Yet Another Ivig Issue! Input?? Please?????

[jenglynn]

Frustating, frustrating... Ugh. While I was inpatient at Mayo I had my first 5 doses of IVIG (which were not "full" doses) after my diagnosis of Autoimmune Mediated Autonomic Neuropathy. I was given the usual warnings, 50/50 chance of success, yada yada. My first doses were not "terrible" but I had immediate headaches (like migraine type) and full body aches, flu like symptoms. Throughout the entire infusion my BP kept getting higher and higher and they would always have to slow down the rate as it would get incredibly high (180/130 HR of 42 was the highest I recall). This is VERY high for me. My usual BP lying down is 80/60 so I am sure my headache was made worse by this. Slowing the rate of the transfusion helped the BP a little but it still stayed quite elevated. But other than those fairly typical effects, nothing else happened that can think of. I was pre-treated with Tylenol and Benadryl.

My first weekly treatment I was still inpatient but had been transferred to my home hospital. This was a higher dose than the initial 5 IVIG doses. Because I was inpatient they did not raise the dose at all, just let it run at the slow rate. I could tell the first moment the drip went in... headaches and body aches right away. This time I could actually "feel" it in my veins. Almost like a burning feeling but really cold (which seems impossible but the only way I can describe it). I had been up the entire night before for some reason so I was able to sleep through a lot of it but my headache kept waking me. Same with the aching. BP was still high but during the treatment nothing really seemed different except the feeling in my veins. The two things that changed is that my legs got red and swollen but attributed it to the achiness. The other is that I noticed a lot of shortness of breath. Well, that is one of my daily symptoms anyway and I couldn't tell if it was worse than usual. About 3 hours after the infusion I developed a rash and hives. More Benadryl and a doctor came to see me and said these are typical reactions.

Last week I had my weekly treatment. This time outpatient (because thankfully I was FINALLY released from the hospital!!!! YAY). This time everything else stayed the same. High BP, headaches, body aches, the feeling in my veins, same feeling in my legs: red and swollen and very hot to touch. This time though when the nurse came in after the first 5 min. of infusion she said my face was bright red like I had a sunburn. Alarmingly so. I also struggled with my breathing. The nurse called the ordering doctor (who just ordered based on Mayo's orders and has NO knowledge or experience with IVIG) and he said I needed to see an allergist before my next treatment. I did continue with the rest of the infusion because the doctor instructed her to but she had to stay in with me the whole time and if anything changed to stop immediately and lowered the dose as low as possible. Her opinion was that my body is rejecting the IVIG and that each reaction is getting worse and she is afraid that my next one will be anaphylactic. She said she has given IVIG hundreds of times and these side effects were very worrisome for her and was uncomfortable even continuing.

Fast forward to today. Saw the allergist today, which I was not sure about. What would he know about any of my conditions???? He does prescribe IVIG all the time. So when he went over my reactions his initial response is that they are making me miserable. He knows very little about autonomic dysfunction but he knows what it is... but he says that IVIG is really only approved by the FDA as effective if they know exactly what they are replacing which in my case they don't because the test hasn't came back yet with what kind of autoimmune issue I have.. and very likely won't be able to answer that question anyway. Less than 50/50 chance I was told. He said that it appears my body is rejecting this treatment and in his experience won't help me based on this info. I developed a terrible cold sore outbreak on my lips, top and bottom and toward my nose. He said he COULD treat me with a steriod such as predisone which they have not tried to help with the side effects... but he said that the dose he would have to give me would be so high to control my severe effects that he would be afraid of how I would react and that he personally would not order it without assistance for another doctor. He thought it could cause severe hallucinations, erratic behavior and other unpredictable behavior that he wasn't sure how it would affect my other illnesses- such as my autonomic problems, adrenal surges, Post Concussion Syndrome (I have had 6 concussions and four within the last 4 months). His recommendation was to stop treatment because their first rule of care is "Do no Harm". I have tried all week since last week to talk to my neuro doctor at Mayo without success. I tried again this afternoon. STILL have not talked to him. I am trying to get a Care Coordinator so there is someone who can communicate these issues because the hospital that I am currently at does not specialize or having anyone who deals with my complex issues, that is why I went to Mayo in the first place but NO ONE is communicating with anyone.

SOOOO... I am supposed to have my next IVIG on Thursday and I don't know what to do. My Mayo doctor won't get back to me. I spend 4 days out of 7 even more sick than I normally am because of these treatments... and IF they HELP ME I am all for it. But if my body is rejecting them what is the point???? I also don't want to have an anaphylactic reaction next as I have been told several times is a strong possibility. I just really wish that SOMETHING would go easy. I am completely unsure about what to do. I don't want to abandon the plan that we made at Mayo but he isn't getting back to me. I asked about changing brands but that isn't an option in my area. Apparently, the brand I am using is the most used and safest one (Gammamax or something like that???) These Mayo doctors are impossible to talk to and I am getting frustrated.

ANY ADVICE?????? Has anyone had side effects such as these while getting IVIG? Does it seem like my body is not responding as it should? The only positive change I have seen is a large increase in my Ferritin levels. However, my last blood test the other day showed a significant drop in my hemoglobin and hematocrit. Also, my BP has been ALL over the place since this started as well as my HR. I have always had predictable orthostatic hypotension. Now, sometimes my BP is very high and pulse low (it has gotten as low in the 30s or 40s) and other times back to my normal really low BP numbers. No matter what my BP is the orthostatics hasn't changed. I still have at least a 30 point drop from lying to sitting and another 30 point drop from sitting to standing. HR changes as well as before. What would you do in my situation????? Thank you!!!

Jen

[icesktr189]

I have never tried it, but if I were in your shoes, I would stop at least for now. Those are scary symptoms and doing any dose of steriods with POTS can really aggravate symptoms. I would wait to hear what Mayo says first and then go over a plan of action. Anaphylaxis is not something you should mess around with, and if it is making symptoms unbearable with no promise of help, I dont see a reason to continue.

Hope you get some answers soon and start feeling better!

[anaphylaxing]

I would REALLY want to talk to the Mayo docs. I kinda think it is quasi normal for your body to reject it as it foreign and that's why they premedicate alot with steroids. I would NOT get the next infusion without MORE premedication than you received and constant supervision during the infusion, but I wouldn't want to delay to much and not get the next one in case the frequency and schedule are supposed to help

Can you call his office and ask to speak to him or leave a message with his nurse? If unavailable ask for a neuro on call who is covering that you can speak to. You probably tried. But, that's how I would proceed

[Katybug]

jenglynn,

So sorry this is also becoming a fiasco. If anyone deserves a break, it is you. I haven't had IvIg but I have to say I don't think I would have another infusion without having a conversation with the prescribing doc at Mayo. I feel like maybe you, or you and your husband, need to be more aggressive about getting a response from them. A week is more than enough time for any doc to return a call.

In the meantime, if the local doc is telling you that your life is in peril to go forward, I think I'd listen to him. (Sorry for being blunt but anaphalaxis is no joke.)

Do you know if delaying the treatment by a few days or a week (until you can make contact with Mayo doc) will be a significant set back with this treatment? If you choose to go forward with tomorrow's treatment, could you request to have the infusion at the hospital so you are right there if you should have a full anaphalactic response? At least treatment would not be delayed if you are already at the hospital.

I truly think of you daily and I will say some extra prayers for an answer for you today. Big hug!

Katie

[janiedelite]

I agree that if it gets much closer to your next IVIG treatment date and you still haven't heard from the prescribing doctor, you may have to ask for the neurologist on call. Can the allergist's office help communicate his concerns? Good call on getting the care coordinator.

[rubytuesday]

I have same fears of side effects with gamma globulin. I was to have IV Ig but now immuno want to start with Hizentra sub q at home which I feel is less risky (the less invasive), I posted 2 days ago seeking support groups for those on IV Ig and 2 were given to me. When I read the blogs there are some bad side effects and it doesn't take much to go from headache to migraine. I have IgA and IgG2 and other compliment autoimmune deficiencies that put me at high risk for pneumonia, strept, respiratort/sinus/ear infections, meningitis to name a few. I have a page long list of medication allergies/sensitivities. idffriends.org is a great website to read what people are saying about their experiences with different brands. Looks like some get along alright but some have to change manufacturers. The Hizentra seems the worst as far as I can tell as it has the most concentration (thickest viscerally) of human antibodies. I am not looking forward to going through this the rest of my life, but I had just had a migraine (not taking anything) with BP 75/44 Sat morn, puking guts out Sat. afternoon and am only 90 lbs (with clothes on). Had to call DM (elderly living in another town) to come sit with me as DH was out of state on business. This Hizentra is also more dehydrating than the rest from what bloggers say. Some pre-med with tylenol and benadryl (or zyrtec), some have had to add small medrol 4 day dose pack and all say drinking tons of fluids day before and day after helps cut down on headache.

I had a monthlong infusion of DHE for status migranous years ago and since I've not much subcutaneous tissue, always developed terrible cellulitis at the needle insertion sites (this Hizentra is much thicker than the DHE so it's going to take it longer to absorb). The other thing I read was that those on home infusions slow the rate down when symptoms become too aggrevating--takes longer to get it in but seems that not as pronounced side effects.

I would still contact the ordering physician at Mayo to see what could be done. But this hopefully might lend additional insight. You are receiving human antibodies. If donor has some virus or thing going on that he isn't aware of when he donates, it gets passed on to you (in my case who am already too low in my own antibody production to fight the infections). A high BP like that is worrisome as I read this stuff can damage your kidneys. I already pool blood and fluids with the autonomic nervous system failing (and my kidney function is normal, so I sure don't want to mess up one of the few parts of my body that seems to be working okay).

Wishing you the best.

[jenglynn]

Thank you all so much for your caring replies. It does mean a LOT. FINALLY, at 5pm this evening I heard back from my Mayo neuro. I had already cancelled my infusion for tomorrow in case I didn't get to talk to him.

I discussed my symptoms and he said that I could not continue with IVIG because my body is rejecting it, rather seriously. He said, unfortunately, my body will continue to fight what is in my body so I have several weeks of this to deal with before I start feeling better. I keep breaking out in awful cold sores (both lips and up on my face and nose.. just awful), headaches that I can't even explain, crazy changes in BP and HR- very abnormal for me... usually have low BP and high HR.... now I am having both high BP and really LOW HR and it changes constantly, flu like symptoms and body aches and chills. And I keep breaking out in hives and a rash, will last a day or so and then go away. Came back again tonight. Fabulous. So obviously IVIG was not my miracle cure. I won't pretend I am not disappointed. I was really hoping this was my answer...not only that but now I have nothing to try and have to wait until the end of March when he anticipates when all of the IVIG will be all out of my system before we come up with another plan. He says there are other immune therapy treatments to try but after my reaction to this one, we will have to be extra cautious. I try hard not to get too discouraged but my level of disability and debilitation right now is really drastically affecting my life- as you all well know how it feels. I guess I wanted an easy answer and there is no such thing. And he told me that I would probably be feeling pretty yucky as my body continues to rejects these antibodies in the IVIG and I am going have a rough few weeks until I get this out of my system.

Oh, and the ONE good thing that I "thought" happened from the IVIG??? I had my ferritin levels (which have always been low- between 8-12) rise to 70! I thought that might be a good sign because it meant maybe I was absorbing iron. Well.. my Mayo doctor told me that he wished that the hospital would have sent him the copy of the test (this test was taken at my home hospital while in inpatient rehab after I left Mayo) because a large rise in Ferritin is NOT a good sign, but an indicator that the body is going through rejection. Plus, my hemoglobin and hematocrit dropped quite significantly as well which is also not a good sign. So I have to go in and get a huge lab panel to see if there was any "damage" done. He said that "MOST" of the time it is a pretty benign treatment that he wouldn't worry about it.. but in my case he needs to to get the testing because of the severity of my reactions and the abnormal blood results he has already seen. And he said, "Jen, I hate to say this, but if someone is going to have a problem with IVIG, it's going to be you." Thanks, NOW you tell me But, he did reassure me that it would be rare and most likely, all will be good. It is just a matter of getting it out of my system.

Odds are I will be just fine as soon as it is all out of my system and then we move on to trying to find the next treatment.. but it is just another delay. But.. I keep telling myself.. I should be grateful to at least have the diagnosis when so many of us have doctors who won't even listen to us.

One of the big problems I am facing is coordinating the care between these two hospitals. They are each taking tests, not sharing them and making decisions without being fully informed. I requested a Care Coordinator at my home hospital and I am also going to request one at Mayo... so that way there will be people on both sides who can hopefully make sure that all of my info is being shared with both facilities. If my last labwork would have been shared with Mayo 2 weeks ago, I never would have had to go through the last 2 miserable IVIG infusions and gotten as sick as I did... very close to anaphylaxis... could hardly breathe and severe facial flushing and dangerously high BP, not to mention the miserable full body rash and hives and cold sores.. because the Mayo doctor would have recognized the abnormal blood results and stopped it immediately. I hope that helps prevent such things in the future.

So now I wait patiently for Plan B! Can't wait to find out what is up his sleeve next time. He did tell me he would be doing lots of researching and thinking about the next option for me and not to give up because he isn't giving up on me. That helped me feel better and of course I will never give up on trying to get my life back. Even on bad days, I count my many blessings and realize how much I have to fight for

Thanks everyone again for your support!

Jen

[Chaos]

My heart breaks for you every time I read one of your posts!!! I am SO glad you finally got to talk to your Mayo doc but SOOO sorry you had to go thru all of this, especially these last 2 sessions that would have been avoided had he had the correct info... although I'm wondering why they didn't order it at Mayo before you left if it is such a concerning issue. Guess hindsight is 20/20 and all that, but I'm so glad they put a stop to it before it truly became any worse than it was (hard to imagine it could have been worse...).

Wish I could give you a hug, but that would probably hurt with all those rashes and hives and cold sores...so please accept a virtual hug and know that you continue to be in my thoughts and prayers.