IVIG day 4

You may not feel the effects of the IVIg right away. Some do, but most folks look back a couple of weeks down the road and say, “Wow, I feel a lot better now !!”

I hope this is the case for you.

Good luck

We did not get this advice right away, but it realy helps. DRINK DRINK DRINK
This helps your veins and it helps with headaches and it helps with the infusion. I cannot stress this. Drink juice or water or whatever you can get down. We are thinking of you.

Hi Florencia,
Your symptoms are all too familiar, I remember my son’s first loading dose. Anyway, since you are in a hospital, I assume that you are getting the proper pre-meds, but just in case, are you getting benadryl along w/the other meds they are giving you? Another option is to have solumedrol run through before the treatment, to help with side affects. EVERYONE reacts differently, but for my son, after the first 5 day loading dose, he did not get sick during infussion, but for days AFTER. Another question to ask is how high is the infussion rate, if it is administered too quickly, you can have reactions.

You mentioned the veins collapsing, if your doc concurrs that ivig DOES work for you and this is going to be a regular deal monthly, you may want to consider inquiring about a port. It makes thinks so much easier. One more thing I thought of, your body might not like that particular brand. Typically people seem to do well with Gammunex regarding reactions. my son did not, we use Gammaguard, liquid form. He still did suffer, but a little less. Once we were on loads for a while, I asked the doc if we could break the treatments up into bi-weekly sessions hoping to ward off his aseptic reactions and to my delight it worked. For about the last 8 months he has been pretty reaction free. Also, for my son, others may be different, if he is even slightly sick with cold like symptoms, he does still get a reaction, even on the bi-weekly schedule. I would say the pain is a seven if he is sick.
Good luck,
Dawn Kevies mom

BTW, is seraquill something you take regularly, or did they just give it to you for the headaches?
Dawn

Dawn seroquel is usually prescibed to stop racing brain and help people with bi-polar to sleep. My oldest daughter takes it and we have used it for Julie Ann to help her sleep.

Guskno,
My daughter has had this disease for 9 yrs. and one of the things that helps her hydration is to piggyback her IVIG with D-5. It also helps with her upset stomach. Saline is not considered compatable with IVIG. I hope this helps you.

I get headaches when the rate of transfusion is too fast. Anything above 100mL/hour and I’m going get a screaming headache. And we ramp it up slowly too – start with 25 mL/hour for one hour, then 50 mL/hour for an hour, then up to 100 mL/hour. You might ask your doctor to slow the rate down and see if that helps.

Seroquel is a major anti-psychotic drug prescribed only be psychiatrist. It is given to persons diagnosed with a serious psychotic illness. No one else for whatever reason should be taking it. It can be extremely dangerous and must be monitored carefully.
I post this as it isn’t a drug to be taken lightly.

[QUOTE=guskno]Hi everyone,
Today is my fourth day (of 5) of IVIG treatment. I have been given Talecris Immune Globulin Intavenous by Gamunex. I have to say that the the first day went smooth. No side effects or anthign strange. I did have 2 veins collapse and burn liek never before. The second day (Tuesday), I woke up with a headache. Not an awful one, but one that would not go away or weaken. I started the second treatment and was given vicodan for the headache. It still did not go away. On Wednesday, I woke up to a worse headache, not migraine material yet, but close. They gave me vicodin and immitrex and started dose #3. By the that evening, I was in agonizing pain. My head was splitting, I was nausaues, dizzy, and my whole body ached. I pleaded with the nurse to call the doctor because the neds I was being given were not doind the job. He called in a medicine called delatin (?), it’s in the morphine family and is to be taken every 4 hours. As soon as it went into my IV, I felt better! The sad part was it only lasted 2 hours. I then had to take vicodin to be able to cope with th e pain enough till the next dose of delatin was due. That went on though today, Thursday, Treatment #4. I am still having problems with my veins as they keep collapsing and burning. I have had 7 IV’s so fay for this treatment. Today, I still woke up sick. I forced myself out of bed and took a shower, changed my clothes, brushed my hair and teeth. When I was done with that, the 4th treatment started, but I was now laying on new bedsheets and all cleaned up. Since I still felt a little sick, I was given the delatin, I took a Serequal and I went to sleep. I woke up 2 hours later feeling like a new person! I don’t remember the last time I felt this good and awake! Sure, I have body aches from being in bed for so many days, but I feel myself getting back to normal (as normal as I can remember)! I can’t remember the last time I heard myself saying that I feel good!
The first 3 days were awful but today, I am seeing a light at the end of the tunnel! I will let you know how I am feeling tomorrow when I finish my treatment. Thanks for all your well wishes!:p[/QUOTE]
Hi Florencia,

My- I thought IVIG was not so dramatic in terms of side effects ( I’ve never had it).

This is disturbing I must say. Why is this the preferred treatment for you, may I ask ?

Best wishes

John in UK ( where its very cold and tedious and not anything as nice as Florida:) )

Well,
I am glad others brought up what serquel is used for, I thought I might be speaking out of place stating what it is typically prescribed for, as I have never heard of it being used for headaches. I also thought that one would have to take it regularly, not as needed. Again, is this something you take regularly or just for headaches?
Dawn Kevies mom

HI Florencia,

It was good to hear you made the insurance company do the right thing.
I am praying that the IVIG will work well for you and that the help and encouragement from those on this site are working also.
I am sending best wishes and healing prayers your way!

I would also like to add that vicodin usually does nothing for headaches.

If you are getting IVIG then you need to take Motrin or Tylenol AND Benadryl. If that doesn’t work then you can add Aleve and/or a very small dose of steroids. If you are on a loading dose, especially your first one, then you should be given these meds around the clock for the duration of your treatment (5 days) plus maybe one extra day for good measure.

Where are you getting your infusions at?

It seems, to me anyway, that you are not getting the very basic care associated with IVIG infusions.

Kelly

Hi I can so relate to all you are going through. This marks my 10th year of IVIG..in those years I have learnt a few things. I suffered with those headaches for years..often ending up in the hospital with possible strokes..tried every type of narcotic known to man. The solution has been quite simple. Before each infusion I get 1000 ml of saline..I get the same after each infusion. Being hydrated is key..but hard to drink lots when you feel like crap. I keep my rate at 75 and never go over..if I start to get a headache I lower it to 50. Yes this makes for long days but so worth it. I premed with prendisone, gravol ( anti nausuea) benadtyl and Oxycontin…I take these whether I feel I need them or not..prevention is key. I get this done as an out patient have learnt to never change the protocol no matter what nurse thinks she knows better. I also had a VAD port put in as my veins kept collapsing. The treatments are not a piece of cake by any means but soo much better than they use to be.
Hope some of this helped..adding the saline made a world of diffrence!!

Sonia

Sonia,

We have been doing this for 9 years and I have never thought to give my daughter saline before the IVIG. Thank you well will try it this weekend. How much oxy do you take?

Hope the Saline works for you..made HUGE difference for me. I take 5 mg of oxy every 4 to 6 hrs as needed. Need it more on days 4 and 5.
I can not imagine what it would be like to have to watch a child go through this..Blessings and strength to you.

Sonia

Ask your doc about prednisone for the headaches.

I get a bag of saline before the infusion/nurse mixing IVIG while saline drips. If I feel I need another bag of fluids at the end I get it or sometimes half a second bag. Yes, not good at drinking water after treatments so this helps me.

Infusions can be very tiring. Rest up afterward. Turn the phone ringer off. I put a sign on front door that sez Do Not Disturb if feeling really crummy.

My son had to premed also.

I agree saline before and after, and premedicate with benedryl, prednisone and Ryan had to take a migraine med called maxil before each treatment and then he would take the maxil every 4-6 hours after. If he did not premed he would be so sick for days.

so the key is to premedicate before each treatment.

The infusion center should have known that.

It is nice to know I can help others through my experience. The other thing I found helpful too is to have them warm up the bag of saline first. If I get the bag over an hour and it is cold then I freeze. This works so well that they have taken to warming up the saline routinely for every one. They just cover it with blankets in the blanket warmer for 15 mins before I get there. Makes it just that much more comfortable!Hope it helps

Sonia

I put Kevies bottles in my bra an hour before the nurse gets here:D
Dawn