When is too much ivig too much?
AnonymousJuly 4, 2008 at 6:42 pm
With all of your posts, I am starting a new list of questions/comments to take to my neuro dr on Mon and I wondered if any of you had gotten more maintenance dose of ivig than what your weight indicated and how you reacted? I felt better for a few days after I had my last ivig-now my pain seems worse? Balance still better and overall since the brand was changed, my other problems are gone. It just seems that the ivig didn’t last long or maybe too much made things worse. Did the premeds and lots of water intake, but disappointed with the results. Maybe just having a bad day today, lost power for 3 days which added lots of stress and the anniversaries of my son’s death and late hubby’s birthday coming up in a couple of weeks and already thinking about that too. Sorry, unloading on you again. Emma
July 4, 2008 at 11:11 pm
Some people get loading doses plus solumedrol and cellcept near weekly. I know Gab111, Gabrielle gets quite a bit. Try to pm her, she is really nice, uplifting and a nurse as well. Most abstracts that I have read suggest the load of 2g/kg and 1g for maint. The older the patient, the less tolerant I have read. I read that children can get as much as 4 grams. I think I remember you mentioning high blood pressure as a reaction. That in conjunction with your lack of expected results might be a reason to maybe do the doses weekly, meaning instead of four days in a row, one day each week (maybe after an initial load, then follow up a week later, or every two weeks) It is all just trial and error. You have been on ivig fo 8 years already, so maybe another option to get full affect would be the ivig comb. with solumedrol or cell cept. Just wondering, were you dx with relapsing remmitting, or progressive? Good luck on Monday!
AnonymousJuly 5, 2008 at 12:26 am
If you respond like you seem to to IVIG, then you would be relapsing/remitting type of CIDP. The majority of people with progressive CIDP usually have symptoms come on much slower (over the course of years for some), & also do not respond very well to IVIG or PE. The fact that you have done fairly well on IVIG for 8 years now points toward the previous type.
I have come to believe after 6 years of severe CIDP that stress plays a large part in how we feel, especially pain. You do have some huge stressors going on right now, so I bet that is why you didn’t respond as well. Also, rest, getting enough sleep plays a large part in how we feel. For me everything is amplified if I don’t get at least 10-12 hours of sleep per day. I try to get it all at night, as I hate taking naps. But when I hit the “brick wall” during the day, I have no choice but to nap.
AnonymousJuly 5, 2008 at 11:45 am
No one knows how much is too much. It’s such an individual thing. Emily at about 40 lbs was getting 200 grams a month at one time. She responded well & didn’t have any issues. Thank goodness!
If you are experiencing pain it could be from being dehydrated, stress, or from the heat. Just get some rest & see if you feel better. I’m 100% certain the pain is not from the IVIG.
AnonymousJuly 5, 2008 at 8:48 pm
Just to respond so you don’t have to PM me, I am now getting IVIG 40 grams weekly with 125 mg of Solumedrol. And now take Cellcept 1000 mg twice a day. I will tell you that this is the third weekly dosing and I don’t feel like I declined like I usually do between doses! I’m crossing my fingers because I don’t want to jinx myself. But, like you, I would feel better and then sink back into the hole. So instead of a loading dose of 4 days in a row, I get one day every week. Good luck to you!!! Gabrielle
AnonymousJuly 5, 2008 at 9:32 pm
What dose you get often isn’t necessarily in line with what IVIG dose guidelines are…more about what your doctors’ philosophies are about dosing and treatment, IMHO.
I’ve read about instances where doctors seem sort of stingy in their dosing, and others generous. There is really a mystery about this all.
Some, most doctors will try to see if you can get by with few less not as stingy.
I for one get a good dose and am truly grateful. But, I would give up my dose for a child any day! Until more can be gotten.
I’d probably be a very grumpy person for a while, but I know there are priorities in this world.
As for pre-meds and preparations? Sometimes it all needs to be tweaked a bit until you find just the right combination of meds and hydration and also rate of the infusions. At times tho the tweaking does take a lot of trial and error.
That your balance was better, even for a few days IS improvement! Keep thinking positive in this respect and you will find the best way to get it and survive!
AnonymousJuly 6, 2008 at 11:30 pm
thank you Pam, Gabrielle, Kelly, and home again for your comments. So far I have to say my neuro doc is pretty generous on the ivig orders and the insurance has been approving it, and if the home care nurses have the best access to get the ivig over the hospital, I am hopeful that the gammagard will be continued. All of you are right about trial and error-so I will try this at home, but ask him about rate and get his thought on frequency so that there is no down time for me(good words from Kelly and Dawn). Thanks again everyone. Emma
AnonymousJuly 7, 2008 at 1:38 pm
your doc isn’t one of the stingy ones! Count your blessings thru all that happens!
Rate is soo related to how well you can tolerate the infusions. After all, you are having something ‘foreign’ being put into yourself. All said and done? Just be super cautious in keeping trak of what is all being put into you and at what rates. Sometimes, just taking an extra ten minutes to do the infusion can make all the difference for YOU!
I myself, find I can tolerate a fast acceleration of the rate but to a medium high one, and not as high as the max recommended…So I go up sooner in the rate, but stay at a less high rate for longer with out side effects. This is where each and every one of us is very DIFFERENT. AND, to be aware that there can and will be differences is crucial to your own infusion success or not. Further, some home services tend to ‘try’ and rush some infusions, BE VERY SURE that your doctor orders specific rates based on your past infusions in his orders. IF a nurse skips steps, that nurse could be on a carpet, should some bad effects occur. Usually, doc’s orders come with the delivery package of supplies and IVIG… READ them! Honestly, only you can protect yourself in this respect.
I can attest that different brands have effect or not with me. It’s a doctor preference or availability… and at times, I suspect an insurance thing.
I truly wish there were easy answers to all this, but what we have is complex, how it’s treated is even more complex and how we cope with it all is mind-boggling at times.
I hope that you start to MUCH feel better with it all and soon! At least, that ‘things’ don’t spread? That is a valid and reasonable fear. Hope always
AnonymousJuly 7, 2008 at 5:45 pm
Are there IVIG guideline some where on line? I have’nt found any. Josh recieved 2gm/kg loading dose twice and is now on 0.4gm/kg for 5 days every 4 weeks. Seems to be working well and we finally have no dip or decline prior to treatment. He also gets benadryl and solu-medrol as premeds. Are we talking about total dose ( total of all 5 days)?
July 7, 2008 at 6:34 pm
Great news Josh’s gram!!!! There is a protocol on the ninds site, National Institute Neurological Disorders. It gives the 2g/kg as a loading dose and 1g/kg as a maint dose. Kevin currently is doing the same thing as your grandson,2g/kg every 30 days. I am pretty sure you are saying .04g per day over 5 days, I think that is the same as 2g/.kg total. Look at his bottles and add them up. YOu are lucky as we are, not all docs do this even though it makes the most sense. Some go right to 1g/kg right after the first load. It is so silly, being that a full loading dose has a maximum life of 42 days. Hope things keep going well, and let me know if it is .04 per dat, or .04 total.
Dawn Kevies mom
AnonymousJuly 7, 2008 at 8:49 pm
Home again-I feel really dumb-am a nurse and never read my home chart till now after you mentioned it-didn’t even know it was with my supplies-my neuro has ordered ivig 0.5gm/kg. X 4 days every 2 weeks(so what I got was gammagard liquid 10%-45 grams every day. The ramping up of the infusion was what bothered me the first two days and I requested a slower rate-I do ok the first hour and then the rate goes to 270cc/hr. and the headache comes. My doc did not request a rate, but a copy of his letter to my gp indicates that he may increase my imuran to double(200mg a day)-was on that dose before but my white blood count and platelets got too low, but he is considering that instead of the rituximab that we discussed on my last visit. My appt. with him today got rescheduled for Wed., but I will definitely have him order a slower rate. The rest of the problems I have had, he feels, are a direct result of receiving Octogam. Prior to that I received Gamunex. According to his letter, I am described as physical exam:3/5 weakness of hip flexors, areflexic, balance quite off and unsteady, difficulty getting out of chairs—impression: cidp poor response to ivig and side effects to ivig made by Octogam, steroid myopathy, and painful neuropathy, poorly controlled. I am really discouraged, really hate these brick walls when you hit them-have been hitting this wall for several months, but I have been reading all of your posts and I will discuss the Solumedrol and Cellcept with him on Wed.(am a little concerned that I will have bad reactions to the SoluMedrol like I did to the oral prednisone), and I really know that there are a whole lot of people worse than me. After 8 years, I may not be much better, but I am no worse either, so I really need to focus on that and really hope and pray that someday they will find a better treatment and a cure for us cidp’ers. Thank you everyone for your input. Emma
AnonymousJuly 7, 2008 at 9:54 pm
AND You aren’t dumb! Plain and simple…this is one thing I’ve learned here and elsewhere is that the freaking pain can switch your brain functions off in the most peculiar directions….
Are you doing any pre-meds at all? Such as Tylenol or Benedryl? I have gone up and down the single and combo menu of the above and now chomp down Benedryls before infusion at home. I am just grateful that I can get off so easily in this respect. I am and DO have to be careful in the summer tho, as it’s soo easy to become dehydrated. I cheated this last time and had some gatorade two days before infusion to ‘help’ things along. It worked, I guess.
I’m not a ‘dosage’ expert. I do and can, as should you, look up the brand of IVIG you are getting and then web up ‘prescribing information’ Then read all 10-20 specifically designed to be incomprehensible pages…. The good news is tho, there are ‘800’ Telephone #’s with these that you can call. I have found them very helpful over the years. Truly.
Another aspect? IF your doc has ordered ‘Gammunex’ and you are being infused with ‘Octagam’? And, that you have a copy or ask your ordering doc about this? Well, the FDA says they cannot substitute without notifiying the DOC within 10 days of the substitution and then the doc has to notify you! That is why we keep those scraps of paper…they can be important in the long run. So…don’t go running off complaining? First get ‘copies’ of your last however many months of ‘orders’ and deliveries… Then go ask the doc.
In the meantime ask about pre-medications… It does make a real difference. Switching brands, if that is the case?, without your knowledge or consent, can be a sticky thing and YOU the patient should NOT be stuck in the ‘middle’, if you get my drift. I have been there and it’s a messy place to be for sure. But, it’s a place for the prescribing doc, the paying insurance company, the infusing company and the FDA to deal with….not your issue other than you’ve wasted time and IG for naught. I’ve got that tee shirt! Don’t worry there.
Blood tests? Never ever have tests unless they are the DAY before infusions! I have had soo many insurance rejections for tests that docs have had to re-do because they wanted Info= #’s, which are really truly skewed unless the day before infusions. That’s the closest to normal [?] I guess I can get and those #’s are often out in either left or right field at any given phase of the moon…I now have docs ‘trained’ for the day before and make sure it happens. They have to ‘experience’ the realities to believe it…I’ve many docs for many things …. gotta train them.
Hang in there and do NOT get discouraged! Stick to your guns and let them have it!
AnonymousJuly 8, 2008 at 12:27 am
Home again-and here I thought I had the only brain that acted up. Chronic pain can really screw up everything. I do premed now, as my home nurse has ordered with 2 Darvocet and 2 Benadryl and half way through the ivig I take a Motrin 800mg. That combination and slowing the IV down by another hour made for NO headache on day #3 and slight headache on day#4 that the Motrin relieved. I have to be careful with fluids becauce I get too puffy with an extra glass of water and then the nurse hasn’t been able to get my iv in right away. Trying to find what works best for me is sometimes maddening-I seem to get a good plan and then my body changes. Maybe that is more the nature of the beast with the remit-relapse form of cidp. Interesting piece of info about the ivig changes and the FDA-does that apply to hospital and home infusion both? This was my first ever home ivig last month – I don’t have any scraps of paper to document anything other than the hospital said they were giving me Octogam because they couldn’t get gamunex and then there was a short recall of 1000cc vacu bottles and when my doc saw me and called the pharmacy they related they could get gammogard and I was offered hospital or home infusion and chose home, but I was never informed of any ivig changes and my doc always just said “ivig” to me, but I can get the hospital records and start collecting those “scraps”. Re: ‘800’ nummbers, I will check that out. Re: lab-due to the drive to get to my doc, I usually have my lab drawn the same day, but my insurance co., other than my copay, has always paid-I will try to get them drawn the day before the ivig for a truer result. Thanks, am severely overloaded right now, but will do my best to hang in there. Emma
AnonymousJuly 8, 2008 at 2:28 am
Josh is getting 25gm a day for 5 days, he weighs 65 kg so I guess that is a total of 2gm/kg total. I am also happy with Josh’s progess and feel very blessed with the doctors he has had. He was diagnosed by his ped on the first visit for his balance and falling and was hospitalized immediately. The first dianosis was GBS. He has a great pediatric neuro.
PS Looking forward to meeting you in November at the Conference!
AnonymousJuly 8, 2008 at 5:48 pm
Holy cow Emma! 270 cc an hour????? I can’t go over 120-150 an hour. I had one nurse do that to me because she wanted to leave quickly and I had palpitations and a roaring headache. We didn’t even give that in the hospital, unless you were dying:) Well not really but close to it! That is a lot of fluid per hour. Good luck!!
AnonymousJuly 8, 2008 at 10:13 pm
H Gabrielle, I thought the same thing. I gave wide open iv’s during traumas in ER, but the rates seem way too excessive for me and my doc will change that when I see him tomorrow. I did feel that my nurse was pressed for time, but they can reassign a couple of patients for her, I was told. So will get that changed. A couple of ramps up and stay there-I will try to ask for 100-150cc/hr. like you and stick with the premeds and hydration and see if I can eliminate that headache business . All the N/V, arthragia, back and stomach pain are gone with the change to gammagard, so that’s better. I have a list of questions for him already for tomorrow, and I want a full exam-last time he only checked my hip flexors. He’s got his work cut out for him tomorrow:D Emma
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