Newly Diagnosed ITP-Need Info on IVIg side effects

I was admitted to hospital on Tuesday night with platelets of 3000. I have responded to 2 units of fresh frozen plasma and 2 infusions of IVIg and steroids. My platelets are now at 42,000. Diagnosis is ITP.
Here's the thing...I FEEL HORRIBLE and have FELT horrible ever since they started the infusions of IVIg. I have a CONSTANT headache (head's been scanned, no bleeds) I feel like I couldn't fight my way out of a wet paper bag...so fatigued and now I'm getting some chest pain/pressure and lower back pain intermittently...in addition to feeling like I'm going to just jump out of my skin...jittery and irritable. The hospital said maybe its the meds, but just wondered if anyone else experienced similar feelings.

Yes, it's the meds. Prednisone will cause the jitters and irritability and IVIG will cause a headache. Most people say the treatments are worse than the illness. It will get better.

Headaches can be caused by the infusion being to quick - I had that once when the nurses shift was over but I wasn't so she "turned it up" Did they weigh you before because that is how the rate of flow is decided? This is just my take on the matter. Christine

Thanks so much for your responses. I didn't feel good when I went to hospital. Headache had been there for days as had a 3 day nose bleed...but Yes the rate of infusion (when they tried to increase) did seem to make everything worse...but even when they slowed it I would have "spells" of worsening symptoms every 45 mins - 1 hour. So it took forever to get it all in; especially yesterday. I've been discharged to home now and I still feel so bad. They switched me from Prednisone (first day) to Decadron today thinking I might tolerate it better, but so far I think I actually feel worse. I haven't slept more than 2 hours since Tuesday so maybe that's part of the problem too. They even gave me Ambien last night I would still wake up with headache and cold sweats and jitters. I don't know...I'm just overwhelmed, shocked and feel like crap. I wouldn't think just the platelet problem itself would cause so many symptoms though I had pretty significant fatigue the past 3 weeks prior to diagnosis. Sorry for whining, but I didn't have time to digest the ITP let alone all the problems from the treatments. Thanks again!!

Decadron can be much worse in terms of side effects, but it ends faster since it's only 4 days instead of months like Prednisone can be. Be prepared for feeling like you got hit by a truck for a few days after stopping the drug. It can be pretty nasty. I'm telling you now so you won't be wondering if it's the meds....yes, it is.

Things will get better. It's always a bit crazy at first, but you do adjust and life will be normal again.

How was the 3-day nosebleed treated? Did you have your nose packed? How could you function if your nose was bleeding that long?

The nosebleed was pretty slow thankfully. It would stop and start but my nose just stayed constantly stuffy and then when I couldn't stand it anymore I'd blow gently and end up starting the bleeding again. Much of it was posterior so it drained down my throat (I know...TMI...Yuck!) I tried every trick in the book thinking it was due to dry heat...I used saline rinses, saline sprays kept humidifier going non-stop. While I was finally becoming a bit worried about the nose bleeding, It wasn't until I saw my legs covered in petechia that I knew something bad was going on. Been a paramedic for 23 years so I knew it was a platelet problem and went to the ER.

Hi DT!

I just finished 2 rounds of IVIG, Thursday and Friday. No big deal, but my platelets were in the 20's. The worse part for me was the sitting still. I am hyper! LOL Anyway, the only side effect that I "think" I had was low grade headache. I still have one off and on today. Gone right now. Other than that nothing. I don't know if the IVIG worked or not yet. I will know on Wednesday.

I wish I could offer you a little something else but for me it was a nothing. I wish you the same! AND with great results! Keep me posted!

Jeffrey

...and now I have a headache and fever 100.5; achy and lightheaded. Probably flu fro being in the hospital last week...guess I better call and see if they want me to drag in there for blood work today anyway.

Hang in there! It will get better! Keep us posted!

jeffrey

Hi
My daughter was the same way headache that wouldn't go away hurt if she took her head off the pillow high temp aches and pains all over her body but after a week she was fine and back to herself .
Dawn

My ITP teen is now in remission, but she had horrible side effects the first time she had IVIG. (Headache so severe she was throwing up, saying it was the "worst in her life" even though she'd earlier had migraines. I thought she was having a head bleed, and she was readmitted to the hospital for CT and observation.) We were offered some tips to prevent the side effects. We followed them, and, sure enough, the other times she had IVIG were not bad at all. The tips were: hydrate well, before, during, and for at least two days after the IVIG infusion (good excuse for a Popsicle); benadryl and tylenol before, during, and after (tylenol for two days and benadryl for two days if you don't have to work). She had a shot of decadron at discharge after the IVIG the second time she had IVIG. The third time she had IVIG, they gave her three to five days of low dose decadron pills. (Decadron's awful, and to be avoided if you can, but this low dose gave her no problems. Decadron for some has seemed an effective treatment. For my daughter, it worked to prevent the IVIG side effects, but, as an ITP treatment alone, it caused problems. Others here have had some benefit from the decadron pulse treatment.) The hydration tip with the IVIG means you won't exactly sit still, since you will be passing a lot of urine. We just wheeled her IV pole to the bathroom each time, and learned to disconnect and reconnect the monitoring wires. As a paramedic, you'll be an ace at this in no time, but I will pray that your IVIG journey is temporary and that you'll soon be one of those in remission who just comes back to share tips with others.
Norma

Thanks for the IVIg tips Norma...if I ever need another infusion I'll be sure to hydrate better!

The last time my son had an IvIG he had a horrific headache and he would always run a temp. It was the meds. If you have to have one again, get them to slow your infusion rate. It seemed to help my son. If they pushed his too fast he would rigor. It would normally take him about a week before he would start feeling better.

When I was first diagnosed, I felt completely healthy. Not a single ache nor pain. Nothing but petechiae covering my body.

When we started the meds, it was an entirely different story. The prednisone made me feel jumpy and crazy. The antibiotics (for the h. pylori infection I had) made me feel nauseated. The pre-meds before IV treatments made me feel sleepy or like a zombie. For every medication I was on, I could run through the list of side effects and pick out at least 3 I was experiencing.

Initially, it was a rough couple of weeks but it got better.
And that was the biggest thing I took away from advice from this message board. Hang in there, it gets better.

I have had IVIG 2 times and got really sick felt like had the flu for days after. I'm in the hosp with symptoms like you were having a few days ago. Will have to have IVIG tomorrow if they do not go up.


Dru

I sure hope you feel better soon Dru. Will keep you in my prayers

Thanks so much. Things are looking better with count of 17k today and can go home from hospital. Yay!

Hey!

told you so! Glad to hear the good news! Stay in touch!

Jeffrey

I have had 5 different rounds with ivig in the past 16 years. The headaches just get worse for me. I do not understand why doctors and nurses haven't noticed that is DOES give headaches. I have seen it as a noted side effect in every article i have read about it. It is the worse kind of headache even thought possible. I had the nurse slow down the drip last time and it did me no good. I HATE that stuff. Not only do I have a headache that will make you want to fight your way out of your body, but I kept getting the headache back for two weeks after the last infussion! I am soooo sorry. I know your pain and would wish it on no one. hang in there