Ratgam?

[Lamilu]

Hi there. My mom just had her second round of ATG almost a month ago now. The last one she had was Horse not even a year ago and this time they used Ratgam. I guess she was the first patient they have tried this on here in Alberta maybe even Canada not sure. She had alot of bad side effects from the horse although they seemed inexperienced and never gave her all the premeds she had this time around like benadryl, gravol and Tylenol. This time she did much better with the side effects. Just wondering if anyone else has tried the Ratgam and if so how did it go and what results did you see.

I'm not sure where my mom will go from here. She turns 70 in in December and she now weigh's about 100lbs. Not much to her. I'm not sure how much more of this she can take. When she gets her transfusions of hemo and Platelets she lasts about 1-2 weeks and then will get a transfusion when her hemo is at 8 and her platelets at 10. She seems to get at times around 13-14 with her platelets and they will hold out and then eventually come back down.

When she left the hospital after having her Ratgam for some reason they sent her home with her platelets at 5. She ended up back in the hospital with what they said was a tear around one the discs in her back and it was bleeding. So she spent another almost two weeks in hospital for that. They insisted that this had nothing to do with either the Ratgam or her Platelets being at 5 but she was back in the hospital in extreme back pain by ambulance within 3 days of being released. this is why I am looking for more feedback on this. I KNOW this did not just happen for no reason at all. Obviously I want my Mom to get the best care and with AA being so rare it is super hard. i just don't think the doctors know enough about what they are doing. It scares me. They had 5 different dx before this back tear. They just didn't know what was wrong. I'm not convinced they do now. they just said that sometimes this happens when people have lower than normal counts. You can get tears or bruises on the "inside" just the same as bruises on the outside. She is home and with much rest is little by little getting better. I really hope that this tear isn't something she will always have to keep dealing with as it was hard to see her in so much pain. No change in the counts...yet.

Any feedback and/or prayers would be much appreciated!!!

Susanne (Mom has AA 69yrs)

[Lisa V]

Atgam is a brand name for ATG (horse), so Ratgam is apparently just another name for rabbit ATG. There are a number of people here who have had that, although I've never heard it called by that name.

[Lamilu]

Thanks Lisa for your reply. I think maybe my Mom may have just gotten mixed up. I cant see her being the FIRST one here in Alberta to get Rabbit but maybe. I suppose AA IS really rare after all. The Doctor/nurses kept calling it Ratgam so it confused her. She thought they meant from a Rat rather than rabbit or Horse. She also said that a doctor was telling her that they have Beaver ATG now? Seriously sounds odd but who knows. I had planned on talking with her about this today but my dad called and she has been admitted back into the hospital. The doctors say she is bleeding in her back again. She is in very much pain. She was one of those women that no one would ever believe her age because she was so active and so young looking. This has really kicked her butt. Both physically and spiritually.

So if she gets through this and she doesn't see a change in her counts in 5 months from the ATG she got a month ago then what? What else can they do for her at her age? this was her second time around and she cant have a transplant. She has heart and thyroid problems too. This is SO frustrating.

[Lisa V]

Originally Posted by Lamilu

So if she gets through this and she doesn't see a change in her counts in 5 months from the ATG she got a month ago then what? What else can they do for her at her age? this was her second time around and she cant have a transplant. She has heart and thyroid problems too. This is SO frustrating.

That's a very good question, Susanne. I wish I had a very good answer. As you point out, there are other animal ATGs, usually reserved for cases where horse and rabbit haven't worked. They're not used very often, though, and I don't know how available they are. I remember one young woman on the Aplastic Central forum several years ago saying she'd had 7 rounds of ATG: 2 horse, 2 rabbit, 2 skunk and finally one goat. None of them worked until she had the goat, and that did the trick! I've never heard a similar story from anyone else, though (and I've never heard of beaver before this). It seems like most doctors don't want to keep trying after 2 failed ATGs.

There are also other possible courses of treatment: either high dose or low dose cytoxan, campath, rituxan, androgens, etc. Some of them are still somewhat experimental and would require being in a clinical trial. I don't think any of them has the same kind of track record as ATG, which is why they generally do that first. The Catch-22 there is that once you've had ATG, it may diminish the chances of success for some of the other options. I'm pretty sure they won't do hi-cy if you've had ATG, and I'm not sure that would be available in Canada anyway. I believe the only place that does that is Johns Hopkins. I do know someone who has been taking low-dose cytoxan (in pill form) after 2 ATGs, though.

I've also heard from others who have taken a more holistic/naturalistic approach, either after bad experiences with ATG or in lieu of that. Some are hanging on with low counts, while others didn't do so well, but at least one made what sounds like a full recovery. It's hard to know, because everybody's AA is a bit different from the next person's, and if there are other medical conditions too, that complicates things.

At any rate, these are all things to talk to her doctor about. If they don't have a Plan B, you might want to get a second opinion, but for now, let's just hope the rabbit does what it's supposed to!

[Lamilu]

Thanks for replying Lisa. Yes this still may work. that is what we are praying for. How long before she should see some movement in her counts? I have read 3 months and I have read 6 months to a year even. I also told Mom about the article I found on here that said they are keeping people on the Cyclosporine for a year now and then tapering as I know her doctor tapered her after 6 months after the first round of ATG. her counts WERE starting to go up at that point but then she relapsed. She was also told when she had the BMB that her marrow was completely empty. Does that mean a worse prognosis for her? or does that not make a difference ?

I never did get a reply about the bleeding in the body so I'm wondering how common that is. She is being released from the hospital again today and being told to stay put in bed as she is bleeding in her back. The Doctors told her she needs to rest to heal the tear and stop the bleeding. Hopefully it will be ok this time.

This has been really hard on my dad too. Just before my mom got sick he was offered a job in a different city 2 weeks in a week out with really great pay so he took it...now he is ready to loose it because he has taken so much time off to help my mom and there is no end in sight. she cant get around by herself. This is so awful. No one deserves this after working so hard all there lives!

Anyways, thank you for replies. It does help to know there are people who know exactly how we feel and what we are going through. And to ask questions if needed. I guess I feel more helpful if I know what I am talking about with the doctors. So thanks!

Susanne