ATG Success

[TASHMAC]

I rapidly developed VSAA (within approximately 4 weeks) and had ATG (horse) in November 2012. By the end of November I was transfusion free - amazing and by the beginning of March I had completely normal blood results and still do. My hgb has caused me some issues and has been up and down a bit but otherwise things are relatively stable (RBC is constantly below normal but not drastically) so I feel incredibly lucky.

I am still on cyclosporine (tapering at the moment - currently 225mg a day) and was on cyclosporine and prednisone until March. I am pretty good at remaining positive but it is hard to let go of the fear of whether this crazy disease will ever come back. Like a lot number of us they have no idea what triggered my AA.

Apart from wanting to let people know that ATG can and does work I wanted to hear whether anyone has had similar success to me with ATG and whether they are still in remission or whether it has come back.

My doctors seem to think only about 5 to 10% of people achieve normal blood results on ATG and that the likelihood of relapse is 16 to 20%. I figure these are reasonable odds but still frustrating at times.

Good luck to everyone out there having ATG, having had ATG or contemplating it.

[curlygirl]

It's great to hear about your success! I'm glad it worked so well!

[ssdavi71416]

Glad to hear you are doing well. My counts are Hgb 12.9, platelets110 and WBC 4.3. Still on 300 mg/day cyclosporine. I had ATG April 5th , 2012. Working every day and trying to forget about the disease.

[Karenish]

I had rabbit Feb 2011 - November 2011 my counts started to climb - now near normal except plates which go from 60 to 81 - had shingles inbetween and recovered more quickly than a "normal" person.
I too ignore to an extent that I have AA - I work full time as an occupational therapist and plan ahead for years. I think getting counts back with ATG is much higher than you state, and relapse is always on your mind. But I have changed my diet to one of non GM foods, totally free range and organic. Only put perfume on clothes and do not reheat with plastic! In fact I do everything that everyone should who wants to prevent cancer!! Drinking lots of water... it is now nearly July 2013 and I feel great! cyclo still twice a day 175mg but will start a very very slow taper soon.

[NLJabbari]

Hi Everyone, Just want to congratulate those who are doing well on treatment. I'd like to add that personally, I think that in order to avoid relapse "A very-very slow taper of CsA" is key! Also, I don't think all CsA's are created equal and would opt for a name brand like, "Neoral" especially if you're one of the one's who might need to be on CsA "long-term" as like for years!
Again, I'm not an expert and am only sharing my personal opinion/thoughts.

We've been on this journey for 9 years and my son has only had 1 round of ATG(H) He responded at around the 6th month mark and was fortunate to obtain "Normal Counts" on all 3-lines. He was weaned rather rapidly and was off all meds for approx. 13-14 months before we noticed the decline in numbers. Rather than getting a 2nd round of ATG, his doctor once again started him at a very high dose of CsA and slowly brought it back down in hopes of a slow wean. Unfortunately, he was never again able to obtain "Normal Counts" in all 3 cell lines (WBC, ANC, Platelets, in Normal Range), but had decent counts. He currently is still on a very high dose CsA and is having difficulty sustaining his Hgb and Creatinine is slowly creeping up.

His peripheral blood shows a 20% PNH clone, yet the bmb pathology report states otherwise??? I'm confused about this, but haven't really addressed this with his new doctor as in the last year we've switched doctors from Pedi Med to Adult Med. We dismissed my son's last Adult Med Hemo as she truly was not qualified to treat AA and are now with a new doctor who we're barely getting to know, but is qualified. She believes another round of ATG would not benefit my son due to the 20% PNH clone and has recommended Bone Marrow Transplant. This will be the 3rd time this recommendation has been offered.

So, this is where we are at and why I believe that a very slow taper is crucial and in the case of a relapse, a 2nd round of ATG is better than trying to increase CsA to bump up counts. Again, I'm not an expert but I just want to share my two-cents worth.

[EmilyS]

In 3 weeks it will be 2 years since I was diagnosed with SAA. I had my first round of horse ATG in Oct. 2011. I had some response within the first month, but not much. I had my second round of horse ATG in April 2012. My platelets and white cells responded in a couple of weeks. The red cells took a little longer. I was on Cyclosporine from the start. Last Oct. (2012) I began a slow taper. I wasn't on a very high dose to begin with. My counts were all in normal range as of March this year. I got off of ALL medications in July! My counts are still rising, and have all stayed in the normal range. I have felt good since my counts have come up, but I have felt wonderful since I have gotten off of all medicine. Remission is an awesome thing. But like others have said, the thought of relapse is still there. My doctor says that the first year off of cyclosporine is the most critical. I get labs done every three weeks, so I feel like I will see a change as soon as it starts. Best of luck to all those fighting this tricky disease.