Side effects of ATG/cyclosporine

[Leslie850]

Need some info from those who have been through this. My 78 yo mom was diagnosed with very severe aplastic anemia two weeks ago. Diagnosis took forever (two bone marrow dry taps before they were finally able to get a biopsy). Docs also call it pancytopenia. She had 9 days of hATG with cyclosporine. First 6 days she has 1250 ml (?) of atg and doc upped it to 2000 last 3 days. She did great (no side effects) until the last 3 days. Now she can't stay awake, can't get out of bet, her biopsy site did not heal and she has gaseous gangrene at the site. Atg treatment just ended 3/15/14. Her counts WBC were .13 and platelet 14K as of Sunday. Is this normal for treatment response for someone her age? They also gave her neutropen starting today. Any info is so much appreciated.

[Leslie850]

One more thing. The steroid they have her on us solu-medrol. I have read that there are a lot of side effects from this, particularly acid reflux. Anyone have any experience with this steroid and would you recommend we go to something else?

[dfantle]

Leslie, acid reflux is common with steroid use. The steroid that I was on for my ATG two years ago was prednisone, which may be more commonly used, but I'm not sure. I'm not familiar with the steroid you mentioned, however it's fairly common for the doctors to prescribe Prilosec or something similar to help with the acid reflux while on the steroids. It might be good for her to take the steroid with some applesauce or something similar, followed by a lot of water to help prevent oral thrush (yeast infection) which is a common side effect of steroids. Her doctors should also be watching her blood sugars very closely as they can increase while on steroids. I had to give myself Insulin injections 1-3 times a day to manage the glucose levels. However once I went off the steroids my glucose return to normal.

Regarding your Mom's other issues:

Fatigue following ATG is fairly common, not only from the treatment related impact, but also from the immunosuppressive medications she is likely taking following the ATG (likely cyclosporine or Tacrolimus). She may also be fatigued from the infection.

The infection is troubling and I would hope she is at least on some sort of IV antibiotics to help control this so it heals and doesn't spread.

Beat Wishes.

[Leslie850]

Thank you for the support. We got the call to come to the hospital last Wednesday as they did not think my mom would make it through the night. This was 3 days after hATG treatment completed. She can't walk, has to use a bed pan, was in a lot of pain, had multiple infections and heart was tacky. Then all of a sudden she started to stabilize. Still can't walk or use the bathroom and her blood numbers (hemoglobin, ANC, monocytes) have still not risen but we are only one week out of treatment. But everything else is stable. Actually had some doctors say if her numbers were better by this Monday, they would consider treatment a failure. Only a week after treatment??? Wait, what? Anyway, we talked to more docs and we have called bull on that. Given what we have seen on this forum and what the AA foundation says, we shouldn't expect movement for several weeks, correct? My question is this, have we likely hit the lowest point (the few days after treatment ends)? She is getting blood and platelets nearly every day and her infection appears to fe controlled by the 4 types of antibiotics she is on. Just trying to understand what we can expect from your experience.

There is no "normal" with AA. That much we have learned. Everyone is different and everyone responds to treatment differently. If anyone knows of a good AA doc in Florida, we would love to have their name so we can call for a consult. My mom is at Baptist Health in Jacksonville, Florida.

Thanks so much for the support.

[Leslie850]

Should have said doc said if her numbers WERE NOT better by this Monday, they would consider treatment a failure.

[KMac]

Leslie,

Good for you on calling bull when the doctors said if your Mom wasn't better in a week, they'd consider treatment a failure.

I was still getting blood transfusions 3+ months post ATG, and I saw my most significant improvement 7-9 months post-ATG. 2+ years later, although I still have lower than normal blood counts, my condition is stable and I have my life back. I'm convinced my patient persistent doctors, who have decades of expertise in aplastic anemia and did not give up on me, saved my life.

I am very sorry to hear what you and your Mom are going through. I am very sorry to say this, but from what you have written, I fear Baptist Health in Jacksonville, Florida has no business treating severe aplastic anemia patients. I hope I am wrong, but the things you say lead to believe they either don't know what they are doing or are lying to you.

I know these are strong controversial words, but a fury has built up inside me hearing of others with my blood disorder suffer at the hands of physicians who are ignorant of the proper way to treat it.

I would urge you to contact Dr. Neil Young's office at the National Institutes of Health. Your mother may be too sick at the moment to make it to their offices in Maryland, but perhaps they could consult with current her physicians as to her further treatment and supportive care. I believe this would be the best contact person:

Olga Rios
olga.rios@nih.hhs.gov
301-496-4462

Here is a recent statement by Dr. Neil Young, the great man who pioneered the ATG treatment your Mom and I received. This treatment, when administered correctly, when the patient is supported diligently for several months post-ATG, has saved thousands of lives. Note at the end of the video that he urges patients to seek treatment from a center experienced in treating aplastic anemia as soon as possible:

http://www.youtube.com/watch?v=02rvFOFYOVw

Another wonderful resource is the Aplastic Anemia & MDS Foundation (AAMDS). Leigh Clark and Martha Crews are great contacts there, and they have a wealth of information online about fighting Aplastic Anemia.

clark@aamds.org
crews@aamds.org
http://www.aamds.org/
(301) 279-7202 x103

I really hope I am wrong to speak so harshly of your Mom's hospital, but I wanted to convey a sense of urgency here, that there are experienced professionals out there who can help you navigate the medical system to ensure your mother gets the treatment she deserves.

Beyond all this, remember not to blame yourself for mistakes made by doctors. You were put in a position where you had to trust your Mom's current physicians. You personally have made no mistakes here, and the simple fact that you are on this forum asking these questions is a testament to your care and love for your Mother.

[KMac]

Leslie,

Here is a post from an older gentleman speaking highly of his aplastic anemia treatment with a Dr. Mamus in Sarasota, Florida:

http://www.youtube.com/watch?v=7_Q9S9jQ3JI

...I know nothing more about this particular Dr. and treatment center, but perhaps AAMDS would. I see you said you are familiar with them, so you may already have that contact information.

Also, as to your question about whether the days immediately following ATG have the lowest counts, I would say yes. But in addition, the very low counts can go on for weeks afterwards. And yes, absolutely it can take several weeks to see improvement. My platelets kept falling to very life-threatening levels up to two weeks post-ATG, and I kept needing platelet transfusions for two months after that. (At last count, my platelets were low-normal at 152, coming up on 2 years since my last transfusion). I have heard the same for many other patients.

Has your hospital discussed serum sickness post-ATG with you? Hopefully steroids will stop that, but I had quite a bad case about 10 days post-ATG after my steroids were reduced. Re-introduction of massive doses of steroids kept the serum sickness in check for me.

[Leslie850]

Thank you both so much. So incredibly helpful. I appreciate it more than you can know.

[Karenish]

I took 10 months before i saw any significant improvement after having rabbit. The first few days to take their toll and mummy is quite a bit older than me (i was 50 on diagnosis), lots of rest, plenty of water, eat well and just let the body do its stuff. She will need to keep her stress levels down if at all possible. bless her. xxx