IVIG/treatment and symptoms

    • February 27, 2012 at 3:14 am

      I just had my 3rd IVIG maintence dose (4th if you include my loading dose).. The 2nd one was AMAZIIIIIINNGG!! the 3rd/relapse no improvement.. I could literally barely walk before this past infusion due to hip weaknes.. I”m now day 5 after the infusion and I am better.. it’s easier to walk.. but not a lot better.. I just don’t understand! We increased my dosage from 30g (which as I said was MIRACULOUS that 2nd time)!!! to 48g this past time.. I don’t understand why i’m not feeling/noticing more improvement?? Should I be hoping fo not improvement, but simply halt/slowing of progression? After that 2nd one I thought I could hope for improvement, but now I just am so confused! Do I need to do another loading dose at this point.. or wait my 3 weeks and try again with the 48grams .. maybe I am having the expected response? I’m just frustrated.. after feeling so amazing after that second time.. I just want to feel that again!..
      Also on a wierd note.. the first 2 infusions I broke out in a wierd rash on my palms and feet. had chest pain from the infusion.. and the last two (not really effective ones), no rash?? Did I already build a tolerance to IVIG.. if thats even possible? I kind of like the rash, so that I know I did in fact get IVIG not saline ๐Ÿ™‚

    • Anonymous
      February 27, 2012 at 12:15 pm
    • February 27, 2012 at 4:24 pm

      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.

    • February 27, 2012 at 4:24 pm
    • February 27, 2012 at 8:59 pm

      Thanks for your response!! I actually am not sure how many grams I got for my load dose.. at the time I didn’t know enough about it all to ask, or retain it if they did tell me! It was all a new and foreign concept. . I weigh 125lbs. and my first maintence dose was almost 5 weeks after my loading dose (it was supposed to be 3 weeks, but there was a mix up, so it was 4+ weeks).. then it’s been every three weeks since then.. I got 30G the first two maintence doses (that first one felt AMAZING), 2nd one nothing, then we bumped it up to 48G this last time (again three weeks increment) my neuro said I could go in early for this last one, but the way my work and family schedule was I had taken off the time already for the 3 week schedule and just couldn’t change it.. I’m the breadwinner in my family.. no stress ๐Ÿ™‚ Have you ever heard of it working SOOOOO well at first and then this quickly not being as effective?

    • February 28, 2012 at 3:48 pm

      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.

    • February 28, 2012 at 8:49 pm

      Thanks so much Dawn Kevies Mom!!! I REALLY appreciate you taking the time to respond, and do the math too! ๐Ÿ™‚ You sure are knowledgeable about all of this! I am going to talk to my dr about doing a schedule like you mentioned.. I just feel it worked SOOOO well that 2nd time that it has the ability to work well again! I do feel like I noticed more of an improvement starting yestserday evening.. (I wanted to crawl out of my skin and couldn’t hold my arms up or hardly walk a few days ago).. and that thankfully all went away!! Pheww! Hopefully my dr will be ok with me suggesting a different plan!
      It is defintely overwhelming.. I try not to ever complain or have never said it’s not fair etc.. since I thought it was ALS from the get go.. I know it could all be WAY worse! Whats important to me is that I am around for hopefully at least ten years but hopefully many more to watch and teach my kids as they grow. I have always been super busy and go go go.. so no doubt this is hard, forcing me to slow down, and without family around, there is A LOT of responsibility on my shoulders, especially with being the breadwinner. I know I have to put this and my health first, but I don’t know what we would do if I loose or can’t work my job.
      I am appologize for my posts/questions being all over the place, I type like I talk- in one run on sentence:) I think the hardest part of this all is that I still fear the whole ALS thing.. though I can see how that could be an irrational fear at this point, In the back of my mind I can’t shake it.. maybe its PTSD from the first dr who told me that’s what he was concerned about!
      I am also going to talk to my dr about doing the home health thing.. that sounds WAY better than what I have been doing.. HOpefully the home health nurses can get hard IV’s!!! thanks again, I appreciate it!

    • February 29, 2012 at 12:35 am

      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.

    • February 29, 2012 at 2:31 am

      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 ๐Ÿ™‚
      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.

    • February 29, 2012 at 2:35 am

      Thank you so very much! I don’t even know how you do this with it being your child that has this.. I think that would be so much harder than myself being affected.. My heart goes out to you!…. I feel like I have so much more anxiety/worry since I have had kids.. I just have this overwhelming need/desire to be here for them, to teach them, and for my own satisfaction watch them grow up etc.. when my IUD perforated and I was really sick (I knew something was wrong, but kept on about my life for a week while I bled internally- ugh I feel like an idiot now looking back).. All I could think about was being here for my kids.. Even though I have had THREE emg’s- none which showed any signs of ALS.. I just know my symptoms are so atypical for everything else (tongue twitching, muscle wasting etc etc etc), I just fear that something has been missed.. though after almost 12 neurologists and 3 emgs I shouldn’tn feel that way.. like I said I think it’s PTSD!
      My heart also goes out to you having to see an oncologist.. I don’t want to pry, but I hope everything is ok.. and that you won’t need to be seeing an oncologist at all EVER again!!!
      I have PHCS/group resources insurance.. not impressed with it.. my insurance isn’t very good thus has resulted in us paying A LOT of medical bills, hence more need for me to be the bread winner! But I am defintely going to check with them about the home health.. and about your company yall use too! Ugh to win the lotto and find a cure for all neurologic and other diseases!!! Thank you again so much for your time!

    • February 29, 2012 at 3:16 am

      Lori- I know exactly what you mean!!! After the initial loading dose in the hospital, I wasn’t sure if it worked.. I knew I felt better, but chalked it up to placebo effect and the “rest” in the hospital.. it wasn’t until about 16 days or so afterwards that it started wearing off that I realized it must have in fact been working! Then of course there was no question with the 2nd infusion.. it was SOOOOOOO amazing!!! I just can’t get over how quickly I declined with the “relapse” after the cold/virus I had.. I was barely able to walk due to my hip weakness… couldn’t hold my 11 month old but for a few seconds.. it’s just crazy! So I can function a lot better, hold him, work, have better dexterity etc.. but it’s just not like it was after that 2nd one.. So i’ll take not getting worse (I was so scared I’d be in a wheelchair at that rate in a week), as opposed to getting better, though of course i’d prefer to have improvement! I had never heard of IVIG.. much less knew that it was something you had to customize so much! Thank God for modern medicine!!!!
      Lori- how did this IVIG go?? Do you feel it might have worked better than in the past (I wasn’t sure if the combination of PE plus IVIG made it work any better?? ) Are you going to do PE again at all, or just try to stick with the IVIG?

    • March 1, 2012 at 3:59 am

      Yes it is working ๐Ÿ™‚ 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 ๐Ÿ™
      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.

    • March 1, 2012 at 8:53 pm

      Thanks so much Lori!!! I couldn’t agree with you more, I just can’t even imagine how hard it would be to watch my children go through this.. That would take some serious strength!!!!! My heart goes out to any kiddo and parent that has to go through ANY illness other than the usual childhood colds etc!

      I do think I should go to mayo, but in all honestly I’m just sooo sick of seeing dr’s and being poked and prooded! I feel like that was all we did for months and months.. so even though I wouldn’t say that our life is normal at this time, our new normal I guess, I just am enjoying only the occasional follow up and that’s it right now.. I know that’s not the smart choice.. I’m hoping that we can continue to tweak the IVIG and at least halt the progression of this mess… but defintely if things worsen, then I know that’s what we will need to do – go to Mayo, or somewhere similar. Ugh.. I just want to forget about it as much as I can.. hahha but that’s impossible!!! I heard yesterday a girl I went to high school with passed away after battling with a chronic illness for a few years, she had two small kids… It’s just so scarey the way things happen, and so heartbreaking.. Even if I do end up in a wheelchair, i’m ok with that as long as I can be here to watch and help my kids grow up.. hearing that news just really made it hit home how tomorrow is not guaranteed by any means..
      I”m SOOOO glad to hear that the IVIG worked this time!!!! That is GREAT news!!!! My numbness always preceeds worsening as well! So does hot water/heat.. When I wash my hands under hot water, it’s just the strangest feeling ever and super tingly for a while afterwards.. Kind of worried what summer will bring here, after like 40 days over 100 last year!!! Ahh! I hear ya on the balance.. when I close my eyes right now I fall right over, that’s a new occurance since that last “relapse” .. The vision thing is just wierd! I don’t know to explain it, but when it first happened i couldnt’n drive, since I didn’t feel comfortable with the visual change- I almost hit our wall in the garage at first! yikes! I’ve adapted, but it has worsened this last few weeks, so it’s taken more adjustment.. I might try to find a neuroopthamologist?!?
      Thanks again so much, and i’m so glad to hear that the IVIG is working better this time!

    • March 1, 2012 at 11:24 pm

      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.

    • March 1, 2012 at 11:29 pm

      i really hate that we have no private messaging anymore ๐Ÿ™ 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

    • Anonymous
      March 2, 2012 at 6:29 am

      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!

    • March 4, 2012 at 9:40 pm

      Thank you so much Lori!!! I know.. you are sooo right, I don’t want to settle for that, that much is for sure!!! It is hard going to neurologists of all specialities I think since so many of their exams and tests are so subjective! One Dr will tell me they can’t elecit my reflexes, while the next says they are brisk, and the next says they are normal ahh!! haha.. I tell my husband a lot.. why can’t it be like a pregnancy test- you just pee on the stick and walaa! there is your answer! :)… and treatment plan… and dose etc haha..
      As far as diagnosis, my dr is confident in their diagnosis it seems.. after the autonomic nervous testing, plus ANA, plus nerve/skin punch biopsies all coming back abnormal (pointing towards CIDP), they tell me I have “inflammatory polyneuropathy” and write down CIDP, they say some sort of atypical CIDP.. After my exacerbation/relapse my most symptomatic leg did have decreased reflex (from normal for me) on that side..
      Since this last IVIG.. my symptoms defintely improved, though not as much as that 2nd infusion did.. but I can walk without thinking twice (a few weeks ago I was a mess, barely able to walk due to bilateral hip weakness).. My speech was bad and everything, now it is all WAAY better.. SOO thankful for that! I plan on calling my dr when I feel it wearing off (I think I might a little today, but we celebrated my son’s 1st birthday this weekend with house guests all weekend and not enough sleep).. So, i’m goign to get good rest tonight and if it’s still feeling like it’s creeping back, I’ll call and request a more aggressive plan. It’s hard to think with my son’s birthday being 1 year, that I have been sick most of his life (it all started at about 7 weeks post partum with the IUD). .. I just hope we are on the right track!

      Lori- did you have muscle wasting? I do in my hands.. both symmetrically.. Since that 2nd IVIG it has improved in the palm/meaty part of the hand, but on the top/backside it looks like it might have worsened a little, though my hands are no longer weak! I also miss the private messaging.. how could they forget such an important feature??

    • March 4, 2012 at 11:20 pm

      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 ๐Ÿ™‚

    • March 5, 2012 at 1:33 am

      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.

    • March 5, 2012 at 2:04 am

      Dawn—so sorry to hear of all you are going through ๐Ÿ™ 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 ๐Ÿ™‚

    • March 5, 2012 at 3:33 am

      oh Dawn, I’m soo sorry!! I can’t even imagine the stress you are going through!! Nickel size is pretty big- ouch!!! You will be in my prayers that it will all be just fine! Keep us updated if that’s ok with you, wish we could do more to help!
      Thanks for that description of the repair too.. that helps! ๐Ÿ™‚ I have to have really good dexterty for my job, and I had lost it- I couldn’t even color with my 2 year old – holding a fork, crayon etc was almost impossible. After that 2nd IVIG i picked up a crayon and just cried with joy that I could color!!! I went back to work and had my “Groove” back with my legs, speech, engergy and hands.. thankfully they weren’t “hit” with the relapse like my hips were. Its strange my palm side has gotten thicker- like my hands used to look, but the top side thinner?

      I had a strange thing happen today.. I started getting my shocks back (it took about 2 days after this last IVIG to resolve the shocks.. I had gotten them since that relapse.. They have been gone until today and now having them every once in a while).. I went to the store and was walking and both my feet felt REALLY warm and burning up to my ankles, then the further I walked I went more and more numb- from the mid trunk down.. COMPLETELY numb.. I wasn’t even sure how I was walking.. it was the strangest thing!!! I have been more numb since, but not like I was when I was walking- anyone had this before?? is that a bad sign? I’m trying to think of a nice way to “suggest” a more aggressive IVIG plan with my dr.

    • March 6, 2012 at 3:38 am

      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

    • March 8, 2012 at 2:36 am

      THanks Lori!!! Good to know that other people have the same type of symptoms!! The paresthesias/sensations are just so strange!! I am feeling great since my last IVIG, with the exception of itching (I had a rash after the 2nd ivig that worked great, and nothing after that 3rd one, and this last one I broke out in a rash a bit later, but it’s working great- so I can deal with itching if it means I can walk)!!! I didn’t take my lyrica last night, I had just forgotten, and My paresthesias were sooo much more intense! It felt like my feet were on fire- I kept having to look down to make sure they weren’t!!! That and the water dripping sensation- I had to make sure I didn’t have water dripping on me, even though I knew better, the sensation was just so intense!!! So wierd!!! I am 15 days out from my last IVIG, and so far it doesn’t feel like it’s wearing off like the last several doses have around 14 days or so… keeping my fingers crossed!!!!! thanks so much for your help! hope your doing well!

    • March 9, 2012 at 12:42 am

      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- ๐Ÿ™‚ 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???

    • March 9, 2012 at 2:15 am

      Glad to hear your doing well!! Ahhh the gym sounds soooo nice!!! I need to cancel my membership! I don’t foresee being able to do anything like that for a while – since basically every single muscle in my body is affected.. If I overdue it, which sadly now can be something simple, but im wiped out for a while afterwards! Though not nearly as bad as I was before that 2nd IVIG! I was SOOO excited about getting my body back after having my son (who turns one tomorrow!!!) I had been pregnant back to back to back gosh, 7 times, so it was finally time for me to “take control” of my body haha.. I’m thin, but not firm! ๐Ÿ™‚

      I agree – I think live chat would be great!!!! I still can’t believe we can’t private message!! It’s crazy how IVIG can just abolish the fatique! After that 2nd dose kicked in, it really made me realize just how sick I had been for how long, I dont’ know how I functioned!! SOO thankful IVIG is working, though I am 16 days out and think it’s starting to wear off a bit.. I think I need to change up the frequency or something! I’ll talk to my dr and see waht we can do! Do you take lyrica or any other meds for the paresthesais?? I’m not big on medications, but after almost 3 months of not sleeping- due to the paresthesias waking me up CONSTANTLY.. and wanting to crawl out of my skin, It helps me SOOOOOOO Much, I just can’t be sane without it now! ๐Ÿ™‚

    • March 10, 2012 at 12:30 am

      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.

    • March 10, 2012 at 3:52 am

      Yup, I was pregnant 7 times in a row– 7 times in about two years or so!! I had 5 miscarriages, so I have two kiddos, that we are VERY thankful to have (it took fertility treatments to get most of those pregnancies!)… Then high risk pregnancies/complications with my two kiddos, then the IUD perforation/debacle.. so no wonder my body is tuckered out!!!
      I use the lyrica for the creepy crawly tingling sensations.. I don’t describe it as pain, but it is enough creepy crawly to make me want to crawl out of my skin and go crazy – especially when it wakes me from sleep ALL NIGHT! So, it really saves me.. I don’t take any during the morning/daytime, so by the time it wears off I want to crawl out of my skin!!!
      It’s funny.. well not really ๐Ÿ™‚ but my IVIG is starting to wear off, so i’m starting to stumble again like I was a few weeks ago.. and just feel WIPED OUT.. I cant wait until tuesday when I get another infusion.. I think I need to change it up a bit, but things have just been so crazy.. I’m hoping since I made it longer with this round, hopefully the next infusion will have a cummulative effect, fingers crossed!

    • March 10, 2012 at 8:42 pm

      fingers crossed for you ๐Ÿ™‚ 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

    • March 11, 2012 at 3:57 am

      Thanks!!! Haha, funny you say that- I told my husband I felt like I must have just gotten saline the time before last – no ill/side effects and no good effects either!!! I told him maybe someone was selling it on the black market getting rich! haha.. this time I got my usual rash and my weakness fixed! It’s so crazy how it can vary from one treatment to the next!!! I wish that I could just have the same donors as the 2nd batch every time!!! Though this time it is working pretty great! Just now feeling it wear off.. I haven’t made it this long yet.. so I guess the increased dose is working! ๐Ÿ™‚ when is your next round?

    • March 11, 2012 at 4:05 am

      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

    • Anonymous
      March 13, 2012 at 1:37 am

      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.).

    • Anonymous
      March 13, 2012 at 1:40 am

      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?

    • March 13, 2012 at 2:39 am

      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 ๐Ÿ™‚ 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.

    • March 13, 2012 at 1:31 pm

      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.

    • Anonymous
      March 13, 2012 at 1:42 pm

      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!

    • March 13, 2012 at 2:43 pm

      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?