IVIG Question

[pamperedmom]

Hi! Everyone, I am new here.  I have a question about IVIG. I know everyone reacts differently, but hoping for some understanding. Two weeks ago I went in for IVIG. 15 minutes into it at a rate of 75mL/hr, I felt tightness in my chest, tachycardia, difficulty breathing and it led into a simple partial seizure. (I have those). Anyhow, I can have all those symptoms leading up to a seizure and wasn't sure if it was the IVIG or not. Well, my Dr. wasn't on campus, so they canceled and rescheduled it for this week when she would be here. 

Yesterday went pretty well.  They had to stop it a few times because of tachycardia and back pain, no big deal.  After I got home I had the flu feeling, nausea, back pain and headache. Again, no big deal. Well, I go in today and they start me at 50mL/hr. An hour into it I started feeling pressure in my upper chest, neck and head. Then I started feeling really hot. I waited a few minutes before saying anything. They stopped it and waited 20 minutes, but the pressure in my neck and head continued. After an hour they said they canceled the rest of the week and told my Dr. IVIG isn't for me. I was surprised they didn't just stop it for the day. I still have some pressure but the tylenol/ibuprofen have helped some and I am running a low grade fever. Is this a normal procedure to just stop all IVIG like that? If I don't have this as an option, what other options are out there? 

I am worried my Neuro will give up on me since it didn't work. Thanks in advance

[Guest ANCY]

What is your neurologist treating with IVIG?

I had one very small dose 5 years ago because of a similar situation and the Rhumatologist wasn't comfortable continuing... 

2 years ago my neurologist ordered it and I got a full 5day trial, they actually did it in the hospital because they were afraid it would drop my low bp even lower. I had the sa,e symptoms but my neurologist was ok continuing because he's more familiar with the drug. He said it can cause aseptic  meningitis which explained my head and neck pain. Took me about a week to feel better from that after completion of treatment.  It was absolutely worth it for me though because it made a huge difference for about 3 months.  Same thing the second time they did 5 day treatment. They never got me over 40 mls/hr because then the pain would be absolutely intolerable. I used Tylenol and Toradol for the pain also zofran for nausea and benadryl to combat the meningitis. This was enough for me to eak by during the infusions, of course iv benadryl makes me feel like a zombie and not care about anything lol! 

I never received ivig  the way my neurologist wanted... (5 comsecutive days followed by twice a month for 6 months)  due to changes with insurance and denial of appeals I can no longer receive ivig.

My GI Dr ordered Ig testing 2 weeks ago and found out I have an IgA deficiency. Have not discussed this with my neurologist yet but hoping that maybe with the new diagnosis they will be able to convince the insurance company.

[Courtney]

I was receiving the IVIG for Sjogren's and Autonomic Neuropathy.  My Neuro did what yours did, 5 consecutive days of 200mL/day. They took me down to 50mL/hr, but said they wouldn't go lower. They said it was the lowest they could go.  I'm really glad it helped you and I am hoping my 1 1/2 days may have some benefit.  I can't do benadryl, it makes me feel anxious and the IVIG definitely caused me to have tachycardia.  It stopped once I stopped the infusion, but during it, my HR was never below a 100 bpm.  

I'm worried because of two failed tries, my insurance won't okay anymore treatments because they are so expensive.  I have been very anti-meds with all that I deal with and this is honestly the first thing I have tried. My Dr. is new and I am hoping she isn't frustrated they stopped everything. 

I would loop up IgA deficiency, but I was under the impression that if you have low IgA's you are really susceptible to side effects and reactions and IVIG isn't recommended. I am no Dr. though and I am not sure if this is the case. I don't even remember where I read it from, but definitely something to talk about with your Dr. 

If it helped you though, I pray you can get it again. That would be great news for you!

[Clb75]

I've been on Ivig for 5 years now, it can be a very difficult treatment with a lot of reactions or side effects. Are you taking Benadryl as a pre -med? Some people have allergic type reactions and this can help-- not sure if that's what happened with you but the tightness in your chest and trouble breathing made me think of it. Flu like symptoms are a pretty common side effect, particularly at the beginning.

Ivig can cause the lining in your brain to swell, which in turn causes severe headaches, migraines or aseptic meningitis. Head pain, neck stiffness or pain and fever are signs of this which sound similar to some of your symptoms. They can give an IV steroid at the beginning of the treatment if one develops headaches during the infusion, or even after Ivig is done if you get them after the infusion is over. I get migraines a few hours after I'm done, so I get the IV steroid (solumedrol I think) at the end of the infusion which helps after I go home. 

Also, Ivig is like oil in your blood so drinking tons of water is very important. I drink 6 glasses starting 2 days before, drink several glasses during the infusion and a few more once I'm home, then 6 more the day after. I also get a bag of saline after Ivig which helps to dilute it as well. Keeping the infusion rate low helps with side effects too, though if you're at 50 that's pretty slow. There's a magazine and website called "IG living" which I've found to be a great resource on all things Ivig, you can google them if you'd like. 

Lastly, some people switch to a different brand and may have better results, though for some diagnoses only certain brands are approved so check with insurance. Not sure why you're getting it, but plasmapheresis may also be an option. This is a serious treatment as well, so hopefully they can figure out something with Ivig. Good luck!

[Courtney]

Clb75-Thanks for all the info. I didn't take benadryl or prednisone. Both really increase my irregular heartbeats and tachycardia. 

I'm finally feeling a bit better today, but I have never experienced that kind of pressure pain before and my brain literally felt hot. My Dr. never got back to the infusion nurses or me on how to treat or help it. Kinda frustrating. Atv least it's better now. Don't know if I'll go through it again though. 

Is the IVIG working good for you?

[Psalm 23]

Hello,

I'm sorry you've had such an issue with IVIG side effects. For some they can be so problematic. As was pointed out if your insurance approves it changing to a different brand can possibly help. I'm on Privigen. The rate starts at 30-45/hr and is not to exceed 75/hr but can be run less then the 50/hr if there is a tolerance issue. It did have to be stopped and restarted and the rate reduced a few times because of a transient hypertension issue. Per the Neurologist order I premedicate with Tylenol and Betamethasone. Normally Benadryl would also be given but because I am already on a large amount of antihistamines it's left out. When I first started the infusions I dealt with significant flu-like symptoms, lower back pain, chills, tachycardia etc. I can't say I have experienced difficulty breathing or chest. neck or head pressure though. I have found that Lidocaine 5% patches helps the lower back pain and Zofran helps the nausea although now I experience pretty insignificant side effects such as a stuffy nose, body vibration, slight tachycardia and sometimes my feet get a little red and swollen. I guess the way in which the IVIG is given depends largely on what it's being given for and your Neurologists preference. Mine began as once weekly for 6 weeks and then every other week. After about three/four months worth of infusions I began to notice significant symptom improvement. I'm receiving IVIG for autoimmune autonomic neuropathy.

I do hope there is a solution. Best of wishes to you !

[Courtney]

Thank you so much, Psalm 23.  I apologize for the delay, but the IVIG made me so sick and so tired that I am just now getting my energy level back and able to do things. But, for about a month afterwards, I didn't even have the energy to do everyday life and the pain, OMG the pain!  However, though, I didn't notice at the time, but I do think it significantly helped with all my heart issues.  Because, they are now coming back and I didn't even realize I hadn't had any problems until they returned. I was so focused on my pain and fatigue, I didn't notice other differences. I still don't know if it's worth going through again. That head pain I had for over a week was pretty intense. We will see. I am glad it's helping you. I too am using it for Autoimmune Autonomic Neuropathy. Blessings!

[CBS]

Hi, I'm new to the site.  I have many things wrong with my body- dysautonomia, fibromalygia, Rheumatoid Arthritis, Mast Cell activation among some! My rheumatologist wants me to start IVIG provided insurance will cover. This makes my Cardiologist that treats the dysautomia things very happy as well. Does anyone know if its the same amount for Dysautonomia as RA?