I had ATG last week

[Lbrown]

I was at Sunnybrook last week for horse ATG. I had allergy tests first and was not allergic. Had the serum over 4 days with fairly mild reactions. I was also taking prednisone. Had some fever, headaches, hives and fast heartbeat.

I got out on Saturday and drove back to Ottawa, a 4 hr drive. Got dehydrated and woke up with a fever of 39.3. I was concerned my WBC could be crashing so I went to emergency on Sun morning. Spent a couple days in hospital, fever came and went but just seems to be part of the serum reaction. My WBC had gone up to 2.8 and my neutrophil count was 1.3. Platelets were down in the 60,000 range but seemed to be holding, no good measurement on HGB yet. I think that will be the slowest to recover.

I'm home now and finally had a good night's sleep after about 10 days. Keeping on top of symptoms with benadryl or tylenol but feeling ok.

I'm taking it easy and making sure to drink lots of water.

Anyone have any similar experiences? I found I didn't really know what to expect after I got out of hospital. Especially where counts are concerned. The reaction to the serum is like a bad flu it seems, as your immune system kicks into gear to fight the serum.

Thanks,
Deb

[Susan L]

Hi - I had ATG treatment at the NIH 7 yrs ago. It was like you are experiencing, bad flu like symptoms. I had what is called serum sickness after like 2 weeks. It was horrible (sorry) my legs swelled, and turned purple and couldn't walk on them. I also took Cyclosporin and Prednisone, benedryl, lasix and pain pills. Are you being followed by someone who is familiar with the treatment at home? Blood tests were done weekly. The treatment is hard but works. I wish you the best and let me know how you do.

[Lbrown]

How long did your ATG treatments go on for? I had 4 treatments over 4 days. Today I am feeling much better, thanks to finally getting out of hospital and having a good night's sleep.

My knees feel swollen, I hope my legs don't get that bad. But it sounds like things could still get worse.

Yes I am being followed close to home as well.

Deb

[Lbrown]

Crazy tachycardia this morning and a slight fever. It's amazing how fast these things can come on and also how fast they can go away.

[Susan L]

Hi - My treatment went over 4 days. The symptoms do come on fast and leave fast also. Do not hesitate to let them know. Everyone said I had a very good response to the ATG. Benedryl helped with symptoms, and just getting over the flulike stuff and you wil be fine. Let me know how you are doing. What is your disease?

[Lbrown]

Hi Susan,

It helps to know others have been through a similar experience.

I was diagnosed with pure red cell aplasia in Jan 2009. I was treated with cyclosporine for 7 months. I also had a low WBC (below 2) and she could never explain that. As soon as I stopped cyclo, the transfusion-dependence returned. In Feb I tried IVIG for PRCA, which made me worse. When she suggested prednisone and cytoxan as the next treatment for PRCA, I started to wonder why I had PRCA and not aplastic anemia.

I went for a 2nd opinion to Dr Wells at Sunnybrook who felt I was more leaning towards mild-moderate aplastic anemia because I also had a low WBC AND low platelets (the low platelets was a surprise). He was sure if I waited long enough it would technically be aplastic anemia. Since he seemed more knowledgeable and could answer all our questions, we decided to do the ATG.

I had to get abx for a UTI today. Hopefully tonight I will get a good night's sleep - I was up a lot last night, and the prednisone does not help. I am feeling better than I was this morning, but I still feel pretty unstable, as in I wouldnt want to make any plans to do anything. Thank goodness I also have next week off work. Also thank goodness I've had no nausea.

Deb

[Lbrown]

Lots of fever since 2am. I don't ever remember having the flu this bad. Is this normal?

[Lbrown]

Feeling a little better this morning. Thank goodness. I think there's light at the end of the tunnel. This is day 12.

[Susan L]

Hi - Sorry to hear you are having the symptoms. It does come with the treatment - you will feel better. It is wise to be off another week from work. I remember I stayed off for a few weeks, then did light duty for awhile. Keep taking your meds. The fevers do come with it, along with the plain old yucky feeling. Have faith you will get stronger. The ATG worked really good for me. Do you take benedryl? It might also help you to sleep. Take care. Keep in touch.

[Lbrown]

I'm taking benadryl, tylenol, and tapering off prednisone (down to 35mg today). The fevers are so high, around 103F, but they do go away during the day. I also have taken a couple of gravol on 2 occasions when my stomach was upset.

Today I feel like I was hit by a bus. Every muscle, bone and joint in my body hurts.

Deb

[Susan L]

Deb - I am so sorry for the effects you are having. Hang in there, let your doctor know about all of the symptoms. I do remember the body hurting like you discribe. It does work out thou. I am praying that things work for you.

[Lbrown]

Feeling a bit better today. Going to go have some blood tests later. This has been SO NOT FUN! It's day 14 so maybe I'll keep improving now.

Deb

[Susan L]

Hi - I know its not fun - but maybe the results will be well worth it!! Let me know what your test results are. You know when you start reducing the Prednisone you also feel like a bad flu and achy and such. Hopefully you will be feeling better soon. Take care

[Lbrown]

Thanks Susan. Today I managed to get a nice bath, then my husband took me to get the blood tests at the hospital. Moving slowly but at least moving. Managed to walk up 4 flights of stairs in the parking garage. I was pretty much out of breath by then, so I think my counts are probably low. I'm supposed to go back to work next Mon and I have a transfusion booked for Sat, but I figured if I let it get too low, I won't be fit for going to work. I will get my results tomorrow.

Yeah I read that about prednisone too. Everything seems to make all the same symptoms worse. I hate being on prednisone, it keeps me awake, but now that I'm tapering I'm sleeping a bit better - yay.

I am hoping to be well enough in a day or so to go see my horse, I haven't been in over 2 weeks. My left hip is hurting too much at the moment to ride, but my daughter said she could ride him, plus do most of the work.

[Susan L]

Hi - You walked up 4 flights of stairs! Fantastic - I can't do that now with this Dacogen treatment. I get so out of breath - but that is cause the counts go down after each treatment. Prednisone is so nasty but it really does a great job on diseases. You have a horse - how neat. I love horses. Hope your counts go up so you will start feeling better. If you are able to take your time going back to work, don't push it too much. I did and still do and it pays a toll on me alot, by wearing myself down. Let me know your counts and hope you have a great day.

[Lbrown]

My counts as of yesterday:

HGB 85 WBC 0.8 Retics 48 Platelets 24k

My retics are finally normal again. How worried should I be about my WBC and platelets? I was told those could get really low, but I also think they get produced much faster than RBCs.

My dr here is on holiday, but her secretary is going to show my results to another dr.

I had another fever again around 1am, but it is pretty well controlled with tylenol. I am also eating & drinking ok. Just wish I was sleeping better.

Thanks,
Deb

[Susan L]

Hi - 8.5 hgb is low but ok, wbc .5 is very low, did you say you are on antibiotics? They will go up- I was put on Neupogen and Procrit for my WBC and RBC's. I am sure the doctor will call and give you some suggestions. Are you having your transfusion on saturday? Don't mean to be so nosey, just concerned as a fellow patient. Try to get some rest and let me know if they put you on something in addition. Record those fevers you get, that is the only way they can tell if you have an infection when the WBC's are so low. Infection is the biggest problem. Take care.

[Lbrown]

I just finished the last antibiotic this morning. I haven't heard anything from any dr. I feel like I'm all on my own here. I do have a transfusion on Sat, will get another blood test on Thurs probably. My WBC has tended to fluctuate, it used to be around 1.5. My HGB has actually gone up 3 points, which is a first.

[Susan L]

Is your doctor far from where you live? Is Sunnybrook far from you? If so, you should have a local hematologist or oncologist looking out for you. I had my original treatment at NIH and I live in Ga. I had a local oncologist that basically just did cbc's on me. When I recently relapsed he didn't know what to do with me (he said there wasnt any other treatment available for me) so I went on the internet and knew better - that is how I found my current oncologist and I just love the practice. They wanted to see me the day I contacted them. Cheer up - things will get better, but I do fully believe we have to be proactive in our treatments. I would let your local doctor know how you are feeling. If you dont have a local doctor I would get one to help you out. Where do you live?

[Lbrown]

I'm in Ottawa which is 4 hours away from Sunnybrook. My local hematologist in Ottawa is on vacation and will be back Tuesday. I have all kinds of standing orders for tests, so getting the test isn't a problem. I also think the prednisone withdrawal is getting to me. Last night the fever stayed away, but I was throwing up. Hopefully tomorrow will be a better day.

[Hopeful]

Are you sure that you are not tapering prednisone too soon or too quickly? I was on the full dose for two weeks following my last day of ATG, as serum sickness can extend that long. As miserable as prednisone is, it does help prevent serum sickness. All total, I was on prednisone for about a month, including the taper.

Typically, prednisone will cause a false rise in your WBC, so it is concerning that your WBC remains low. Be very careful! Your platelets look great though, from my perspective. It took me much longer to get transfusion free.

[Lbrown]

I am back in hospital with a c.diff infection. I spent 24 hrs in emergency, and finally got a room. Feeling a lot better. And they are tapering the prednisone slower than what I was told.

[Susan L]

Hi - Sorry you are in the hospital, but glad someone is looking in on you. Slowing the Prednisone I bet is going to make you feel better. It cant be tapered too fast. I have not been feeling good. My legs, and ankles are killing me. Do not know what this is all about, but its getting really old. Take care

[Ryan Jay]

OMG!

I am going in for ATG on Monday. Can you guys give me any pointers about what to bring/expect?

Ryan

[susansr]

Originally Posted by Ryan Jay

OMG!

I am going in for ATG on Monday. Can you guys give me any pointers about what to bring/expect?

Ryan

Ryan, when I had ATG in Feb, I was really sick just 1st night (shakes, vomit, etc) but nurses were right there to help, giving meds instantly to combat these neg reactions. So each following treatment they gave the meds to prevent same reactions. Worked like a charm.

There is lots of down time so be sure to bring things to keep your mind occupied. If you want more info, leave me private message.