not, because they were never checked (because no one told us this would ever relapse!). So it's hard to say. But I was very, very healthy and an avid runner for years, so I'm almost sure I would've felt an Hb decline more acutely than most people had it occurred before that October.