I recall when I first was on IVIG, my blood pressure would spike, then drop exceedingly low. They checked it all the time during infusions. The doctors considered putting me on blood pressure medicine, then reasoned this may not be wise. This was because the blood pressure medicine would lower it, and my erratic reaction to the IVIG would drop it dangerously low.

They did have me on Benadryl (sp???) to offset this reaction. Actually, in the hospital, they put the Benadryl through my Pic Line. This put me to sleep like a baby in about a minute!

After a year of IVIG, my blood pressure is fine during infusions, but I still have to stay reasonably still. However, for about 8 months, I took Benadryl and laid down calmly to control the blood pressure. Even now, if I move around too much, my blood pressure spikes up again. The company I get my IVIG from recommends Benadryl, Tylenol and resting during the infusions + lots of water.

Good luck!!

Dennis

I’ve been getting my IVIG for about 15 months.

To start, they gave me a bag a day for 5 days in a row. About a month later, I was getting worse and they did the 5 day regiment again.

Then, they decided to give me it two days in a row every other week for about 3 months. They then spread this out to every three weeks from about Thanksgiving ’06 to May ’07. I tried to go every 4 weeks. This was not good, as I went back downhill.

So, I went back to every three weeks with the eventual addition of CellCept.

As you may read quite a bit in this forum, everybody is different and reacts differently to different meds.

I do encourage you to get a second opinion if you are not reasonably satisfied. I waited- much to my wife’s displeasure- for about a year to get a second opinion. This is when they switched my diagnosis from GBS to CIDP and started CellCept.

My thoughts and prayers are with you!

Dennis

By the way, my blood pressure would go from about 200/100 to down to 80/40 and back and forth like a yo-yo.

Hi Barb,

We have a homecare nurse that comes to our house who has been late because the previous patient had problems with high blood pressure. The first thing they should be doing is lowering the speed at which the med is infused. The slower the infusion rate the easier it is on your body. If that doesn’t work then they may discuss switching brands of IVIG.

Do they start your IVIG off slowly then gradually raise the speed?

In the hospital Emily would get very bad headaches if it was infused too quickly so I never let them go past 60. The infusion took 4 1/2 hours but it was worth it to not have to deal with the headache. Now that we do it at home the infusion takes about 2 hours 45 minutes and she VERY rarely has any reaction to it.

The nurse also told me that alot of the side effects are because it’s not mixed well. IVIG is VERY bubbly & the nurse needs to be very careful not to get too much air into it by bouncing it around too much.

You should also be talking with your dr’s about this. It is very serious. They may want to tweak your BP meds on infusion days (if that is possible).

Good luck.
Kelly

Barb –

Emi was originally dx’d with GBS – Miller Fisher variant. She had a relapse in March & was dx’d with CIDP officially in May after an EMG showed demylination. We have since switched neuro’s & this one is doing more testing & is saying she has “a relapsing sensorimotor neuropathy” until she gets more tests done.

After the first dose of IVIG Emi was much better. She still had a bit of foot drop but she was able to get around better than before the infusion. After the 2nd one she came home & was jumping on her bed. You couldn’t tell that anything was wrong with her except for her eye not being 100 %.

IVIG worked quickly for Emily. Her dr’s were shocked at how well she responded to it. When we first went to the hospital she could hardly walk, lift her arms or open her hands all the way. So yeah…I’d say she’s a quick responder to IVIG.

Now Emily does everything that a normal 5 year old kid does. She rides her bike, runs, jumps & I just taught her to roller skate. We’ve found an IVIG regimine that keeps her eye near perfect & we’re waiting for her eye to be stable for 1 year then the eye dr will consider surgery to repair it. Looking at Emily you can’t tell that anything is wrong with her, except that she runs slower than other kids & she does get tired out quickly at times. It’s amazing to me to see her now when just a little over a year ago she could hardly move.

I’m glad that the infusion went well & that the dr gave you some meds to help with your BP. You will be walking soon. Don’t give up hope.

Kelly

I never totally lost my ability to walk. I am 6’5″ with black hair. I joked that I looked like Frankenstein as I walked. I needed a walker to go more than a few steps for about 3 months and a wheelchair to go “long distances,” which was more than 30 feet.

By about 5-6 months, I quit using the walker; however, I still was very slow and methodic. I really had to think about lifting my foot and moving it. Standing up, I had to have assistance. Sitting up for more than a minute made me exhausted.

Now- a little over a year later, I can walk without strangers knowing the difference. I can jog slowly, but if I try to run, I look like a total goof. I do try to jog with my kids at school on occasion, but if I push it at all, I get number and get tired quickly.

Don’t push it too much. Read and know your body. Nobody can tell you your limits. As I was told a million times by my PT, too much and too little exercise are equally bad. And exercise at the beginning wasn’t a whole lot. Don’t get too frustrated, please.

I feel truly blessed I didn’t get worse, but certainly bad enough for my taste.

My prayers go to you!

Dennis

Hang in there Barb, I am still getting better and I just passed year 3 a few weeks ago.

Jerimy

When my daughter gets an infusion the home care nurse monitors her blood pressure every 15 minutes for the 1st hour then every 30 minutes for the next 1 1/2 hours. She said that if it does go up then we will need to slow the infusion rate. What may be happening to you is that on the 2nd day you need to have a slower infusion rate to keep that BP down. If it doesn’t happen then by the 3rd day it’s out of control.

I don’t know anything about BP meds but I would try slowing the infusion rate to see if that helps. What brand of IVIG do you get? Maybe you need a different one.

Good luck,
Kelly

I also have BP increases starting the day after my bi-weekly IVIg infusions. I have had chronic hypertension for many years, primarily from a pituitary tumor, but it was under control with the help of 5 separate BP meds (three taken 2x/day) until IVIg frequency was increased from every 4 weeks to every 2 weeks.

I get IV of Decadron, a powerful steroid, just before starting the infusion because I had such horrendous side effects (nausea and vomiting, migrane headaches, and fever for three days after my first infusion). My BP is fine all during the 7 hour infusions, but it starts to rise the day after and continues high for abut 7 days, going back to near normal with all the meds just in time for the next infusion. (I think the benedryl I also take to prevent side effects lowers my BP during the infusion.)

So I’m not sure if my BP increases are from the IVIg itself or from the IV decadron. Have appt. with my cardiologist next week to check it out.

Anyone else have a similar experience?

My BP has been pretty predictable in my case, raised somewhat (160/95 or so) when I report at the infusion center at 8 a.m. The nurse checks BP every half hour when she increases the infusion rate. It keeps going down. The best I ever did was 105/80 if I remember correctly. But then I’ve been on a beta blocker (Atenolol) since I had a heart bypass 8 years ago and since last year additionally I am taking an ACE inhibitor (Enalapril). They probably start kicking in since I take them in the morning.

I also usually listen to relaxing sounds on my iPod.

My experiemce in other words doeesn’t say much about influence of IVIG on PB, it’s just another example of a different experience.

Soapy,

My BP is high already but soars beginning about half way through the infusion (weekly) and stays elevated for about 48-60 hours post infusion. I have never been all that concerned about it because I am infusing 400ml of fluid which is increasing my overall fluid volume.

My lack of concern stems from the fact that for the first 18 months of CIDP I was on Plasmapheresis and had allot of low blood pressure episodes; the way the nurses always “fixed me up” was to push a 1000ml bolus of saline and that usually did the trick. I say usually because I remember a few times when they pushed 1500ml or even 2000ml. Anyway, that always increased my blood pressure so I have always figured that the IVIG infusion is adding fluid volume and therefore increasing blood pressure.

Of course, that’s just my rationalization 😀