ATG/cyclosporine

[edithr]

So my 15 year old son, who has severe AA, is set to go in for Tx the end of March. What can he expect as far as how he'll feel? They gave us the list of side effects, but can someone who's had this treatment give me the lowdown? When he has the IV, how sick will he be? Does ANYBODY leave the hospital the day it's finished, or is it typical to stay a day or two longer?

Then he gets home and starts the pills and maybe shots. Will he feel good? Will he go to school, play with his friends, do the normal stuff teenagers do?

And what is serum sickness like?

And, when thats done (if he even gets it), will he THEN feel good? I hate the thought of him feeling crappy for months.

I realize every person is different, but I'm hoping somebody could tell me what is typical. I really appreciate your help with this.

Thank you so much.

[mscrzy1]

I'm not the best of people to answer all your questions because it was a long time ago for me and I seem to have selective memories of it all. My mom reminds me of a lot of things that I went through. She said that the first day of my ATG was a little rough for me with chills and fever and such. After that, I seemed to tolerate the ATG ok. I don't remember if I was released the day after day 5 of my ATG or not. Sorry, I can't help you there. My mom said that the first few days when we got to the apartment we rented, I was sick with headaches and nausia. I do remember having a hard time taking the cyclosporine because it smelled so bad it usually made me throw up before I could even get it in my mouth. I spent a lot of time in the bedroom in the dark sleeping because of headaches. I remember just a general feeling of yuck for quite a while. It wasn't bad enough to have me down for the count. Just a general weird yucky feeling. When we tried to take me off the steroid, I had intense pain in my knees. The pain was so bad, I got taken to the ER a few times for pain shots. I remember that VERY well. I would say that immediately after his ATG, he won't be playing with is friends like a regular teenager. I can't give you a timeline of when exactly he'll feel well enough to do that either. Sorry. I was all so long ago for me. I know there are others on here who can help you a little more and I'm sure you'll hear from them soon. Everyone is definitely different in their experiences. From what I understand, the younger the patient, the better they tolerate the drugs, though, if that makes you feel any better. I hope it goes smoothly and he's the typical teenage boy you would expect to see soon.

[edithr]

Hi Angie.

Thanks for sharing. You said the cyclosporine smelled bad. I've been wondering why people called it "skunk pills"! That bad, eh?

[mscrzy1]

LOL! Yes! They smell like skunk. My mom thought I was crazy until I made her take a whiff.

[mscrzy1]

I also forgot to mention that when I was dx with AA, I had dropped my classes for the rest of that semester in college (spring semester). I started back to classes in the following fall semester after having had my ATG in March. I thought that might help you with a bit of a timeline in how he may be feeling. So, I had to have been feeling pretty well to have started back to classes in August after having had ATG in March. I was still transfusion dependant, but was feeling better sickwise from the ATG by then. Hope that helps!

[bochs4]

My brother just had ATG in December and alot of things that Angie said he also had. His knees were very sore and his teeth and gums really botherd him. He feels alot better now that some time has passed. May god be with you in this difficult time

[Karenish]

I have posted a reply on this on another thread. But have to agree that cyclosmelly as we call it in this house stinks! I normally take it with some blackcurrant juice. However, if it works I think its a small price to pay.
I have reduced my steroids by another 50 percent today and for the next 5 days when they will be reduced yet again. These have also given me no side effects, they have not made me hungry nor have they made me put on any weight!

[Lisa V]

Different brands of cyclosporine seem to have different degrees of stinkiness. Ken's been using Gengraf, which is not too bad. He sometimes cuts open the packets and lets them air out a bit before taking them, which he says helps. We had briefly switched to a generic brand to try to save a few bucks, but he couldn't hack the smell at all!

[kellym]

My daughter had rabbit alg just over a month ago
We are in the uk so it may be different here, but we were in hospital for a month. She had the infusion over 5 days, and had all sorts of meds, she was given Antibiotics, predisone, aciclovir, puriton and itraconazole. They seemed to treat her for everything just in case. She had some serum sickness which was a rash, and achy joints but they were so good at pain relief that she hardly felt it, they monitored her constantly. She did get one Infection in her Hickman line but that cleared up after 5/6 days
All in all it was much easier on her than I thought it would be and she enjoyed all the fuss!
We are back home now on cyclosporine and itraconazole and she is absolutely fine, apart from being tired at times and her counts are lower than before but I'd been told to expect that.
We are now praying and waiting for the counts to get moving
Good luck with your son, the younger ones seem to cope a lot better!

[Karenish]

~Although I am much older than your daughter (50) we must have been receiving the treatment at the same time in the UK, and they reckon this AA is rare!!! I am now at home also, on cyclosporin, rinitidine, aciclovar, predisone plus the mouthwashes! I too had rabbit!
My team also covered absolutely every eventuality and I only ended up having one fever on the first night, and a couple of rashes after, all successfully dealt with by the wonderful piriton ( i love the stuff). I too am waiting for counts to rise, my plates are only at 19 as of yesterday, so they want me in tomorrow to check if they are falling which may mean a top up:0(
But hey I have been told that it can take months for them to climb, unfortunately being a typical clinician myself (OT) I am expecting miracles on a daily basis! lol. Glad to hear your little one is doing so well, and truly hope she goes into full remission xxxxx

[Ronnie2007]

You may take together with apple juice. it is better taste!!!

[kellym]

Hi karenish, I know what you mean about the counts I'm impatient for them get moving too!
It's been a month since ATg and ellas had 5 platelet transfusions and 2 blood her counts seem to worse than ever, but they say this is normal.
The other thing is when her platelets were low shed get the little red dots and which now she doesn't even when her plts were at 9 and when her hb is as low as 5.6 she's even not pale before ATg shed look awful..I don't understand why this has happened.
Every blood count is a disappointment at the moment.. But I keep slowly slowly and it will get there! ( touch wood!)
It's interesting you've just had the ATg too at the same time and that you live here in the uk, do you know why they don't use the horse ? Ella was treated at the royal marsden
I hope your counts go up for you.. Let me know
Xxx

[pvinod]

HI edithr ,

hope your son is fine.

have you gone thru ATG treatment? was it finish? how that was? what is the lymphocytes counts on day1 of ATG?

[edithr]

Hi Pvinod,

Yup, he got done with 4 days of tx on Tuesday. I don't know what his lymphocyte count was, a few days before tx it was 1.06. Does that mean anything? I'll be sure to ask the count on Monday when he sees the doc.