High Blood Pressure post IVIG infusion
April 25, 2011 at 9:28 am
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.
AnonymousApril 25, 2011 at 2:26 pm
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?
AnonymousApril 25, 2011 at 11:16 pm
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!
April 26, 2011 at 9:08 am
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?
AnonymousApril 26, 2011 at 9:40 am
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.
AnonymousApril 26, 2011 at 9:44 am
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?
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.
April 26, 2011 at 9:49 am
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.
AnonymousApril 26, 2011 at 10:29 am
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.
April 26, 2011 at 11:40 am
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.
AnonymousApril 26, 2011 at 2:54 pm
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:
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!
April 26, 2011 at 3:01 pm
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.
AnonymousApril 26, 2011 at 3:10 pm
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.
AnonymousApril 26, 2011 at 4:53 pm
“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.
AnonymousApril 26, 2011 at 5:09 pm
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.
AnonymousApril 26, 2011 at 6:09 pm
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.
AnonymousApril 26, 2011 at 11:46 pm
My neuro will not have the infusion rate above “90”. My 50 grams takes 6 1/2 hours. The nurse starts the infusion at “25” for 30 minutes than up to “50” for 30 minutes. I can’t even comprehend any neuro allowing an infusion rate at “300”–I just can’t. No matter your age.To give you 3 doses in two days has me wondering??
Emily’s Mom is right–keep your own records. This is so helpful for later on. You’re a new IVIG patient and need to see the doctor not the nurse-no way around that.
AnonymousApril 27, 2011 at 10:07 am
When I first started receiving IVIG I would commence with a rate of 1g per hour, working up to a maximum of 10g per hour. I received a total of 40g. Now, I receive a total of 80g; we start at 10g per hour and work up to 40g. I receive the entire 80g in about 3 1/2 hours. I’ll admit, it does seem a bit fast.
April 28, 2011 at 9:12 am
I am so upset. My symptoms seem to be returning since my IVIG infusion. I had it exactly 3 weeks ago. Most of my symptoms almost completely went away and I felt almost “normal” for the past two weeks. But yesterday the tingling and numbness came back in my right foot and my hands feel weird again. I was really hoping I would get more than 3 weeks out of the treatment. I guess I was just dreaming. Now I have to try and get another infusion set up but I don’t have an appointment with the ‘nurse’ until Thursday of next week. This whole CIDP thing is getting me so down. I just don’t have the time in my life to be sick. My daughter has been home from school the past three days sick so I have had to use two of my precious sick days. I only get 4 sick days a year. Now every time I need an infusion I have to use my precious vacation days. I just hate this whole thing and am not coping very well. I feel horrible most of the time because of this darn headache that won’t go away and I also feel foggy and light headed most of the time. Now adding the numb foot and more anxiety to the mix and I just can’t sleep or concentrate on anything. I hope things get better some day.
AnonymousApril 28, 2011 at 11:31 am
Chirpy – You need to call your neuro’s office & tell them your symptoms have come back. You will need another loading dose & then you will need a maintenance dose before the 3 week mark.
I may have mentioned this before but can you get home care for your infusions? They would be able to work it out so you could have them on the weekend or after you get out of work.
April 28, 2011 at 11:50 am
How do you find places that do at home or weekend infusions? My infusion clinic only does M-F 8-4 PM so I have to keep taking time off for the infusions and I don’t have much time left for the year and it is only April.
AnonymousApril 28, 2011 at 3:06 pm
I know it’s easier said than done, but you need to stay as calm and focused as possible. I’m not saying you can’t break down once in awhile — I still do, and sometimes you just have to let it all out. But you also are responsible for your own health, come what may in the other aspects of your life. And look at it this way: if you don’t take care of yourself, those other aspects won’t work anyway.
Contact your doctor immediately and explain what is going on. It sounds like you need the IVIG more often. I get fairly large amounts every two weeks.
My infusions are done in my home on Saturday mornings by Home Nursing. I have a dedicated Infusion Nurse/Case Manager who has been working with me for nearly a year. In the past, we have done infusions in the evenings and on Sundays also. I am a busy trial lawyer and we have always been able to work around my crazy schedule. Check to see if your insurance will cover the in-home IVIG. Also, you can ask your neurologist to indicate right on your IVIG prescription that it is to be infused “in home”. It can’t hurt.
I know you are early into your treatment, but at some point you can also consider SubQ. It takes longer and can be challenging, but it does give you greater flexibility as to the timing of your infusions.
AnonymousApril 28, 2011 at 5:13 pm
There are a few ways to get set up with home care.
You can call your insurance company & ask them if your plan covers it. Then you can call around to different home care companies (find them via Google or the yellow pages) & ask if they do IVIG infusion.
You can call your dr’s office & ask if they can set it up for you.
Or you can call the hospital you were in (I’m assuming you were hospitalized at some point during your CIDP journey) and ask to speak with the patient advocate or social worker. They should have a list of home care companies in the area that specialize in IVIG infusion. They may even be able to do all of the work for you to set it up.
AnonymousApril 28, 2011 at 7:05 pm
To find Infusion Providers click here:
In fact, the GBS-CIDP Foundation has the information. Go to gbs-cidp.org; click on GBS-CIDP Foundation tab near the top 1/3 of the page; In the drop down box click on Patient Resources.
I have used Accredo, they are listed there. I have also used Coram, they are not listed there.
AnonymousApril 28, 2011 at 7:46 pm
There are many infusion nurses who do them on weekends or late evening like Fridays because the patient has to work. I know of one nurse who spends the night as the infusion goes on so patient won’t miss work and keep her medical insurance. That has turned out to be a blessing as they became good friends and the infusion gets done. Many adults need infusions at different times in order to keep their job/medical insurance.
My neurologist’s staff nurse contacted a infusion nursing agency that does my home health IVIG. The plus for me is having my infusions tailored to my needs and I’m at home.
It may be helpful for your neurologist to write a letter for your employer.
Keep us posted on what happening. This forum has great info to help with CIDP.
AnonymousApril 29, 2011 at 12:09 am
I was also getting bad headache, nausea etc after IVIG.
This is what works for me. Make sure you drink lots for 2 days before so you are very hydrated. You also have to drink lots for 2-3 daysAFTER IVIG to flush IVIG through.
I take Tylenol and Benadryl every 4 hours the day of my IVIG and I take it for 2 days after IVIG. This has stopped the headache and I can function much better.
I get 90 grams in 1 day once a month. We start at 60grams for 15 minutes, check Blood presure, temp, and pulse.
If OK we bump the rate to 100. After another 30 minutes we check BP,pulse and temp again. Then we bump up to 130 for the rest of the day. Several times we monitor BP,pulse and temp.
Hope this helps,
May 2, 2011 at 9:49 am
Thank you for the information on IVIG at home. I will look into it. I have only had one treatment almost 4 weeks ago. I have a follow up with my nurse on Thursday to discuss how I did on my treatment and I guess how to move forward. It is weird. I had symptoms return last week. My feet were starting to feel numb again up to the knees. The motor feeling also returned in my feet and tingling. I was very upset thinking I only got three weeks relief from my IVIG. But my nurse said not to come into my appointment early, to keep the apointment I have on May 5. Weird thing is the symptoms went away again after about 2 days. I feel good again. Feet have no numbness, tingling or motor vibration again. Can the symptoms come and go like that? I just don’t know how to proceed. Do I wait to get more IVIG until I am feeling miserable and having symptoms again or do I get on a schedule every 3 or 4 weeks no matter what I am feeling. Confused to say the least!
AnonymousMay 2, 2011 at 2:34 pm
You should NEVER wait until your symptoms come back. The demyelination process starts before you have symptoms. If you wait then you are just causing more & more damage to your nerves.
It is ideal to be on a maintenance dose that keeps the attacks at bay. This allows for maximum healing.
Is it possible you over did it the day before you felt symptoms return?
May 2, 2011 at 2:40 pm
Yes, I was very stressed that day and the day before. My 7 year old daughter was home sick from school for three days. My husband was out of town in Chicago for business for that week. I was stressing because I did not know how I would stay home with her without using up all my precious sick time I need for my infusions. So it was stressful that whole week my husband was gone trying to juggle work and a sick child. After my stress load evened out the symptoms seemed to subside. Can stress bring on an attack or symptoms?
AnonymousMay 3, 2011 at 10:32 am
Kelly is right….anxiety can trigger a lot of similar symptoms. Chirpybirdy, I had the flu vaccine and thought I had CIDP for about 6 months or so. There is a lot of overlap with a lot of autoimmune diseases and symptoms. Fibromyalgia can cause numbness, ME/CFS, and a whole host of other diseases. I have a lot of weird symptoms and have had them for a year and a half. Anxiety and stress definitely make my symptoms worse so you have to try to be calm and ride it out. I work full time and have a 3 and 5 year old. It is tough to be fatigued and in pain and have weird symptoms all the time. I go talk to a therapist once a week to help. I highly recommend this. There are also anti-anxiety drugs that can help, like Xanax and Klonopin. (?). Good luck.
May 3, 2011 at 10:48 am
Jessicah, Did you get tested for CIDP after the flu vaccine? I also came down with CIDP 10 days after the H1N1 vaccine. But it could not have been anxiety because my EMC and Nerve tests showed results consistant with moderate demyelinating. But yes, since being diagnosed with CIDP my anxiety has gone up. And I do thing the symptoms last week might have been caused by stress and anxiety because they are gone now. Since my IVIG treatment 4 weeks ago I feel good. Most of my CIDP symptoms have vanished. I ALMOST feel normal like before i was diagnosed. It makes me think they wrongly diagnosed me with CIDP. But i think i am just lucky that the IVIG treatment worked and helped me. The EMC test showing demyelinating didn’t come from anxiety. I also have weird burning sensation on the top of my hands. But happy with my IVIG treatment results. If and when my CIDP gets worse and my anxiety returns I will probably seek out help to deal with the anxiety and depression. But feelilng ok right now.
AnonymousMay 3, 2011 at 4:43 pm
I have several EMG/NCV’s that were “normal,” but no spinal tap. I saw 6 neurologists. I had numbness, tingling, burning, skin hypersensitivity (like when you are shaving). My arms would go numb when I was sleeping, my tongue even went numb. Muscle twitches, which I still have. I was not diagnosed with CIDP, possible GBS/nerve inflammation. I think that I had mild GBS, but now due to continued inflammation in my body, I now have a lot of joint pain, fatigues, etc. I am now seeing a rheumatologist. Basically, noone knows why I have these symptoms, and all they want to do is give me drugs for the symptoms. I just went to a naturopath today and am going to start on this path (changing diet, etc) to see if this helps. Doctors do not have a clue what to do about vaccine injuries. I hope that you get relief from the IVIG. I never had any treatment in the beginning, and I begged for it. I think I might not still have problems now had I had IVIG, but I was still walking around and functioning even though I lost my reflexes and couldn’t lift my arms over my head. There are a lot of us unfortunately who have had vaccine injuries. I wish I knew about the potential dangers of the flu shot and I would NEVER have gotten it, but that is water under the bridge now.
May 4, 2011 at 8:33 am
Maybe you should have them do the spinal tap to look for elevated protein in your spinal fluid? Maybe you do have CIDP and you just were never diagnosed correctly. I know that the IVIG really helped me. I was progressing downward with numbness and weak legs and hands. After the IVIG i hardly notice i have CIDP. I do have some sore legs if I walk a while and I still have stiff knees at times but really feel pretty good. I can’t imagine where I would have progressed to if I had not gotten the IVIG. Plus I was getting very depressed and lots of anxiety since I had no control over what was happening to me. I think you should seek a new neurologist. I have an appointment in two weeks with a specialist in CIDP at the University of MN. I hope he has only good things for me. Good luck.
AnonymousMay 4, 2011 at 11:23 am
The last neuro that I saw was Dr. Driss at Northwestern in Chicago. They do Stem Cell Transplants here for CIDP patients. (Dr. Burt). I think that if she thought that I had CIDP, she would have recommended the spinal tap or diagnosed this, so I am pretty sure that this is not my diagnosis. The NW peripheral neuropathy clinic is one of the best. Numbness and weakness are not my main issues anymore. It is chronic joint pain, arthritis and fatigue. I am going to go to the U of Miami, to the CFS/ME clinic down there to see if they can help. They have a lot of experience in dealing with vaccine injuries and such. It sounds like the IVIG is working for you and you are on the right track. If not, you should google Chronic Fatigue Syndrome/ME. There are a lot of the same symptoms. 2 of us that got the H1N1 vaccine have all the symptoms.
AnonymousMay 5, 2011 at 7:44 pm
For each of the 3 months after monthly infusions, I’d had blood drawn to assess the impact on my immune levels from the infusions. These are normally done at first a week after the infusion, then right before the subsequent infusions. WHY?
To determine if your inflammation #’s are going down in the rite areas.
Also, know that MANY insurance companies require such documentation to support continued infusions! Given the expense of the stuff, you certainly can explain why it all must be done? Tho a spinal assay now mite be up for discussion now that you are ON IVIG. Don’t know why that neuro didn’t do it before…
kelly, rhonda and all are right about the fact that IT WORKED! Now some medical ‘professional’ has to ‘justify’ your continued use!
And, for starters? Normally it IS four weeks. Believe me, My priorities in life revolve around my IVIG schedule! At times? Makes me feel like a ‘pseudo-vampire’!
Good luck and keep faith! Don’t give up on getting that extra ‘second opinion’! It only can reinforce what you KNOW to be what helps!
Worked for me! Hope it does truly for you.
AnonymousJune 4, 2011 at 12:25 pm
My first IVIG was in Dec.2010. Had a problem at that time, blood pressure went up, the IVIG was then slowed down. I have IVIG every 3 weeks and pressure seems to be doing ok. I am new to all of this. Some days like today I feel very week, I am walking with a cane,but it is very tiring and very slow and can only go a short distance . I ride the electric carts for grocery shopping. I started out with 60 g for 8 IVIG and now doing 4 @ 25g then I go back to my neuro, Wondering what he will have for me next?? Improvement is so very slow.
I have CIDP dio in 12-2010.
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