Response to ATG

[MelanieW]

Hi Dena
That is wonderful news that your counts are rising. Since I also had horse ATG in March 2012 I thought we could compare counts.
Last week counts for me were HGB 8.3, WBC 4.4 and Platelets 31,000. This week is the 3 month mark for me.

[JoaquinM]

Originally Posted by glitterandlace

I am VERY interested in hearing your story. Please give me the thread to your story!!!!! Just message me. =-) I am a firm believer also that you should not go to such drastic measures (ATG, Cyclo, Stroids) unless your levels are so continually low, that you are at risk of death. As long as you are transfusion independent IS the most important thing. Then you can work on it from there with diet, supplements, or herbs,,,ect. I am wondering how do you get your teeth cleaned with platelet levels that low? That is the only thing I am scared of doing right now. I haven't had my teeth cleaned for almost 2 years because of AA. =-( But my platelets are a little lower than yours. I won't get a platelet transfusion now until my platelets drop below 10. Before I was getting transfusions when my platelets were in their 20's at the doctors pressuring. I have now realized you REALLY do not need a platelet transfusion in your 20's. But I wish to be in my 20's again like you.

Hi! sorry I didn´t reply earlier, but it seems like I didn't configure the forum options to let me know when there is a reply, I will have to check that again. I haven been very busy because I will be moving to the UK (Nottingham) in 3 weeks, so I should be able to make that post this week.
About your questions: my platelet count dropped to 16.000 so my doctor proposed Danazol, which I will start tomorrow. I don't like the idea, since steroids caused a tumor in my liver about a decade ago.
Even with this 16K count, I have no nose bleeding at all, and no gum bleeding at night (which I had before ATG more than 3 decades ago). I got a blood extraction 2 days ago, the needle didn't leave a mark at all, and the puncture stopped bleeding almost right away. This happened at least the last 5 times I got tested, I usually got a nasty round blue mark that lasted for at least a week. But only when the needle didn´t go into the vein right away (my veins are crappy and thin).
Brushing my teeth is not a problem at all....if my gums bleed, then the bleeding stops in about 3 minutes or less by itself.
I´m going to acupunture right now, tomorrow will be my 5th time. I feel stronger and with more vitality, but the blood count didn't change so far. At least not the platelets, I will have to compare the rest to the test from a week ago. And I started to take shark liver oil pills just to see...but I see no results in the tests so far (have been taking them for two weeks now).
I will post all of that in a separate post, I will try to do that this week.

The strange thing is that I feel exactly the same way with 16K platelets than I always felt with less than 30K. Actually as I said above, I feel stronger after I started to go to acupunture. It might be even be some sort of placebo effect, but honestly I don't care, because at the end, I DO feel better.

I will PM you my e-mail in case you want it, no problem at all

Take care,

Joaquin

[Neil Cuadra]

Originally Posted by JoaquinM

Hi! sorry I didn´t reply earlier, but it seems like I didn't configure the forum options to let me know when there is a reply, I will have to check that again.

Joaquin,

To receive email when somebody posts in a thread that you are interested in, such as this one, you can "subscribe" to the thread. See How do I subscribe to a thread? in the FAQ.

To automatically subscribe to each thread in which you post (from now on), you can turn on "automatic subscriptions." See How do I set my default Notification Type and Automatic Subscription option?.

[aplasticgirl]

The first time I had ATG I had absolutely no response and remained platelet/RBC transfusion dependant for 12mths. I wanted to keep waiting for a response as the next step was unrelated BMT. They then decided to try ATG once more, after the second ATG I was transfusion dependant for about a month and then my counts slowly stabilized and started to rise.

[Leung]

Hi all,

I haven’t posted here for long since my last post in June 2011, 10 months post ATG of my teenage niece, who had been diagnosed moderate AA moving towards SAA. Her conditions deteriorated significantly recently and I really hope to get some advice/sharing from AA patients or their carers. Thanks to this forum. I have learned a lot from you all friendly members who are willing to share their knowledge and experience.

Since receiving ATG in mid 2010, my niece’s blood counts in fact only improved a bit but saved her from red cell transfusion for a year (she did not require platelet transfusion before ATG). 16 months after ATG, her counts could not hold and re-started to have red cell transfusion again every 2- 3 months since early 2012. Her platelets plummeted in Dec 2011 from about 40 to 16-25 and then trending down gradually to 11- 15 in Jan 2013. Doctor then prescribed steroid in mid-Jan 2013. In late Jan 2013, she got high fever, followed by vomiting and bloody diarrhea. Platelets dropped to 6k, needed platelet transfusion for the 1st time. Her hgb then dropped significantly from 9.8 to 7.1 five days later and required transfusion. We later knew that she was diagnosed hypovolemic shock, disseminated intravascular coagulopathy, gastrointestinal bleeding, hyponatraemia, hypokalaemia, but blood and stool culture results were both negative. She stayed in hospital for 10 days and was discharged after antibiotics treatment,. But unfortunately, only after three days, she vomited again with fever and once again, her hgb dropped drastically to 6.4, just a week after the earlier transfusion, and platelets dropped to 5k, and so required red cell and platelet transfusion again.

We worry a lot for the significant drop in hgb and platelets. Doctor said that it is probably due to infection. My niece is receiving antibiotics treatment again in hospital. We worry that she might not be able to recover from this infection. Our doctor mentioned doing bone marrow transplant for her AA. We are scared to death about BMT (my niece has no sibling match) and hope to repeat ATG. However, my niece’s response to the first ATG is disappointing. My niece now resists treatment and was emotionally unstable. My niece’s mother (my sister) already got depressed because of her daughter’s disease. We feel very frustrated and desperate. Would appreciate a lot for any advice/views or sharing!


Leung

[ssdavi71416]

I have had a sucessful (so far) ATG treatment. If it had not been sucessful I would not hesitate to go with BMT. As for the emotional issues SAA changes your entire body chemistry. I would recommend starting the BMT process even if you do not have a related donor. BMT has risks but offers a cure. The other option is to call/visit the NIH. I have heard that Dr Young is great. Clinical trials with medications like Elthrombopag have had sucess. One of the teenagers in my support group went to NIH in November and is possibly doing the elthrombopag trial. Good luck and God Bless.

[Leung]

Thank you Scott for your advice and congratulations on your successful ATG treatment. Wish your good response will continue to sustain for long. Our hematologist doctor has recently scheduled for us an appointment with the transplant doctor two weeks later. By then, we hopefully can get a better understanding on why BMT is recommended instead of 2nd ATG. I personally at this stage hope to try 2nd ATG before going to BMT as it seemed that my niece had partial response to 1st ATG, though the improvement could not sustain for long. I hope that 2nd ATG could kick in and provide sufficient immunosuppression to wipe out the rogue T cells and allow the bone marrow to restore.

[prayingrbc]

Dena, my father is going through complications with his first roung Horse ATG
now. You mentioned it has been a year since your body produced wbc and plts on their own. I am curious what your levels were on average with ATG and supportive therapy in the interim.

Thanks

Originally Posted by dfantle

Hi, for the past year, until my Horse ATG this past March, my platelets were regularly in the 10-15k range and I was getting platelets 2-3x a week. I hadn't been to the dentist for a year and wanted to go before my ATG treatment, so my team scheduled a platelet transfusion the day before my cleaning, did a post count to ensure it was high enough (think it was in the 30k range) and gave me clearance for a light cleaning.

I'm now 2 months post ATG, and ever since, I gained at first 1day each week between platelet and blood transfusions, and GCSF shots, then 2 days and it's now up to 2 weeks (big difference from 2-4 days for Platelets, 1 week for blood and 2-3 days between GCSF shots). I'm cautiously optimistic, but also realistic that this may not continue to stretch out. Though It now looks like I'm starting to produce a few white cells and platelets on my own, which is so great after the last year of no production.

Please excuse typos. Sent from my cell phone