Ivig Rejection?????

[jenglynn]

As my other thread stated, my Mayo neurologist said I had to stop my IVIG treatment because my side effects were too severe. I was having the IVIG at my home hospital and after my second treatment there they sent me to an allergist who prescribes IVIG and he said he would not give it to me again and basically due to concerns for my life they wouldn't give me any more treatments. My last treatment was pretty bad- very elevated BP- can't remember exact number but something like 180/130 or something crazy for me who is very hypotensive. A horrible headache, like one I have NEVER had and I get migraines and headaches almost daily (I have post concussive disorder from 6 concussions). Serious breathing problems, facial flushing like I had a sunburn and my legs turned bright red and hot and swollen. Then, halfway through the rash and hives started. Horrible cold sores all over my mouth and onto to face. Lovely. So my Mayo doctor agreed.

I thought I was just having an allergic reaction, turns out according to my Mayo doctor after ordering labs and going over them that I was seriously rejecting the "drug". My Ferritin level which was always low in the past (8-12) was up to 83 (the week before it was 70). I thought that was the ONE good thing that came of it is that my iron stores went up. Apparently, that's not the case. A rapid rise in Ferritin indicates that the body is rejecting the treatment. The rest of my blood tests were not all that encouraging either. Hemoglobin went from 13.2 to below 9. Hematrocit went from 34 to 25. Red blood cells had dropped quite a bit (sorry, don't have the lab in front of me so I don't remember exact counts of everything). WBC count is elevated- bad thing about that is that I don't get fevers. Normal temp is 96.8 to 97.1. I had acute appendicities in which they operated and my appendix was 80% to rupture and my temp. before surgery was 97.0. last year. My sodium and potassium were both VERY low. Don't get this because I do nothing but drink water and gatorade (with SALT in both) ALL day. Kidney function numbers had changed too but I don't think they were that bad. But I have had a problem with urinary retention lately so I wonder if that is related to the kidneys and the sodium and potassium. There were other abnormal labs he mentioned but I can't remember them off the top of my head. I have to have labs every 2 days now for the week or more for repeat labs to hopefully see things normalize. I guess it is pretty rare for IVIG (according to my Mayo doc) to cause any problems, it is pretty benign for most people. Not saying people don't get side effects and it usually only works about 50% of the time for people like us. But to cause problems like this is unusual.

SOOOO... now I guess I have to wait until all of this IVIG is out of my system before I can move forward with any other treatment. He told me 8 weeks maybe. And I might experience all of those side effects during that time. Hopefully to a lesser and lesser degree. Something to look forward to I guess Has anyone else experienced rejection of IVIG? If IVIG didn't work, did they try something else and what was it? He mentioned other immune therapy but isn't sure that will be the way to go with what has happened with this. Whatever was in that IVIG my body just didn't want to play nice AT ALL. So advice???? I know I have to wait this out but I am feeling pretty miserable in combination with my normal P.O.T.S/Autonomic Neuropathy whatever in the heck it is that makes me faint several times a day. My BP has been so low... when I woke up today it was 65/52, lying down. I sit up to take it and it didn't even register on my monitor so I didn't even bother standing. Nothing has gotten any better, if anything I am worse... 12 days at Mayo and weeks at different hospitals have given me nothing but more questions. Thank you!!

[issie]

IVIG carries the same warnings that blood transfusions do - there can be serious consequences from them. Sorry, it messed you up so bad - hope you feel better soon.

Since, I have auto-immune issues too - I decided that IVIG was not something I would even consider. The only other thing they usually offer is plasmapheresis. This is the cleansing of the plasma and then returning it into the body. This can be done in a continueous cycle via a machine sort of like kidney dialysis. With IVIG there are donor immunoglobulins from others that are combined together and infused. Like a blood transfusion - there can be rejection. Evidently that's what happened with you.

Hope you recover soon. Sounds like your docs are on top of it.

[Katybug]

jen,

Nothing to add in the way of knowledge but just wanted to say hi and that I am still thinking of you everyday and hoping for your recovery very soon.

Katie

[anaphylaxing]

Sorry to hear this Jen. What an ordeal you've been through. I hope you improve over the next 8 weeks. Are you still bed-ridden with frequent syncope? I hope you are feeling better.

Keep us posted as always

[HopeSprings]

I'm sorry too. How frustrating. Hope they can find a better alternative for you.

[jenglynn]

Thank you everyone for your support. I WISH I would have researched the IVIG a little more before I went through with it. I guess I was so sick at the time, and at the hospital alone mostly, I just wasn't myself. I was told all of the initial side effects were normal and from what I read, it seemed to be normal. It wasn't until my last infusion that I experienced the worst reaction, which was getting close to anaphylaxis according to the nurse and I believe they discontinued right then. As soon as I stood up I fainted flat on the floor so I am not very clear on all the details.

I am still bedridden with frequent syncope. If anything, it has gotten worse. My BP numbers are lower than ever. I do have a wheelchair and I can sit for a while before experiencing symptoms but an hour is my absolute limit. I never have syncope while I am sitting but tachycardia, dizziness, blurred vision, etc. My house is not very wheel chair accessible so I can't use it much to get around. I am still have to crawl or scoot to move around for the most part because of the amount of syncope. I just can't risk another concussion right now. I have a helmet but was advised even with the helmet on it won't prevent a concussion so I still can't risk the syncope from standing. I am ordering one of those rolling walkers with the seat.. That way I can sit on that and get around using my feet to move around different rooms.. and spare my knees. I plan to keep that downstairs in our basement bedroom. I do stand up as often as I can, daily, right next to the bed so I can sit right back down when I feel syncope coming on. I try to get myself upright as much as I can because I know that this will continue to spiral if I don't... but after about 20 or 30 seconds syncope comes. Sometimes I recognize it but most of the time I have no warning at all. I have had syncopal spells since coming home but so far I have been lucky- no major injuries, just the typical bumps and bruises.

Hindsight is 20/20 but I sure wish I would have never considered the IVIG. Now I am feeling miserable ALL the time, not just while I am standing and sitting. Before, at least while I was lying down I felt like a normal person! Plus, with all of these changes in my labs, who knows what kind of damage it did???? I hope it is all just temporary... it seems like every thing I try just fails and I end up worse off than I was before. I am frustrated. I am a mother with SIX children to care for. I am so incapacitated now that it is so hard even get myself upstairs. By the time I crawl up both flights of stairs my HR is over 200 and I am so lightheaded and dizzy that I often will get syncope even when I am on my knees. I do make this effort every day to spend an hour or two up in our living area with the kids but there have been days lately when I haven't been able to do even that. It is almost as if they are getting USED to me being this way. That makes me more sad than anything else. This has become their new normal. A mom who spends all her time in bed, a chair or a wheelchair and can't stand up longer than 30 seconds without going unconscious. They are constantly asking me what do I need, what can I get you, telling me to eat, etc.... I am their mom and I should be taking care of them. NOT the other way around. How many times have we ALL said this???? I WANT MY LIFE BACK! I am afraid it will never happen.

I am sorry. This pity party was not the intent of this post and it won't do me any good and my thoughts are my reality so I need to control them and make them positive. And I have much to be grateful for. I just hope my next set of labs show good news that my blood results are improving and not going the other way. This IVIG is just way more than I bargained for and was NEVER expecting this kind of reaction based on the information I was given. That's what happens when you don't do your own research! Lesson learned!

Jen

[issie]

So, so sorry for you. I wish I could make it better - but all you can do is wait it out and hope that things will level out. Pay attention to how you feel and if there are any other negative feelings - be sure to call the doctors. There are others on the site that have had negative results with this too - I'm hoping they will chim in and tell you their story . . . .but, then again that might scare you more. Just make sure the doctors watch you and keep a close watch on you.

Hoping for tomorrow to be a brighter day for you. (((((Hugs))))))

Issie

[arizona girl]

Oh Jen, I had concerns about what type of IVIG they were giving you because of your IGA. I looked up the products and there are several that start with gamma, so I couldn't figure out which one you were on. But several of them that start with gamma had IGA in them, which would be a no-no for you.

Do you know if they checked to see if you had or have IGA antibodies? Please look up IGA deficiency, it is one of the primary immune deficiencies and is categorized by itself. People with this type have to be handled differently when it comes to ivig. Was this a neuro prescibing? If it was he may not have been up on all the different forms primary immunes come in, as an immunologist would, like the one you are seeing at home. Ask that doctor about the IGA stuff he should know, and get your labs to see if it was done before they started infusing you. They still may be able to check for the antibodies, but you usually have to be off ivig 3 months to have clean lab results, that are not being influenced by infusion. That mayo doc sure sounded blase about the ivig, he is full of it!!!! Any patient can or may have adverse reactions, kidney failure and get aspectic menegitis from it. Of course it is a blood product, and you could get something from it, but the USA products are very carefully cleaned and monitored for safety, so I wouldn't worry about that so much. I did have the opportunity to research ivig before starting it, and decided to go forward after that. The first kind was awful, but not like your reactions. Privigen has been wonderful, with just minor side effects.

Are they giving you anything to treat the reaction?

The only good thing is that it does seem that your stay at mayo did stop the progression of organ failure, or they wouldn't have let you home. Do you trust your local immunologist who shut this down? He might be a good resource for you to talk with, about what is next. Depending on what you find out I would make a complaint to mayo about this. They have a whole department that handles patient relations, they should be told about this. That neuro was arrogant to keep insisting on treatment, when you were obviously reacting. If you were you should have also been on pre-meds and added iv benedryl and decadron, to buffer any reaction.

Issie, is right the other option might be plasmapheresis. I did that first, and my autonomic functions corrected. A lady I met at the hosptial had polyneuropathy had been getting it for 25 years. She had tried IVIG and it didn't work for her. So you may look into that. They have to insert a catheter and you have to watch for infection with that and also anemia, both of which happened to me. The pheresis itself though is very easy, once they implant your catheter, they just hook you up and they can also draw your blood for labs before starting each treatment so you don't have to get stuck. That was a nice up side for me.

If I can help in any way let me know. I'm so sorry this was handled so poorly for you. Also you should be wearing a helmet so you don't get another concussion.

[juliegee]

(((((Jen)))))