glad it went well....
what you describe is how i feel and i chalk it up to a necessary evil to make me feel better the rest of the time.
i dont slow it down i feel like crap fast or slow so i just get it over and go home and have a couch day. the next day i am usually fine maybe a small headache but better than feeling like i have the flu daily!
some are better than others just hang in there....

Marilyn, your experience sounds identical to what I experience every month. Not so bad ... and ibuprofen helps the next day too.

Hi Marilyn, it does sound like they took you to a speed that's higher than your body can tolerate. In addition to watching out for normal reactions during an infusion like headache and rash and fever, also watch for heavy drowsiness that creeps through your whole body. I've found that to be another indication that the rate is higher than my body can tolerate. Someone else mentioned that to me, so I know that's not a symptom that's exclusive to me.

I think I've mentioned before that having an infusion speed too high can cause you problems for days or weeks afterwards, so it's worth fighting for lower rates...even if it means your infusion takes all day! Doctors and nurses just don't seem to get that not everyone can tolerate the recommended rate on the package.

I hope you have a speedy recovery! Keep us informed of how you're doing! :)

Hi Marilyn I am starting my first IVIG soon and if you read earlier discussions I am pretty worried, do you know how slow they started it at? I plan to ask for a slow rate, 100 at the highest but was wondering if you started even lower?

Lela, it seems pretty normal for them to start out anywhere from 25 to 50. I've been starting at 25 since I found out that my tolerance is low. After 30 minutes I have them raise it to 50, then after 2 hours I have them increase to 75, and I stay at that until it's finished. The entire infusion takes me about 8 hours, and it seems to be a reasonable compromise between me and the nurses.

Keep in mind that not only does the speed impact you, but the frequency of changes will too. Your body may not require it as slowly as I do, or it may require it to be slower, but even with keeping the speeds under 100 if they transition too quickly you could still end up with some extra side effects. My worst experience of all of my infusions was when the nurse sped up my normal transition time. I was happy when I left because I was done a whole hour earlier than usual, but I broke out in a really nasty rash from it later that day, and had hives every day for about a month afterwards.

Oh, I forgot to say that I get 200 ml (24 g) of IVIG, and the rates are in ml / hr. If they premedicate you with IV forms of meds, you should allow for at least another hour of infusion time for them to get you and the equipment ready to start the IVIG.

I think I found the problem. The dosing info says to start at .5mg/min then in () .005 ml/min which is .03 ml/hr with a max rate of .08ml/min which is 48ml/hr. I think they did the mg for the ml because I went through 2 200ml bottles in an hour 480 ml/hr. I think I will double check that next time before I start. He had in wrote in per min and I did not look at it closely to start with.

Also, I am having so tightness in my chest but no pain. Is that something you guys have experienced? My headace and fever finally responded to meds and I can function but even on both tylenol and advil I am still in pain.

Marilyn

Hey lady - to me? It sounds like they slammed that last bottle in you. What brand did you have (so sorry I forgot, was it Privigen)? At Kaiser, the pump alerts every 15 minutes to increase the speed. They know NOT to go over 100 ml/hr or Hiiiiiii YAH! Beatin some a$$! haha j/k. Seriously. I get seriously ill. Drink LOT AND LOTS of Gatorade (that helped me way more than water for the migraine).

Normal side effects are: low fever, mild achiness & headache, fatigue. Anything over that - check your rate or you can try a different brand. Theres quite a few. We here have had a WIDE variety. PB does great on Carimune - I got spinal tap migraines no matter how slow I went. Flebogamma - UGH - spinal migraines, incapacitated with pain for 4 days. Privigen - not too bad, migraine & fatigure - bed for 2 solid days. Gamunex -NADA (woot woot). Good luck. Drop a line and let us know how you are doing? You could be having some anxiety causing the tightness?

Also, on pre-meds - maybe someone else can chime in - I do oral and only have to wait 30 minutes. If she's on IV premeds, wouldn't she have to wait LESS time or am I just not waiting LONG enough?

It takes less time for the IV meds to kick in, but it takes about 20 minutes for them to administer my dose of Benadryl. On top of that they give me at the start, in-between each drug, and at the end. After they switch the Benadryl to Saline on me they give me an IV push of steroids. So that takes at least another 5 minutes. Usually they don't start the IVIG til I've been there an hour. Partly because they wait for the solution to mix.

I agree with you Kelli, it sounds like they went way too fast! Marilyn, you should probably take more Benadryl, and if your side effects get too bad or scare you, go to the hospital. Just best to be safe.

I hope you feel better soon!

Oh Kelli, I hate Carimmune...it's the only brand my infusion center carries...I'd switch in a heartbeat if I were able to. My doctor seems to be of the attitude/opinion that I can't go anywhere else for my infusions. I'll be on Hyzentra soon (I hope), and I can't wait to switch and be done w/ the infusion center. I don't think my reactions have been as bad as yours though. Hugs! :D

Um, is my doctor crazy for not being willing to consider pre-medicating before my first infusion?!? I got severe hives on my legs from a simply leg-waxing and had to have a prescription to get that resolved. I have a history of sever 2-3 day long migraines, and I already suffer from chronic back and leg pain {I take Darvocet regularly, and add Skelaxin on very bad days...} I also have allergies, and asthma that can flare up brilliantly whenever most inconvenient. Am I setting myself up for disaster here? He did tell me that I should notice a positive increase in my energy levels within hours after the first infusion. True?!? Right now, I cannot afford to miss even more work!!!!!!!!

Shoshana - Yes your doc is WAY OFF BASE! You should always premedicate! And no, you will not notice an increase in energy within a few hours - totally false! Most people are extremely fatigued after infusion. I always get my IV on my Friday off so I have the weekend to recover. I'm OK by Monday (not awesome, just ok, it is do-able).

Not sure what state you are in, but I work full time and I am covered under FMLA (I am lame, I don't know if that is us wide or just state wide). I am on intermittent disability - meaning I am legally covered up to 12 weeks a year and they can't fire me, well not for being sick. They can risk it and lie and say it's something else. I would check into it.

From what I could find on FMLA-it covers so long as you have worked with your current employer for at least one calendar year or more. Unless my EEOC complaint is resolved an my district re-hires me, I am not covered.
As for the doctor....the paperwork should be in this week to the insurance to begin the IvIg. Is it wise to switch doctors now? I just feel stuck. It doesn't sound so far like I can pick my infusion dates, either. He knows I am a teacher by profession-and I have cried my heart out to him this summer and pleaded for him to help me get some control over this illness in order to keep working. When we met this week and he went over the IvIg information, he offered right away to request SubQ for me so I could keep working and better conceal what was going on from anyone I work with. But I told him about my new 'inside' friends {my DS friends who are my sisters and brothers now :) -my 'outside' friends are wonderful, but don't suffer like we do} have said that SubQ is looked at as a last resort if you cannot tolerate IvIg. If I can do the IvIg on a Friday to begin with, I would feel better about trying without pre-medicating. He described it as several injections into the stomach. True?

No your physician is definitely not off base in not premedicating you for your first infusion. That is standard procedure. Other than Advil / Tylenol and Benadry or another antihistamine which are standard . The problem of using strong premedications during the first infusions is you'll never know if you need them or not. Most docs feel, how can I treat for side effect that I don't know what they are? I've heard of patients that have always had premedications that have worse side effects than the IViG they are getting.
Looking at what you said, if you got your last 200Ml in 25 minutes, that was a rate of 400 ML / HR... WAY WAY WAY to fast for a first infusion. If you physician put that in the orders he is wrong. If yo physician wrote your orders to go up to 400 ML / Hr, you need to talk with him. He was either careless or does not treat a large PIDD population. If they nurse took it that fast without orders she is wrong. It took me over 10 year to work up to that rate. I'd advise you to never go over 200 ml/Hr until you have a complete infusion with no side effects.
Marilyn, you should have a copy of your physician orders. You should know what speeds are in those orders and never allow the rates to go faster than the orders. They can always be slower, but never faster.
Keili. the Family Medical Leave Act is a federal law.

Thanks Mark I wasn't sure about the FMLA. I meant the Tylenol & Benadryl are standard - aren't they??

Shoshana - are you going to be doing subq or IVIG? Maybe I misunderstood your post. I thought he had suggested subq but you were opting for IVIG. IF THATS the case, no it is not like several shots in the stomach. IVIG is intravenous Immunglobulin - you have an IV in your arm, hand, where ever they can find a vein. Sorry about the FMLA :( it saved my job - literally.

He actually offered SubQ as my first option. That's when I mentioned what I've learned here about more doctors using that as a last resort-and don't most insurances balk at approving that right away? He did actually describe SubQ as the series of injections in the stomach, and they take place at the same time. After he described SubQ that way, that's when I said I'd try the IV version first.

Mark-I understood his lack of eagerness about premedications. It's just that when I get those migraines, I suffer so badly. Breathing literally makes me beg for death when I have been suffering for days without relief. The last time I went to the ER for one that was 4 days in, the doctor ordered an MRI, which showed nothing, and he became so rude and beligerent. He 'offered' to do a spinal tap to test for menengitis. When I asked him what the odds were that it was menengitis, he said slim, so I declined that test. He became hostile and made me sign out ADA! What an A@@!

It's just after the fiasco with the Venco IV, and I came so close to losing consciousness, and I literally could not feel my body or move, I am so afraid of possible reactions. When the reaction began, the IV nurses slowed the rate dramatically, yet the reaction peaked within minutes afterward. That hospital only kept me in an ER bed for an hour afterwards, and sent me home with just an RX for prednisone even though the urologist had told them to admit me. They sent me home with a picc in my arm and no way of taking care of it or antibiotics-over the 3-day 4th of July weekend. I ended up in the hospital for 3 days {a different branch in Orlando-I will NEVER go back to the Kissimmee branch again, even if I am dying!}. I have no one at home to help me after the infusion if I get really sick.

Maybe you guys and gals have some more suggestions about what I can do by myself before the infusion to prepare...I have read about drinking Gatorade-but it makes me upset at my stomach. What else? Foods to avoid before? I plan to take my mini-DVD player with me for an emotional distraction. Since I first learned a few years ago that this would happen, I had the image in my head to watch a comforting movie to distract me. The Lord of the Rings got me through the Iraq invasion {my husband was there-scary}, because once I put on a movie, I am the type to not turn it off for any reason, or look at the news...