Husband's 1st day ATG

[SherryM]

Hi everyone...Jim started the ATG at 11:00 this AM anda little while ago he started extreme shaking and they had to give him some dilaudid. I told him I've heard of this side effect often from this board....how long does this phase usually last? I'm sure it's different for everyone. But is it usually only the first day? No fever, and heart is ok. They slowed the drip to 1/2 so he'll be on it longer but they don't want another heart attack and he was doing fine till just about 1/2 hr. ago. at 5:00...about 6 hours in. He said they called it the rigors?? but he pronounced it RYgores. Does this make sense?

Bless you all and thank you for being there
Sherry

[flyguy]

Hi Sherry,
So sorry your husband is undergoing ATG and having side effects. I am 70 and underwent it 2 years ago and had the RYgors, as my doc called it too. They can adjust the dosage of ATG and also the meds for side effects depending on his reaction. I also had 104 fevers about 3 times. The ATG is very harsh to kill or suppress the immune system but your hospital should be used to watching for serious side effects. Mine was done in an organ transplant unit and the staff was first rate. Even so, it took me 12 days to get the 4 infusions my doc ordered. Are they taking his vital signs every 15minutes? Mine were, and it keeps the staff on top of problems developing. Good luck! Let us know how he does,
Ron
MAA diagnosed 2008

[Lisa V]

Chills, fever, shaking, aches and general flu-like symptoms are pretty standard for the first infusion. They just gave Ken Tylenol for it. He was already getting Solumedrol (IV prednisone) and had been given Benedryl beforehand, so that's about all they can do until it passes, which should be within a few hours.

Sherry, you can be glad your husband's medical team has experience with ATG and recognizes the rigors for what they are. Sounds like he's in good hands. Our local hospital doesn't do that many ATGs, and the on-call physician on his second treatment mistook the fever and shakes for symptoms of infection and gave him antibiotics, which made him feel even worse (C. dificile) until they figured out their mistake. This only happened because they started his infusions late at night after his regular hem/onc and I had both gone home (they'd told me they were going to wait until the next morning). Had either of us been there, we could have told them this was a normal reaction, and if we ever have to do it again, I'm going to make sure that everybody involved knows the drill!

It really does make a difference how much experience your team has. I doubt this sort of thing would ever happen at a center like Moffitt. You're lucky to be within traveling distance of someone like Dr. List.

[SherryM]

Hi Lisa and Ron...I thought I had set my post to email me when there was a reply..so I'm pleasantly surprized to read your responses. Today they have had to discontinue the treatment...will wait 24 hours to re-evaluate before resuming due to elevated liver enzymes. Hadn't read about this possibility before. Last time it was cardiac enzymes.

Ron..yikes! 12 days for 4 infusions. Even one extra day is causing big problems for us... He did spike a 103 temp last night but it broke later on. And Lisa....they did give him antibiotics just in case plus they loaded him up with all the premeds, benedryl etc. before they decided to postpone the treatment so he sounded very strange this AM. His brother tells me he's just sleepy...didn't sleep well last night.

I guess they gave him ambien...wouldn't all these other meds drive up liver enzymes as well?? or would that take longer continued use? My brother in law says they are checking vitals frequently, gave him a chest xray for some reason, and he's getting top notch treatment. They did the infusion yesterday at 50% flow so it was from 11:00 till 11:00 at night. Hopefully he'll get rested today and be able to continue tomorrow.

You guys are such a lifeline!!
Sherry

[Neil Cuadra]

Originally Posted by SherryM

I thought I had set my post to email me when there was a reply...

Here's a forum tip:

If you aren't being notified of replies when you want to be, read these two FAQ sections:

• How do I subscribe to a thread?
  
  
• How do I set my default Notification Type and Automatic Subscription option?

[Greg H]

Hey Sherry!

I had rigors with Campath (a different immunosuppressant drug). Everyone is different and it sounds like your husband may have more health issues than me. But, for me, the rigors looked a lot worse than they were, and so were harder on my wife than on me.

I think they gave me demerol to control the shakes. I think the body uses a lot of energy when its shaking with the rigors, so I fell asleep once they subsided. I was also very cold while shaking and found that warm blankets were very comforting.

Good luck to you and your husband.

Greg

[SherryM]

Hi Greg
thanks for responding. Jim's never had any medical problems before the onset of MDS...and the heart attack happened during the 1st round but he's been fine since then (other than getting transfusions every 2 weeks).

Today apparently they gave him the premeds this AM before the doc decided to hold off on the ATG. So he had benedryl, vancomycin (and I'm not understanding why they gave him the antibiotic unless something showed in his labs as the fever broke and he's felt ok all day). There is also prednisone in the mix which has caused his blood sugar to rise and now he's also getting insulin. Supposedly they'll check his liver enzymes tomorrow and decide.

I'm a bit confused as to why they have to load him up with so many meds when he isn't even doing the ATG today. I've never been a "whatever the doctor says is ok" type of person. I've had to advocate for my daughter who is extremely involved and I've seen how many mistakes can be made with meds. My hubby is the opposite.....he's probably the most compliant patient ever. I guess it's a good thing I'm not over there lol.

Does anyone know about the elevated liver enzymes as a side effect of ATG? I did a search but couln't find very much at all.
Because I'm diabetic I know about prednisone raising blood sugar
...is that a common side effect with this treatment as well?

Good grief...I hope tomorow is a better day for us all!
Thanks to everyone again.
Sherry

[SherryM]

My husband Jim has been delayed a second day today with resuming the ATG. His liver enzymes are still up....tho trending down. He asked today if he really needed to be on vancomycin when he didn't have an infection to begin with and they agreed he did not. He also will not be on all the benedryl, prednisone, etc. premeds they gave him yesterday before determining he wouldn't get the ATG. Personally I think they screwed up and contributed to the raised liver enzymes but of course I'm not a doctor.

Every extra day he is gone is costing us alot of $ and stress at home.And he's bored as can be.

BUT..... we don't want a damaged liver on top of everything else.
Sherry

[Hopeful]

Hi Sherry,

I thought I'd share my ATG liver numbers for comparison. They jumped pretty high on day 4 of the ATG.

-------AST...Bili...ALT
ATG1
ATG2...26...1.4...31
ATG3...20...1.2...26
ATG4...95...1.5...101
day5...58...1.4...118 (no ATG, just prednisone)
day6...60...1.6...128 (no ATG, just prednisone)
...

It took another 8 days for my ALT to return to normal and a lot longer for my bilirubin.

Also, prednisone shouldn't be stopped cold turkey. You must do a taper! It would be better to stay on it then to start and stop.