IVIG/treatment and symptoms

bny, would you mind explaining how many grams you got for your load over how many days and then how far apart the maint doses were right away? If you don’t mind, what is your weight? So 48g every three weeks may not be enough. Or you might respond better once a week with the amount equal to a load so lets just say a load is 100 grams a month, ask to get 25 one day a week. You may just need to do loads and frequency may be more important to you than having it so far apart.

I am going to be honest buny, I am having trouble following everything on the site. Plus alot going on at home, but this is what I think I remember. I think I figured out that a load was 114 grams for you based on your 125lb figure. The first time right after your load was a maint dose, the increased amount 48g every three weeks is almost a load. You asked me why the first dose was so pronounced, that is because you got it all at once and that is what your body required. To me it sounds like you should ask for a load again, maybe a few of them so that your body can recover. We did loads for a year before we gradually reduced by 10 gram intervals to a maint dose. Another potential problem is the time between your next dose. Much literature suggests frequency is more important than volume. If it were me, since the docs way is obviously not working, I would ask him if he could at the very least allow you to have 3 loads every 4-6 weeks, (by your description of your situation I think it should be every four weeks) then decrease by ten grams and split it up. So that would be something like on the fourth month of the load schedule go from 114 grams to 104 grams…given over two weeks for two days. So….52 grams over two days which would be 26 grams two days in a row, wait two weeks and do it again, the next month decrease by ten grams again, so 94 grams spilt over 2 weeks of the month, 47 grams over two days (unless you could handle the 47 in one day) wait two weeks and do the other 47. Decrease by ten grams until you get to 57 grams over the whole month every two weeks do 29 every two weeks. I don’t think I would let him go any lower tan that. That is about a maint. dose, just that it is over 30 days not the full 42 full life. It seems that 42 days is NOT a full life for you based on your statements of weakness. If you still don’t feel good, you may just need loads all of the time to feel good and repair. I know you are busy and work, but if you keep getting worse, the damage could be permanent and then you will be of no use to your family. I think I mentioned to you about the fanny pack, if you think about it, once you did the initial loads of four days in a row doing a load over a month one day a week would be less intrussive time wise to you and your family. It would be 29 grams once a week. You could do the fanny pack, do laundry cook dinner, be with the baby all the things you have to do. It would probably only take three hours to do 29 grams. I know it seems overwhelming and I know it sucks to have this intrussion in your life, but you have to get better. Moms are the rock of the family. I know you can get through this, it takes time and there is anger. We were mad for about the first 18 months, now it is no big deal, something we know we have to do. We actually even have fun with our nurse and it has opened up our lives and hearts in so many other ways. We are the stronger for it.

bny, it is not that you are posting all over the place, it is that I have alot going on (going back to oncologist after 12 years, I think something is up, hopefully not) plus I am having trouble getting used to the new site. It used to be easier to reference a previous post. I just have to get used to it. About talking to your doc to change the treatment, if you explain in detail through a journal with documentation that shows when you feel better and when you feel worse, he should be able to see that additional treatments might be in order. It is a big trial and error process. He did start with the standard protocol, now he just has to figure out what your body considers standard protocol for you.

I agree ALS is a distant dx, nothing to worry about now, you would not have responded to the ivig if it were ALS. We use a company called Coram for our at home infussion. They are nation wide. If you have BCBS for insurance, they are actually the preferred provider. We could not do it without home infussions. I don’t know what is going to happen when college starts
(three years, hopefully with the grace of God we will be in remission by then!) You mentioned being a hard stick, eventually you might have to consider a port, it made things easier for us, plus he was only 9 years old when we started.

Dawn–i saw an article in the ivig living magazine of how they are giving ivig to college students at their campus. I hope remission is in store before that time, but if not then something to consider 🙂
Bny—Sorry to hear of all you are going through, hope things get easier for you soon. the ivig thing is so hard to figure out. I have been at it for 2 and a half years and still not there yet. I went off it in Nov. tried the PE in Jan and now just a few days ago, after 3 months without it i went in for a loading dose. What i realized is that although i didnt feel myself getting significantly better on the ivig—I did get worse without it. I guess i didnt realize how much better it made me feel until i went without it. I am also the breadwinner for my family and i carry my health insurance—so NEED to work. I am going to try a loading dose every 6 weeks (2gm/kg). I was going to try this previously, then when i went to mayo dr dyck suggested 0.4 gms weekly for 16 wks. I did this, but if the every 6 weeks works the same it will be much easier.
But anyway, yes dawn is right—it’s trial and error, not expecting too much from every dose–i guess even ,not getting worse is a step in the right direction. I have anthem BCBS and so far they have not given me any difficulty with the ivig. At least you know the ivig worked for you—so that’s good, just need to get on a good schedule with it now.

Yes it is working 🙂 i felt myself declining in the three months without anything–even the plasma X/C didnt really give me any significant changes. for some reason this ivig worked better than any others—maybe it was because i had the PE a month prior ?? IDK—can’t seem to make sense of this diseaes! i think i will most likely just stick with the ivig–the loading dose every 6 weeks for now. i see my dr in a few weeks and am going to see if i can be on a somewhat flexible ivig schedule—just in case the symptoms kick in before 6 weeks. My symptoms are hard to determine, basically when i decline it starts as numbness increase, when i overdo it it increases numbness–which goes away eventually and if im stressed it increases numbness…so needless to say its difficult to tell when im truely getting worse. i try to give treatments and flexuations in symptoms a little time to differentiate.
anyway….i feel better now than i have since november (thats when i had my last ivig) i noticed when i was walking out of my sons sports award ceremony tonight that i was walking along and talking with a group of people and i wasnt struggling to keep up with then. i have also been having a lot of sensory stuff–twitching, vibrations, minor pain where there was just numbness so i think that’s a good thing.
Im glad kelly is back on here and giving you some info—she has been at this a long time and as some good info. No matter how much i hate having this crap–im thankful every day that it is me and not one of my children–that would be very difficult 🙁
i had never heard of ivig,cidp and barely even knew much about the nerves at all before getting this–it is amazing how quickly life can change.
Dont mess around with the whole vision thing—-definitely keep up on that—maybe a trip to mayo for you??? the good thing is they will get all your testing done in a week or so and possibly get you some answers. or if minnesota is too far there have been some other reputable places mentioned on here. mayo was good about getting all my tests condensed into 4 days—they were just 4 long busy days going from test to test.
yes i would LOVE improvement too!!! i really want to run, and ski again—-but at this point i will settle for a somewhat normal walk and to be able to stand in one spot without stumbling, i have horrible balance right now.

I know you have been through a lot and more testing is definitely not fun. But….you are so young and where you havent had this very long—- with an aggressive treatment plan maybe you can get back close to where you were. Plus you haven’t got an actual diagnosis yet, have you? It just seems you have a lot of variants with the vision involvement, autonomic, and etc. I think of how stressed i am with just my feet and lower leg involvment and can’t imagine what you are going through with all you are dealing with.
It is sad about your classmate—-but really take care of yourself, don’t even think about settling on a wheelchair!!! if i’ve learned anything with this disease it is that we have to advocate for ourselves…..As soon as we walk out of the Drs door they have forgotten about us and our concerns and are onto the next patient. so be pushy if you need to be.

i really hate that we have no private messaging anymore 🙁 and the only way to converse is through the posts. Really wish they would get this feature back on the forum and the search feature…….i miss that too

I also miss private messages and am having a hard time getting around in this site. I find it very hard to keep up with topics. Not user friendly but do appreciate that we have something to help each other. Without this forum I would be a mess!

I dont think they forgot—i think they just didn’t include that or the search feature when they redid the forum??? no idea why??
yes i have muscle loss in my calves, and both my calves are smaller than pre-cidp. i used to hate my calves because they were too muscular —-now i will never complain again if they come back, actually if i get to where i can raise up on my toes, i will work them to make them muscular again!!!
That is good that you got the strength in your hands back. hopefully you will get it all back and your son was so young during this that he will never remember you having cidp 🙂

Bny, you mentioned calling doc when you feel weakness. Once you feel it, the demylienation has started long before that. That is why it is important to stay on top. Regarding the muscle atrophy, if the demylienation was stopped with enough ivig or what ever protocol may work best for you, the message from the brain to make the nerves respond in the hand would in turn work the muscles. Just a simple way to explain it. But essentially it sounds like you are not having things completeley halted. As well, the hands will be the last to repair. The repair starts from the feet up, a mm a day. But if another relapse or the last relapse has not completely been stopped the healing does not start. Hence the continuous fatigue. Ok well I guess I am going to be whinny, so forwarned is fair warned. The oncologist appointment did not go so good. I actually was hoping I was just being an overcautious hypochondriac, but as soon as he looked at the area, he said oh yes I see and got out the vinegar solution and the “suspicious” areas were visible. Scientifically speaking it is pretty amazing how the vinegar has the chemical reaction with the cancerous cell change. So, he took two nickel sized biopsies and said make an appointment for two weeks so we can discuss what we are going to do next. Nice way to leave me hanging, so we can discuss another big surgery because you already know the margins are not going to be clean again or come back in two weeks and we will discuss the results whatever they may be. He didn’t use the verbage discuss the results he said talk about what we were going to do. I didn’t really feel like asking and I was already crying like a big baby because all I could think about is if I die, who will insure that My sons will have someone manage their illnesses? My husband is highly intellectual scientificlly but from an engineering point of view, not medically. He has no clue about either kids illness’s. Not to mention the area hurts like ….. not an easy place to heal. Ok I’m done whinning.

Dawn—so sorry to hear of all you are going through 🙁 Don’t ever feel bad about whining here—I know I’ve certainly done my share!! that’s what we are here for. You are dealing with a lot. what type of cancer are they suspecting–sorry you probably have it on here already, but the way this new forum is set up it’s hard to look back and find things. On the old board I would have pmed this to you–talk about whining–huh!!!! Anyway i hope things turn around for you, I didnt realize you had two children dealing with an illness—you have every reason to whine………thinking of you and hope things get better 🙂

I have the nmbness/parathesia in my feet and it increases with exercise. There was a post not too long ago where somene asked about increased parathesia with exercise and it seemed pretty common.
In my case the cidp affects mainly my lower legs/ankles and it’s my feet that get the increase parathesia. Maybe it was the exercise from walking around the store, and in your case where it’s proximal cidp that’s why it started in your mid trunk???
I had read in a post quite a while ago that parathesia brought on by exercise usually resolves with time and rest, where that from relapse or progression does not. Keep in mind these are not Dr statements–just things i have read on here. Definitely if you feel you are getting worse then call your Dr

Thanks–yes Im doing okay. I had a loading dose of ivig 2 weeks ago, It helped a lot with the fatigue, so ive been taking advantage of it and trying to get some good exercise sessions in. I can’t really due anything for my calves and feet due to the neurpathy there, but I have been focusing on strengthening my quads, core muscles, and upper body. Of coarse the increased exercise causes me increased numbness–can’t win–. Im glad your ivig is working well- 🙂 I will keep my fingers crossed for you too—–I’d cross my toes too if I could—lol. you know what would be really great for this forum (besides getting pm’s and search back) LIVE CHAT!!! wouldnt that be nice???

no, I am not on any medication other than IVIG and some vitamins/supplements i take on my own. I thought the lyrica was for pain?? i don’t have any pain, just the numbness/parathesia. It doesnt keep me awake at night, even though it does increase as soon as i get into bed.
Fortunately i have a home gym in my basement so im not stumbling around the public gym in front of everyone. My balance isnt very good any more—standing one spot doing exercises with dumbells, i sometimes stumble around. im sure if i was in the public gym, they would think i was drunk–lol.
Did you really mean that you were pregnant 7 times in a row!!!! or was that a type o—-cuz if so you must be VERY busy!!
I get tired the following day if i overdo it too…but i havent noticed it makes me weaker, just more fatigued. So i am trying to really push myself even when feeling tired. I know some say it isnt good, but so far i feel better after pushing myself, the ivig is helping with the fatigue.
My biggest problem is with my feet and ankles being weak, my poor knees absorb all the impact when going on walks, so who knows how long they will hold out. I have had knee surgery in one a while ago due to a ski injury—way before cidp.

fingers crossed for you 🙂 I dont know if it has a cumulative effect? I think every infusion is different–i would get one where i would feel great after, then another when id wonder if they just pumped me full of saline??
yes sounds like your body has gone thrrough a lot—hopefully the ivig will turn things around for you

april 5 & 6th im trying the loading dose at 6 week intervals for now to see how that works. My last infusion was the best one ever—i was thinking maybe it had something to do with the PE, it was the first infusion since my pe in january. i don’t usually get ill or any rashes after the ivig. hmmm.. i just had a thought that maybe the donors of my next ivig would dislike lattes and chocolate…..and that might be passed on to me—-lol

Dawn Kevies Mom- when you mention “in a fanny pack” is this IVIG via iv infusion or sub q? When I do my infusion I am not mobile, as I am connected to a pole with a big and heavy pump.I certainly can’t whisk around and cook or do laundry – I am TRAPPED for 6-7 hours (I can’t go faster than 50, as I have horrible side effects: chest pressure, headaches that land me in the ER, etc.).

Dawn Kevies Mom- when you mention \”in a fanny pack\” is this IVIG via iv infusion or sub q?
When I do my infusion I am not mobile, as I am connected to an iv pole with a big and heavy infusion pump.I certainly can\’t whisk around and cook or do laundry – I am TRAPPED for 6-7 hours (I can\’t go faster than 50, as I have horrible side effects: chest pressure, headaches that land me in the ER, etc.).
I work as well (and maintain the insurance ); how do you handle the post infusion brain fog/migraine/headache the day after your infusion?

PattyO do you pre-medicate with benedryl and tylenol? plus drink tons of water before, during and after? I also drink a latte (caffeine) while getting my infusion and find that helps 🙂 The one time i did have a headache, i found out the nurse gave me 50 mg’s of benedryl instead of 25mg’s–i think it was the benedryl that gave me the brain fog/headache.

The fanny pack is for iv infussion. It is mobile. The only thing different is that the ivig has to be pooled into a bag as opposed to getting it direclty from the bottles. My one friend even goes to the mall with her nurse!

Regarding the headaches, have you ever tried switching brands? You obviously already infuse slowly, so that is good. Honestly, the pre-meds never even put a dent in the headaches for us. We switched brands and now do it for one day every two weeks instead of 2 days in a row. While on loads, we did it for 4 days in a row, that was awful. Now the headache is for one day after infussions with the nausea, vommitting. Zofran is another drug that helps with the nausea if that is an issue for you.

The fanny pack for IVIG was a godsend for me. I hated having to lug the IV pole around, especially on my multiple trips to the bathroom as a result of my pre-infusion hydration. My infusion nurse spikes the IG bottles and transfers the IG into a plastic transfer bag. The transfer bag and my pump are then placed into the fanny pack, and I am totally mobile during my infusion. I have even gotten into my swimming pool during the summer. Lose the pole!

pattyo, one person on the site used to infuse at work. maybe you could hook up during lunch and go back to work with the fanny pack and meet back at your house to finish/disconnect. Then sleep off the headache when you get home, ready for the next day. Or, what about starting late afternoon on a Saturday still allowing you to get things done and then go to bed at night, sleep it off and wake up good sunday. Maybe even Friday after work? When do your headaches start? Usually we start about 1/2 hour after infussion or last 1/2 hour of infussion. We are 6 hours too. Usually go to bed, wake up around 11 am next day and can deal with pain by 2-3 in afternoon day following infusion. What brand do you use?