is recovery definitive?

[Anja]

I live in Switzerland and suffered of Aplastic Anemia 17 years ago. I recovered after first treatment (the horse liquid) and 2-3 years of taking cyclosporine tablets.
Today after a yearly checkup, my doctor has found a very low hemoglobin result (6,7, for a woman). I was immediately given a transfusion of iron, acid folic and vitamin B12.

i can't help myself thinking it might be AA again.

is it possible? recovery isn't definitive?

thank you.

anja

[Neil Cuadra]

Anja,

Have you had low HGB in any other recent test? Counts can vary day to day so you might have a higher or lower result one day than the next. Did they repeat the blood test to be sure that the low HGB is correct? In any case, I think you should pay close attention to the results of your next CBC (complete blood count) test.

If your HGB stays that low then yes aplastic anemia is a possible explanation, but it could also be some other condition, and could even be temporary. Watching your blood counts in the coming weeks or months will be important. The doctor may need to examine your bone marrow to look for the signs of aplastic anemia or to rule it out.

The horse-serum treatment you received was antithymocyte globulin (ATG) and it can reverse aplastic anemia, but it's not necessarily a permanent cure. Some patients eventually relapse, including adults who had AA and ATG as a child. Luckily, many patients repeat ATG and get the same benefit. See Andrea Pecor's profile for one example. Andrea has had ATG five times and is doing fine.

[mscrzy1]

I agree with everything Neil has said.

I had the ATG treatment for my SAA 15 years ago and just a couple of years ago, I've had my counts dropping again. I've had cbc's done every year, so I know that I was fine before, but now seeing a drop again. They did the full up blood work and then they performed a bmb and it was inconclusive the first time and showed no signs of AA the second time. My bone marrow could be patchy, but my doctors don't seem convinced of that. They have started me on meds in the thoughts that I may have lupus causing my drop in counts and it seems to be working for me so far. My cbc in May will really be the true test because I will have been on the meds long enough to see a real change.

I'm just throwing this out there to let you know that you're not alone in seeing your counts drop again 15 years or so later. It could be AA again or it could be something else. Make sure they run the full battery of tests again to see what they find. Keep us updated because I'm really curious how many of us long term AA people see drops in counts again and what it may mean for each of us.

[Anja]

Thank you for your replies.

My doctor has made further blood tests and one has shown that my (sorry if I don't use the proper terms, all in French on this side) Marrow works well. That’s why my platelets and white cells count are ok. He said - and I made him repeat - "it's not AA". He then asked me if I had stomach pains or intestine problems because apparently an ulcer or some intestine disease could cause a severe drop in iron.
He then concluded until further tests that i have a very common iron deficiency anemia. i felt so relieved! But in the same time, I now know that AA can come back anytime. "Damocles' sword above our heads" we say in French.
It’s likely that i have been gradually lacking iron since birth of my daughter 3 years ago. It’s true that since I haven't been to my yearly blood tests. I was told off for that by family and doctors... so lesson learned!
I have another blood test this week to check if the iron transfusion is being absorbed correctly by my organism and some other tests. So as Neil says, they are going to watch the progression of my HGB during the next months. If it goes up! it's good news and nothing to worry about... if it continues to go down... well let’s hope not!

thanks for your support! wish you all a happy easter from Switzerland!
anja

[Sara J]

Hi Anja,

We thought my husband was 'cured' of AA in his late teens. Now, in his mid 40's, it's back. He has been on watch and wait for just over a year and is now on prednisolone.

I'm glad you don't appear to have AA. I hope your treatment for anaemia is successful and your levels return to normal soon.

Good luck

Sara

[Anja]

thanks Sara J,


well... seems like it's more complicated. today the doc saw that my Hemolyse level was bad. my red cells have gone up froom 7.1 to 7.7 but the more my red go up, struggling, the more my white are destroying them!

so now he diagnosed me as having an auto-immune hemolyse anemia. the treatment for the moment is prednison like your husband to shut those white cells killling everybody!

i'm back for more tests next week.... lets hope he doesnt come up with a new anemia something...

hope your husband gets well soon and cures again from AA.

Anja

[JoaquinM]

Originally Posted by Anja

I live in Switzerland and suffered of Aplastic Anemia 17 years ago. I recovered after first treatment (the horse liquid) and 2-3 years of taking cyclosporine tablets.

Hi Anja,
I went under the same "horse-treatment" in Basel, Switzerland, 29 years ago, when I was 11 years old (I´m 40 now). Head doctor of the section at the clinic (Kantonspital Basel) was Dr Speck (sp?), and Dr. Gratwohl followed him a few years later.

I have been living with low plaquetes for the last 15 years (20 - 30 thousand, compared against the normal 150 thousand). I found this forum doing an Internet search, since my last count was at 20 thousand a month ago, and it was never this low so far. I go back and forth from 23 to 30K, but having lived like this for 15+ years didn´t make me nervous (I do complete blood tests each 4 months and visit an hemathologist once a year.

My clinical story might help others, I went under liver surgery 15 years ago as a result of a beningn tumor caused by the testoterone based medication (Nilevar) after the AA treatment. Afyer dropping those pills after surgery, my plaquetes count dropped to 30K and I have been living with that since then. I developed Diabetes Type 2 though...but I can control it with diet and excersice. I take no other pills other than 5mg of folic acid, and the diabetes pills at night.
I had a bone marrow test some 6 years ago, production showed low, but that was it...

Kind regards, greeting from Buenos Aries, Argentina,

Joaquin

[JoaquinM]

Originally Posted by Neil Cuadra

The horse-serum treatment you received was antithymocyte globulin (ATG) and it can reverse aplastic anemia, but it's not necessarily a permanent cure. Some patients eventually relapse, including adults who had AA and ATG as a child.

Hi Neil,
is there a specific section in the forum where I can post my AA story and experience, so I don´t "hijack" this thread? It might help others in some way, maybe even because my treatment was almost 3 decades ago, and as per my understanding, in the begining years of the ATG in Basel Switzerland (back then, treatment options were in Switzerland, the USA, and Israel....I was taken to Switzerland because I speak fluent German, but no English back then).

Thank you,

Joaquin

[Neil Cuadra]

Originally Posted by JoaquinM

Hi Neil,
is there a specific section in the forum where I can post my AA story and experience, so I don´t "hijack" this thread?

Joaquin,

It's generous of you to offer to tell your story to help others. You can click the New Thread button on the Tell Your Story forum page to start your own thread.

[JoaquinM]

Hi Neil,
I will do so this weekend, I just didn't find the time yet, as I want to re-check some facts...a long time passed, and some things are a bit blurry.
For example, I just remembered this week, that the first bone marrow transplant in Argentina was in 1986, at the British Hospital. I had my SAA four years before that...I have to even check if we still had the military dictatorship at the Goverment, or democracy already.

Kind regards,

Joaquin

[Anja]

hi joaquin,

well we could have had the same specialists but i was treated, and still am, in Geneva.

well now, i have had four doses of Mabthera to treat my hemolyse... but it's not working well so i'm getting a dose every month now until... well until it works. in the meantime, i'm still on prednison, but on a lower dose thank god because the side effects were very unconfortable.

What can one do to reduce the cortison side effects? any tips?

thanks.