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This topic contains 36 replies, has 0 voices, and was last updated by  chirpybirdy 3 years ago.

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  • #9681

    chirpybirdy
    Member

    Has anyone experienced high blood pressure after receiving IVIG infusions. I got my infusions about 3 weeks ago and I have been checking my blood pressure at my local pharmacy. It is high (not extremely high) but moderately high. I have always had very good blood pressure 119/80 all my life. Since getting my first infusion it has been running somewhat high. Has anyone else experienced this? Could it be the stress that IVIG causes in my body, especially the first time? Will I be able to get it under control once my body adjusts to having IVIG down the line? Should I be worried? I have not contacted my doctor about this. I have been keeping a log and plan on bringing it to her attention next week at my 4 week follow-up post IVIG appointment. I have had a mild headache every night now for about two weeks (the headache goes away after I get up in the morning). Maybe this is due to the high blood pressure? This IVIG is all still so new to me. I have only had one infusion and don’t know what to expect and what to worry about.

    #99309

    Anonymous

    You’ve had 1 infusion over 4 weeks? Did you do a typical loading dose of 4-5 days?

    I think it would be wise to contact your dr & let her know about the high blood pressure. It’s my understanding that IVIG typically won’t cause a lasting high blood pressure reading, meaning it would be right after the infusion & then go away & not sustain for weeks.

    What is your blood pressure now when you test it?

    Is it possible the blood pressure machine at the pharmacy is not working correctly?

    Kelly

    #99313

    homeagain
    Member

    also take into consideration all the ‘fluids’ that have been pumped into you?
    The best ways are to ‘hydrate’ before infusions, and that can raise BP’s on it’s own? But, also, besure to hydrate afterwards to help flush out whatever the IVIG’s do to help you? They can be hard on the liver only because that is a major ‘filter’ for all going on in our bodies. Add to that the options of pain killers we take and they too, can impact that amazing organ.
    Back to BP? I’d gain about 4-7 pounds after an IVIG round at times? Scary? But, it’d go down after about 2-1/2 weeks and all would be well,…until the next time. Overall? Better to be hydrated than not!
    Or? Safer than sorry.
    The headache? Bring this to your doc’s attention as a possible ‘too fast a rate’ thing? I’ve always found that whenever my rate was upped over XXX number? I’d get headaches. Ironically, the only place I had this problem was in a hospital infusion setting. In other settings: home, and at infusion offices..only once at my start outs of infusions did I experience such a headache! Sooo? It is truly important for you to keep your OWN notes on when and to what rates your infusions are ‘upped’. I know my own #’s limits and that is from start to finish…and? They are NOT the normal rate stats. But, they work for me and all is w/o complications. Complications are not something we WANT.
    Talk long and hard to your doc? But first maybe call the IG info 800# and see if they have any documentable info on this? Best to check first, and avoid ‘cut-offs’ later? Good luck! It’s soo much hassle to do this stuff? But it is essential if you want to keep on IVIG! My heart goes with you!

    #99318

    chirpybirdy
    Member

    I did get a loading dose but it was not over 4-5 days. It was over 2 days. She said I was getting the same amount of IVIG over the two days. So maybe I got a higher concentration for my loading dose that is causing my headaches. I am going to run over to my GP this morning and get a true bp reading. Each pharmacy I have gone to gave me a different reading. One was really high the the other two were slightly high. But they use those $40 cuffs that you can purchase at Walgreens which I hear are not that accurate. I am also going to call the infusion center and get info on just what I was given in what strenght and how fast so I have a record. I got another headache last night about 2 am and it is still lingering this morning at work but somewhat better. The weird thing is when the headache comes on I also get dizzy or light head feeling too. Weird?

    #99320

    Carolyn
    Member

    My blood pressure went through the roof both times I had GBS. I had to be put on medication. I took adrenal extract and it brought it down…but I had to take alot since it is difficult for the body to absorb/use it. When I asked the pharmacist the safe way to get off of it, she said that NO ONE ever gets off of it. Sheeesh. So I called 2 different pharmacists in FLorida and they told me the correct way to wean off of it. Always get several opinions. I wish you well on your journey through GBS. I did not get IVIG either time with GBS.

    #99321

    yuehan
    Member

    Did I read your post(s) correctly? You recently had your first infusion, it was a standard 2g/kg loading dose AND it was administered to you in a two day period?

    More questions-

    1. who ordered that it be done in two days?
    2. during the administration did ‘they’ take your pulse?
    3. record your B/P (blood pressure) ?
    4. listen to your lungs?
    5. And for each of those- How often?

    either way, I’m flabbergasted.

    #99322

    chirpybirdy
    Member

    I called the infusion center and they said I got 55 grams of Gammulux each day over a 4 hour period. They started the infusion very slow on the first day. she said at 80 and over the period of 4 hours increased it to 300 flow. I handled it without any complications. Checked my bp every 20 minutes. So the second day they ran the 55 grams over about 3 hours. I did question my doctor when I found out I was only getting two infusions for my loading dose and she said that she was giving me the same amount of gammulux but dividing it over 2 infusions instead of over 4 or 5. She said since I am young and healthy (I am not that young, 46). I did think it was weird but went with it. What else choice did i have. I don’t really know anything about this stuff and I was trying to trust my doctor. So it looks like i got a total of 110 grams of gammulux. I weigh about 125 pounds. I don’t know how to figure if this was enough or not.

    #99324

    yuehan
    Member

    The part about checked your vitals every 20 minutes is great. The reality, now, is that you have a lingering headache, right? In my case, too much too fast = headache every day for weeks.

    Everybody is different.

    How many grams for a loading dose for you? Back to algebra, somebody said.

    2g/kg over two days. Doesn’t matter how many days. Consider the total dose.

    2g/kg x (your weight in kg) = dose

    2g/kg x (56.6990 kg) = 113g

    As was pointed out by markens, unless you have direct pharmacy compounding you get rounded off, in this case to 110g total. 55 per day. The rate should be adjusted to, how do they say it? as tolerated or if tolerated, something like that.

    So far, so good. Except for your lingering symptoms.

    I could only give feedback that applies to me, and maybe only to me. Anything over 220 infusion rate is too fast. My body would not handle 55g in 3 hours. Maybe yours will.

    #99325

    chirpybirdy
    Member

    I think on my next infusion I will have them go more slowly. I did not know what was to be expected. I just thought, good, I am not getting sick feeling, no headache, no high blood pressure. So the quicker the better because I was thinking I could get in and out faster. But I now know more about IVIG and know faster is not better. So I will have them do it more slowly and hope I do not get the headache the next time. Good to know at least I got the right amount of IVIG just too fast. Thanks.

    #99328

    Anonymous

    Chirpy – Will your insurance company pay for you to get your IVIG done at home with a nurse? I think home care nurses would take better care of you than those at the infusion clinic. At home you are the only patient.

    There is a formula used to calculate how long your infusion should take. I Googled “formula used to calculate Gammunex infusion” and got this site:

    [url]http://www.druglib.com/druginfo/gamunex/indications_dosage/[/url]

    I found this text:

    “It is recommended that GAMUNEX® should initially be infused at a rate of 0.01 mL/kg per minute (1 mg/kg per minute) for the first 30 minutes. If well-tolerated, the rate may be gradually increased to a maximum of 0.08 mL/kg per minute (8 mg/kg per minute)….”

    Someone who is better at math than I am could probably figure out what the starting & max rates of your infusion should be. Yuehan?

    My daughter gets 20 grams of Gammaguard & it takes her 2 hours & 45 minutes. I cannot imagine getting double that in basically the same time frame. No wonder you haven’t been feeling well!

    Kelly

    #99332

    chirpybirdy
    Member

    Thanks for the info on calculating your rate Kelly. I am going to question my rate the next time I get an infusion. I don’t know when that will be. I have only had my first infusion set on April 7 and April 8. I have not seen my doctor since before my infusion. Then I only get to see the nurse next week for my follow up appointment. So I will ask the nurse about my next steps. When do I get my next infusion. How do I know I need another infusion? I also have list of side effects to go over with her. I just wish I was seeing the doctor and not her nurse. I am on a waiting list to see a CIDP specialist at the University of Minnesota but I can’t get into see him until June 30. So I am stuck seeing this other neurologist for now. I have to admit that most of my CIDP symptoms have gone away since the infusion. I have some mild burning sensation on the tops of my hands but my hands are not dropping things so much anymore. My feet are not tripping when I walk but sometimes still feel somewhat sludgy and tired. I still have mild tingling in my right foot but nothing like before. I sometimes dream that it was a wrong diagnosis and I really don’t have CIDP. But that isn’t the case I know. But days like this I feel almost normal like i did before CIDP.

    #99334

    Anonymous

    Chirpy – All of things you described are great! It means IVIG worked for you.

    You need to get on a maintenance schedule. They are different for each person. But you need to receive IVIG before you start to get worse. It doesn’t do ANY good to wait until symptoms come back.

    I have some suggestions for you regarding your infusions. Make contact with the infusion clinic before your next infusion to let them know you want the rate slowed down. Is it possible to ask to see the neuro instead of the nurse? Honestly, I think that’s crazy. The neuro should be doing a full neuro assessment.

    Keep a binder! I have one for Emily & it has helped me stay organized. EVERY time Emily gets an infusion I get a sticker with the lot number, etc off of the IVIG bottle. I keep those in my records. I also like to have a copy of the nurses notes (which should show temp, BP, heart rate). Our new home care company does not provide a copy…which is the only thing I don’t like about them.

    I also keep copies of all blood work, dr’s notes, rx’s, & a calendar listing IVIG dates & any new symptoms, etc. I HIGHLY recommend doing this. I think most of us CIDP moms have them for our kids.

    Kelly

    #99335

    yuehan
    Member

    [QUOTE=Emily's_mom]…
    “It is recommended that GAMUNEX® should initially be infused at a rate of 0.01 mL/kg per minute (1 mg/kg per minute) for the first 30 minutes. If well-tolerated, the rate may be gradually increased to a maximum of 0.08 mL/kg per minute (8 mg/kg per minute)….”…Kelly[/QUOTE]
    for both calculations the formula is the same-

    1. Recommended rate in ml (milli litres) note: milli =.001; kg= kilogram

    therefore, for a rate of .01ml/kg per minute we have

    .01ml/kg x (56.6990 kg) = .566990ml call it .57ml per minute

    Most rates may be per hour yielding .57 X 60 = 34.2ml per hour.

    for the maximum in ml, substituting .08ml for .01 gives

    .08ml/kg x (56.6990 kg) = 4.54ml per minute or, about 272ml per hour.

    For mg multiply by 100. But, I reckon I don’t know how many grams of solution are in a bottle of IG. Oh, I know I’m getting 55 grams in a 10% solution. But, I don’t know what the other 90% weighs. I’ll look on my box next infusion.

    Keeping it simple, for chirpy, the recommended start is 34 and the maximum is 272.

    Finally, I’m neither the doctor nor the infusion specialist. I’m just trying to plug numbers into a formula so whomever is interested can understand, not practice medicine.

    #99337

    Anonymous

    Yuehan – Thanks for doing the math. Just looking at it is making my head hurt. I am NOT joking when I say I don’t have a math brain. Anything beyond addition, subtraction, multiplication & division does not compute in my head. Emily had to teach me how to do fractions so I could help her with her homework, LOL.

    Kelly

    #99338

    rtolbert
    Member

    I also had high blood pressure after the infusions which I was told was common. It eventually returned to normal after about 4 months. I also experienced elevated heart rate of about 148 for a few months…needless to say I was hungry all the time and dropped weight like crazy…. it came back after everything returned to normal.

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