lot's of questions

[James D]

I was first told I had Aplastic Anemia Sept.12th 2006. My platelets are 19000 my rbc is 2.0. I start ATG injections Monday April 2nd. What should I expect?

[Andrea Pecor]

James,

I've had a fair amount of experience with ATG but have never heard of it being given as an injection. Generally, it's an intraveneous drip given for several hours a day over a period of several days (the standard is something like 4-6 hours per day for 4 days) Experiences vary tremendously from patient to patient. Some of the side effects can be headache, chills & fever, itchy rash. Most of these can be controlled with other medications. ATG protocol is usually followed by some ongoing dosage of Cyclosporine and/or Prednisone. Some patients have no trouble during the infusions but experience what is called "serum sickness" which occurs a week or so after the ATG is finished. Serum sickness is an allergic reaction to the ATG. It's similar to the side effects I mentioned before and can usually be taken care of with Prednisone. Usually, the doctors will do some skin tests before they start the ATG to determine the potential for an allergic reaction. Your blood counts could go down during and after the ATG treatment. Most people who respond do so within 6-9 months. Some patients require a second round of the ATG before they see a response.

I wish you all the best through the ATG treatment and hope you have an easy time and a positive response. Let us know how you are doing and if we can answer any more questions for you.

best,
Andrea

Originally Posted by James D

I was first told I had Aplastic Anemia Sept.12th 2006. My platelets are 19000 my rbc is 2.0. I start ATG injections Monday April 2nd. What should I expect?

[Lisa V]

James, as Andrea says, different people react differently, but don't be surprised if after the first infusion you develop severe flu-like symptoms, i.e. chills, fever, body aches. This seems to be pretty standard, and should pass within a few hours. With any luck it will be smooth sailing after that, as it was for my husband, but you just never know.

The cyclosporine and prednisone given as follow-up each have their own set of possible side effects, and again, it varies from person to person. Cyclosporine can cause hand tremors, excess hair growth, pains in the feet, among other things. It can also affect blood pressure and kidney function, so these things must be monitored, and the dose adjusted if need be. Prednisone generally gives the user a puffy-faced look while they're taking it, which disappears once it is discontinued. It can also cause mood and appetite changes, thrush (a yeast infection of the mouth) and less commonly skin rash.

How long you will have to take these things depends on what protocol your doctor is following, and also how you respond, but generally prednisone is given for about a month and cyclosporine for about 6 months. Some people do have to stay on cyclosporine indefinitely, and will relapse once the medication is tapered off. My husband is one of those, but hopefully you will not be.

At some point while they are waiting for your counts to rise you may be given growth factors, such as Neupogen (G-CSF) for white cell production or Procrit (EPO) for red cells. This is an individual thing, though. Not everybody gets them or responds to them, so it's up to your doctor whether he/she thinks that is appropriate.

It is unlikely that you will see an immediate response, but it does happen. Usually people continue to be transfusion-dependant for a while. How long to wait for a response is a hotly-debated topic. It is usually advised to give it at least 6 months before drawing any conclusions, but some doctors like to move in more quickly. You should also be aware that a response may not mean a return to full normal counts. That is what you hope for, of course, but the measure of "success" is if you can maintain counts above transfusion level. The body has a remarkable ability to adjust to lower than normal counts, and it is entirely possible to live a normal life as long as they don't drop dangerously low.

If you have any specific questions, feel free to ask.

[James D]

I went through the treatments got the chills fever just one night. After that I did ok until my second day home. I was awaken with both my eyes swelled shut, had a bad rash and my airway was closing up. I got back to the hospital and everything is ok now except for my mental state. The doctors said It may take a while what do you think? With out any insurance it makes it hard. To chat with someone who has had the same treatments seems to help. Thanks Lisa

[Lisa V]

That sounds pretty scary, James! What did they say caused the swelling and rash? It sounds like some kind of allergic reaction. Did they give you Benadryl? I hope that's the last you see of that kind of thing!

I know what you mean about mental state. It really turns your world upside down, doesn't it? How are you managing all this without insurance? The treatments, transfusions and medications are all very expensive, and if you can't work then it's just that much worse. We at least have some kind of insurance, but when my husband was healthy he didn't think it was important to have drug coverage and now we're stuck and can't get it, so that's been very difficult. We were able to get some help with the medications through Needymeds.com. You might look into that. I just hope he never needs a transplant, I don't know how we'd manage that.

The doctors are right that it may take a while. Waiting is the hardest part, and it's something we all know well. Some people start to respond within the first month, but I've heard of others that take up to a year or so. Usually they say to wait about 6 months, and if you don't see ANY change at all, then it's time to move on to Plan B. Ken didn't start to improve the first time until about 10 weeks after the ATG. The second time it took only 5 weeks, but he had already been on cyclosporine beforehand, so that may have speeded it up. Everyone's different though.

Hang in there!