Norb! Help! Had problems with IVIG

    • Anonymous
      November 26, 2008 at 9:42 am

      Hi Norb! Happy Thanksgiving! Got your email but decided to post here! I got my first IVIG yesterday and they talked to me telling me what to expect. I will be getting IVIG every 4 weeks. Because we have different illness mine is only going to be in a 4 week process.
      They started my IV and explained the entire procedure. Then they started the Chemo. That mess burnt like fire going in but then it eased up. Then I started getting a bad migraine headache. So the nurse got me a Tylenol. Told her when I get headaches like this I get sick. Well she didn’t listen and I ended up barfing all over the place. Then my skin got itchy. They ended up having to send me over to the Day Hospital and placed me on a stretcher and stayed at that hospital for 8 hours yesterday. They had to give me morphine and phenergan and then benedryl. Told me my second infusion will not be as bad! Hmm! ๐Ÿ™
      Andy had to fill 3 RX’s yesterday and I have Reglan for nausea and vommiting, Tylenol 3 with Codiene for the migraine and then Benedryl for the itchy skin.
      The doctor had to come into the day hospital and checked me out and said I had some mild side effects from the drug and it will most likely go away in a few days. I still have the headache and itchy skin but no longer barfing.
      Is this quite common and will it happen everytime?
      Here I am having to cook Thanksgiving Dinner today and with all these drugs in my system, I hope I don’t burn my dinner! LOL!
      Ohh! Me and Andy have been together 20 years! He loves me alot and has been a good husband. But we do at times get our spells! LOL! I’m pretty lucky to have him around. He is my second marriage and my first marriage was a bad one too! When we met we fell in love instantly. But it took him 5 years of dating before I would say I DO! My first marriage caused that problem. I didn’t trust men to well and poor Andy at times had to deal with a woman that was afraid to trust. We do have a good relationship! Our first few years was rocky but we were trying to get used to being married. Honeymoon year was awesome, but that second year was tough! LOL!
      Norb! If I were to lose my husband it would kill me! I would actually want to go with him. I would not even know where to start without him! That man has been there for me through thick and thin.
      Sounds like you and Carol were made for each other and it’s not everyday we find our soulmates like that. I know Carol has been your caregiver like Andy has been mine. When you mentioned in your posting about Carol being sick. I felt your feelings. I too worry about my husband getting sick. Not because I need him to be my caregiver, but me myself wanting to help him when he is sick and have that fear of not being able to help him.
      I know my husband has to get tired of dealing with me at times. Am surprised he has stuck with me all these years being sick. But I try my best to do special things for him. And he knows it! The only thing we have problems with is the TV! LOL! We have 3 TV’s in this house and no matter what room I am in he comes in the same room and flips the channel! ROFL! That’s when I call him a Worm! ๐Ÿ˜€ He loves to take over the remote of the TV’s! I can get up and go into another room and turn back my movie and he will come back in that room and hog the remote again! Sometimes he comes home from work grouchy and I know instantly he had a bad day! So when he is like that I back off and give him space.
      You and Carol have a very special relationship and that to me is the most precious thing in life we can have. Andy and I being 20 years together. It’s a long time but boy did those years go by fast. When I found Andy! I found a one of a kind. I am so grateful that I was able to meet him and have a life with him. And I pray that we are together until old age.
      Well better get offline and get my dinner started. Lots of goodies to make today! Going to be fun being all dopie working in my kitchen! LOL!
      Happy Thanksgiving Norb and Carol! Hugs
      Linda H

    • Anonymous
      November 26, 2008 at 12:23 pm

      Hi Linda, saw your PM first and discovered afterwards that you answered here.

      Sorry things didn’t go too well for you. First of all, from what you posted earlier I think you received Rituxan and not IVIG. They are two different medications. It also sounds like they did not premedicate as per protocol. – or did they? You said they gave you Benedryl [U]after[/U] you had the reaction. I always get Benedryl first through an IV and 2 Tylenol 1/2 hour before they start the Rituxan infusion. Allergic reactions to Rituxan are not uncommon. This is the reason for the premedication. Also, the very first time infusion should be done very slowly. Mine took all day. Do you know how much Rituxan you received and how they diluted it? The first time it should be 1:1. Then it’s 3:1.

      Just checked the product description: headaches, nausea, vomitting are listed as possible reactions. I have two copies and will send you one of them.

      I hope you are feeling better and the turkey turns out OK ๐Ÿ˜€

    • Anonymous
      November 26, 2008 at 8:46 pm

      Hi Norb! I have been seeing IVIG’s so much on this forum and was not even thinking what I typed until you mentioned it! I meant to say Infusion! When I get a headache I can’t concentrate.
      Norb! I was so nervous about getting this treatment done yesterday that I forgot to even ask what amount they had given me. But they gave me an IV in my vein and there were two bags on the IV pole. One probably was the saline and the other one was the chemo drug Rituximab. She started the one bag first and then turned on the other bag. But both were running in the same line at the same time. One bag felt cold to my veins and when she started that other bag, it burned like fire. That had to be the Chemo because of the sting.
      They told me that I could take my medications before coming in and the nurse asked me what I took that morning. I had Prednisone and Ibuprophen and that is probably why they did not give me anything, because I had taken my meds almost two hours before getting there and they were anti inflammatory medications. The nurse at the office told me I could take them but could not take a few of my medications until after my treatment. But I was allowed the Ibuprophen and Prednisone. She did put something in the IV with a needle but I have no idea what that was either. Being my first time, I was just so nervous and was trying to keep conversation about the weather just to get my mind off of getting this treatment done. Instead I should have asked. I did not know what to expect yesterday and the nurse seemed to know what she was doing and explained a few things to me but with me being so nervous I was trying to focus my mind on other things. ๐Ÿ˜€
      But boy did it effect me! I still have a headache. Already lost my dinner tonight. Upset stomach now! I have been popping tylenol 3 with codiene all day today and the benedryl and still have the headache. Man! Thank God I don’t have to have this every week.
      I go back in 4 weeks to have my next treatment and believe me I plan on asking about everything now! All day today I have been popping out in sweats and one minute I feel half way decent to suddenly get icky feeling.
      Getting ready for bed now and hope I can sleep okay.
      They did tell me my next treatment will not be as bad and that usually the first one is the worst. I got there at the hospital at 8 in the morning and they started everything at 8:30. I did not get home yesterday until 5 in the afternoon. Was there almost 9 hours. They had me in a room with a recliner and then after I got sick and started getting the migraine they then transported me into the day hospital with me on a stretcher. I told that nurse that when I get migraines I get sick. I guess she figured with me being on prednisone and the ibuprophen that would be enough. NOT! Not with me! I start getting headaches I normally can feel them coming and if I don’t start something strong right away. I get sick! And that is what I did!
      Next time they will know better because they have my chart there and what happened. Think they will be more careful with me next month. But this stuff to start with is nasty!
      I feel like I have the flu! But it’s not the flu! Just makes you feel like you have it! They did have that IV running slow. But when she first started it that IV was running at a fast pace. Then she turned it down some. That might be what happened. Went to fast to begin with making me sick.
      I feel for you if you have to take this every week. Certainly is not a fun picnic. Next week I have to go and get a liver profile done. My doctor wants labs done every two weeks. And they gave me card to carry around on me also. An emergency card stating that I am currently on Rituxan! What is the difference between Rituxan and Rituximab?
      The doctor told me Rituximab but yet on the card it reads Rituxan!
      I will have to email you later on tomorrow. I can’t even look at this screen tonight without having my eyes feel like they are dizzy! Gosh Norb! I really feel for you having to have this done every week.
      How do you keep your sense of humor? LOL! Didn’t burn my dinner today but was staggering in the kitchen all day!
      I will chat with you tomorrow when I feel better. I hope this headache is gone tomorrow. Hugs
      Linda H

    • November 26, 2008 at 9:42 pm

      No time to read your whole post you write long one’s chicky!! Here is the condensed version.
      Before you start, benadryl, 2 reg stregnth tylenol followed 2 hours later with motrin or aleve, (Kevin uses aleve) Every 4-6 hours repeat the tylenol and benadryl if you take motrin, follow up 6 hours after first motrin, if aleve, 12 hours later. About the nausea, typically it is the migrane that causes the vommiting. Kevein used to take zofran for the vommiting, only to find out, zofran causes headaches. If you can keep the headache at bay the nausea gets better. Cold pacs on your head help as well. THE MOST IMPORTANT THING IS THE FLO RATE.. What is your max flo rate and how fast do you ramp up? Kevin starts out at 14, then 25 then 50 max of 50. DO NOT let them go too fast there is a formula that is followed according to your weight. Also, are you getting gammaguard s/d or liquid? Liquid is easier to take. You may have to endure this for a couple of infussions. Kevin’s symptoms improved with every infussion. now the headaches are about a 4/10. One last thing, we personaly continue the pre meds around the clock (24 hours) and 3-4 days post infusion for 24 hours. This has helped Kevin tremendously. Good Luck.
      Dawn kevies mom

    • Anonymous
      November 27, 2008 at 6:10 am

      Hi Dawn! Thanks for your advice. I have one major problem I will need to tell my doctor. When I start to get a headache, mine get aweful! They start out mild and within a half hour they go into massive migraines. Aleve and Tylenol are like taking candy for me. That is what I tried telling the nurse yesterday.

      With me having Lupus over the years. Typical over the counter meds like Aleve and Tylenol don’t work on my headaches. With not even taking chemo. A typical headache when I get them I take 800 mgs Ibuprophen, 10 mgs of prednisone, a gabapentin and then if that does not stop it and I see it getting worse I end up having to take a tylenol 3 with codiene.

      When I get a headache, they go into massive migraines that cause vomiting. I have seen me go for 3 days straight having these migraines and when I get them, I have to dope myself up. LOL! That is the only way to stop those suckers.

      The nurse didn’t realize how bad I would get but I told her in advance. She thought a regular tylenol would do the trick but saw different with me.
      This morning is a little better. Not as doofy feeling. Got up this morning and took my meds right away! LOL!

      I think the worst of this first dose is finally starting to ease up some. Still feel icky but not like the other day and yesterday. So it’s starting to ease a bit. Not much but better than yesterday.. Whew!

    • Anonymous
      November 27, 2008 at 9:54 am

      Hi Linda,

      Glad you made it through that 1st treatment. Sounded rough.
      I watched my mother take a couple doses of that stuff and it kicked
      her Butt. The first one was the worst for her. The Chemo Nurse and the
      Doctor both told us that the first treatment usually is the worst for the
      patient because the Drug does most its work taking out the specific cells
      and what you feel is the body dealing with major changes.
      It worked Super fast on Mom and helped her alot. She had a huge B cell
      lymphoma in her neck and within 24 hrs it visibly reduced it by 50%.
      Rituxan is Very Strong. I hope you do Well. Happy Thanksgiving. tim

    • November 27, 2008 at 11:19 am

      Have you tried Immitrex Linda, Kevin cannot use it because he is a child.

    • Anonymous
      November 27, 2008 at 2:16 pm

      Three years ago I’d a headache of the kind you describe due to a] a likely bad batch of IVIG [long boring story] and b] a reaction to the ‘changed’ brand administered. I don’t usually get headaches except on rare IVIG occasions or reactions to meds these days. It was miserable trying to ‘do’ a dinner with such a headache! Let your Andy learn how to ‘do’ a dinner and also if others are coming? Have them bring sides and other goodies. Know your limits and right now you’ve been blindsided!
      Look up the brand of IVIG you are prescribed [web up ‘brand’ ‘prescribing information’] and get to the side effects parts…you will find that what you are feeling isn’t uncommon? Just that the extent of it is abnormal. Further complicated by the intro of the Rituximab. [Do the same about that for prescribing info]. If it’s your first time for IVIG? I am soo surprised that they hit you with two firsts at one time. I’d have thought they would sort of do a try one…see if it works, then another?
      Honestly, If I were gonna barf when I’d already told them I was prone to barfing? I’d aim for their shoes! Somehow that sort of thing seems to get the true points across much better than any statements.
      Because you are on the Rituximab, you’re more likely to get some of the better anti-nausea meds for that sort of thing than if it were just the IVIG. Sad but true fact, this is life?
      I hope you make it thru this ‘holiday’ somehow and when done? Give Andy a hug! Maybe tomorrow? You mite be able to enjoy some of the leftovers. With time.
      Kevie is the Strongest one here for sure! He just goes along with the plan but is able to speak up when he knows something’s not right! As much as goes on with us? We really have to keep that child-like outlook [no matter how cynical we get] that Kevie and the other beautiful children here have! I don’t know about you, but their courages give me a lot of strength when I am down! Doesn’t make your head hurt less, but it can give you some extra strength from within that you didn’t think you had?

    • Anonymous
      November 27, 2008 at 4:03 pm

      I’m currently taking Diuladid 2mg and Regulan (pill form) when the migraines get really bad, maybe they could give you something like that?
      The Phenergan (pill) makes me more nauseated and the Zofran makes my migraines worse.

    • Anonymous
      November 29, 2008 at 12:31 pm

      there is a pretty specific protocol for administering Rituxan, and for the first time they monitor very closely and as norb says they take their time,(the bad reactions typically are the first time)

      these protocols are actually published and available (st Louis neurology center as one center)

      I had a similar reaction the first time with itching skin and they added an infusion of steroids, but there is was a pre infusion of the Benedryl and oral Tylenol and a saline solution to control concentration

    • Anonymous
      November 30, 2008 at 9:25 am

      I am pretty sure they gave the saline but I had prednisone and Ibuprophen at home and think that is why they did not give that tylenol to me until I started complaining about the headache. Benedryl! Not sure what they did there. Did see the nurse give something in my IV but not sure which of that it was.
      I have been one sick pup since I had it done. The headache has just finally eased up and today I feel a bit better. But now I am dealing with fatique. Probably because I was up and down getting sick for 5 days.
      Have not noticed much improvement from the drug yet either. I guess it’s too early to tell just yet and takes time.
      Not really sure I want to get this done again or not! Once a drug scares me, I won’t do it again! And now I am Miss Chicken! LOL! Big chicken too! Turkey sized chicken! LOL! Hugs

    • Anonymous
      November 30, 2008 at 12:35 pm

      Linda with anti-mag, the protocol normally requires multiple courses for efficacy, with some suggesting more some less, certainly the first one is the most bothersome and scary, but I think you should hang in there, not sure of the protocol for lupus but if you made it through the first one then the next should be easy. (easier)…

      I think I had four and then once a month for 2 to 3 months then it was supposed to go every 3-6 months, I stopped as my numbers were not going down.