bny806
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So as I sit here getting my newly increased dose of IVG, i decided i’d consult Dr google once again, and I can’t believe what I found!!!!
So before my neuro symptoms started I had some pretty severe GI issues that lead me to an admit into the hospital for wt loss dehydration etc… At the end of my pregnancy with my son (now 11 months old) I had tested, as I always had, negative for CMV (virus), when I ended up hospitalized for my neuro stuff in december they checked a CMV titer/ab due to me telling them I had these GI issues.. well it came back positive.. I then today found online that CMV especially when infected not as an infant but as an adult under 35 years of age can cause GBS, and when it does it has a high likely hood of cranial nerve involvement, which I have… less overall paralysis like GBS from other causes.. it also seemed to have a longer recovery period.. It sounds like it described me to a T, I can’t believe that!
Has anyone ever heard of that relationship between CMV and GBS?? My GI issues have been fully resolved since the IVIG in the hospital!
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Dawn Kevies mom
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Hi bny806,
So, have you ever had another spinal or an initial ncv/emg? I only ask because I was wondering what made them decide that you had cidp and not gbs from the get go? Is the doc saying it is gbs? If it is then is he going to stop ivig? After you get the ivig do you feel stronger and less neuro symptoms? If so, then it probably is cidp, not gbs. IVIG would not help symptoms this far out if it is gbs.
Any virus could cause gbs/cidp, any bacterial infection. It is amatter of the immune system turning on to fight of the virus/bacteria and then getting confused and not shutting off. I don’t think there is any way to predict what virus in particular will cause gbs and what one will be cidp. I think it is just a matter of how each person reacts.
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bny806
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Thanks so much for your response!! They currently have the diagnosis of CIDP for me (atypical however). I have had two LP’s the first one normal (protein was 39 or 45 I think), the second one was 95, though that time I had meningitis it was found (the morning after my first day of IVIG loading dose- I was inpatient in the hospital). I have had THREE Emg/ncvs since this all started! The first one showed demylenation around my right knee (my first symptoms and most affected leg), but otherwise normal, the other two (though I don’t think anyone checked that knee again- they all only did more distal (but did go proximal and distal, and thoracic for the needle emg part) ) and the others were all normal!!
My reflexes have been atypical this entire time – “normal” or brisk, however they have been considered brisk my entire life… now my right and most effected knee is decreasing..
They have done autonomic nervous testing, which came back positive/abnormal (my heartrate has been out of control since this whole thing started), and nerve/skin punch biopsies which all came back abnormal, they say correlating with “inflammatory” neuropathy/cidp.. The GI symptoms that preceeded my neurologic symptoms have perplexed them since the beginning- my ANA went from mildly elevated to even more so (negative, to 1:80, to 1:640), and now have a positive CMV..
with not being the typical CIDPer.. i question the diagnosis at times.. well a lot! I still fear worse things – like ALS (my first doc was afraid that’s what it was until that first emg).. so anytime I find a possible other cause that explains my other symptoms I get excited!!
The loading dose of IVIG defintely helped.. the 1st maintence dose was A M A Z I N G!!! I felt like a new person on that 4th day.. i just hadn’t even realized how sick I was!!!! however, this last time (i got a virus/cold/fever etc), my IVIG didn’t seem to do anything : ( .. I’m now getting an infusion of an increased dose (now 48 instead of 30g).. I’m terrified that it was just a fluke that it helped so much last time, and it won’t help me this time.. and like I said I fear much worse diagnosis at times..
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Dawn Kevies mom
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I think I responded to some of a post you made on another thread. I mentioned that when we are sick with a cold, we do not get the full benefits of our treatment until the next one and the cold is gone. Also, what is your treatment schedule? 48g how often? How much time lapsed between your very first load (2g/kg) Do you know how to figure out the dosage amount for a load? If not, I can tell you how. The fact that you showed a marked improvement on your first load is good news. It confirms the cidp, as you responded immediately to it. Now it just might be a matter of figuring out how much and how often you need the ivig to maintain good results.
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bny806
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Thank you!!!! Gosh hearing, well reading, you say that just helps calm my nerves!!!  I REALLY appreciate you responding to the last post as well!! I work around sick people.. I usually don’t get sick from them, but from co workers occassinally, but mostly from my kids! I feel like a hermit right now, I don’t want to take my kids to birthday parties or big public events for fear of them getting sick and me getting sick (they are 2 years and 11 months).
I wondered if me getting further away from my loading dose would make the maintenance doses less effective if it wears off before I get the next dose.. I got my 3 day loading dose decemeber 17th.. then felt my symptoms return about 16 days after that.. had 30g (I weigh around 125lbs).. 4 weeks after that (due to confusion on the infusion center/university scheduling.. and then 30g 3 weeks after that..and now 48g 3 weeks after that.. Each time I notice an obvious decline at around the 16 day mark or so.. however, last time it was around then I got fever on that day and it was a much more rapid decline…
My dr is trying to keep me off immunosuppressants and steroids due to their bad side effects…. I’m hoping not only will I notice improvement with this dose, but that it will last longer, hopefully to the 3 week mark till my next round.. Do some people have to get another loading dose sometimes or is once enough? Thanks again so much for your help.. I REALLY appreciate it!
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Lori222
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I got the loading dose 2gm/kg for over 2 years—but 12 weeks apart. when i switched to dr dycks regiman i got a lot less 0 .04 gm/kg but more often (weekly). i am going back for a loading dose thurs& fri she wrote the rx for 6 months of 2gm/kg (loading dose) every 6 weeks for 6 months.
I wonder if the reason you noticed such a drastic improvement with your first dose is because you had a rapid deteriation with your symptoms when you got them?? They came on quickly, where as if they came on very slowly and progressively then they might heal that same way??? IDK–just thinking out loud here.
with me it’s the slow and progressive AND good days and bad days so it makes it very difficult to tell when im better or worse. Sometimes it’s hard to tell if i feel weaker because the disease is progressing or if it’s because i felt better the day before and over did it??
back to the loading dose question–i think my drs original plan was to do the loading dose until i reached the desire response then back off to maintainance dose, then see if i could go without it. of coarse this was 2 1/2 years ago—–dont know how much longer im suppose to wait for that “desired response” ???? lol
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Dawn Kevies mom
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We did loads for a year and then tapered off by 10 grams. The amount of time the ivig lasts is different for everyone. It has a 42 day cycle. That means 42 days is the most it works. Anything past that with no symptoms means your cidp relapse goes past the six weeks. Some people go 6 months, some relapse in a week. The best scenario is to stay a step ahead and never get to where your symptoms are apparent. Once you notice the signs, that means the demylienation has already started long before that. The healing process is a mm a day, but if you are noticing symptoms, you start from square one. Somewhere in the archives you can find out how many inches you heal in a year, I can’t remember how long ago I wrote that post but it is in there.
Regarding dose, if you weigh 125 divide that by 2.2, 125/2.2=56.8 So you weigh 57 kg to get a load you multiply by 2 so
57×2=114 A loading dose is 114 grams for you a maintenance dose is 57. So, if we were you, this is how we did it. 114grams over 4 days, so 28 grams a day for four days. We did that every six weeks for one year. The symptoms we had from a four day infussion were pretty bad, so then we did it every three weeks 28 grams two days in a row. As we started to taper down to a maint. dose we decreased by 10 grams each month and moved the treatment to every two weeks. So right now we are a little below a maint dose and it is given every two weeks over one day. I was just going by your weight and putting in our schedule. Frequency is sometimes more important in some patients than actual amount, to keep the titers more stable.
We have been on the maint dose (actually a little less than 1g/kg for more than a year now) Every so often we taper down again to nothing to see if we are in remission. Before we start the taper we always get a ncv/emg for a baseline so we have something to compare once the wean is complete. Thus far we have not been able to wean off, it has been 5 years. Hopefully puberty will be on our side and our immune system will rebalance.
Keep in mind everyone is different and the rate at which they use the ivig up is different for everyone. Not everyone responds to ivig, it is a process that takes a while to figure out. It also takes a while to figure out if you have the progressive form or the relapsing remitting form. Typically those with the progressive form do not see a marked improvement w/ivig, more of just a holding. Those groups of people usually find good results with the cytoxan protocol. It just takes patience to figure out a plan that works for you.
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bny806
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Thanks so much yall!!! I really really appreciate yalls help!!!
Dawn Kevies mom – that is interesting about the progressive or relapsing forms responding differnetly to the IVIG.. Mine had seemed to be progressive I though, however after this last “episode” it obviously felt like a relapse and made me look back and it did seem to hit then plataeu and hit again!
Thanks for the dosage info too! I appreciate it!
It’s also interesting that yall are on a six week loading dose, down here (in tx at my infusion center), I havne’t met anyone on that.. Is that something that MAYO does? It all makes sense.. and I could defintely see it being nice not having to get it so frequently! I met someone who gets A LOT once a week.. I would be recovering from it constantly I feel like!
Lori- I like your theory!! I think that makes a lot of sense, that it came on fairly quickly therefore less permanet damage is done and can be reversed quicker! I just am praying that this round works well.. I am still defintely better off in a lot of ways than i was in the beginning of december, and worse in some ways too- it’s all so strange! Overall I am defintely feeling better even at my “worst” .. but I have had more difficulty walking this past week it was pretty crazy! I guess I’ll just await that hopeful “desired response” for a few days!!! So nerve wracking!!!
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Dawn Kevies mom
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I think I might have confused you, in the begining we got it every 6 weeks for four days in a row. Each time we would be so sick with the aseptic meningitis reaction that it took a week to recover from that. In the end, currently, we get it every two weeks for one day. That is a maint.dose. If you were to get a loading dose, for a while, to stabilize, you get get it every two weeks over 2 days. So essentially that would be the four days spread out. Some people can make it 6 weeks, but it is better to stay on top of it, hence twice a month essentially making it a load every 4 weeks.
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bny806
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oh ok!! THank you for clarifying! I appreciate that! Gosh, even every two weeks seems like a lot (frequency wise), Working full time in a demanding job, plus taking care of two kiddos 2 years and 11 months I can barely get my schedule cleared for every 3 weeks.. including the day afterward to “recover” .. though if I felt better more often, then changing up my schedule to do it more frequently would of course make more sense!
Speaking of kids.. what do yall do about school/germs etc? With just getting a simple cold/cough (it did have fever with it the first two days) and having such a set back.. I’m pretty paranoid about getting sick again.. however, we are thinking about putting our kids into school three days a week to give me an opportunity to have a few days off to rest (most of those day’s I’ll be at work, but every once in a while it will result in a day of rest).. The only reason we havent’ enrolled them yet is that I know they will get sick, which of course I don’t want, but then that will also get me sick sometimes too! Any advice on that? Thanks again yall!
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Emilys_mom
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My step-grandma has CMV which caused her to get fibromyalgia & chronic fatigue syndrome.
She has to take meds to control her CMV…her dr does regular titers.
Kelly
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Dawn Kevies mom
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bny806,
If you were to do the treatments at home, you could get a fanny pac and be mobile around the house. We use a pole at home because the nurse and my son spend most of their time on their buts playing xbox or playing cards or movies. Being a busy mom it would free you up to move around, make dinner laundry etc. You might feel better with a closer frequency and you might have less reaction because you would be splitting the amount over more days. That was our primary reason. We would get so sick with the 4 days in a row once a month. We still get sick, but not as bad. Now it is one day to recover compared to 4-5 days.
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Lori222
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bny–i mentioned every 6 weeks, that may be where you saw that. Mayo did have me doing a less amount weekly–which, yes, with a full time job, kids etc it was a pain!!! I am now going to try a higher dose every 6 weeks–which is going by the 42 day average Dawn mentioned above. I started the 6 week intervals last spring –but only got a chance to do it once before my mayo trip and then started the weekly, so i didnt really get a chance to see if the 6 week intervals would work.
Dawn that makes sense what you posted about waiting too long and everything thats healed is lost. I feel like that is what was happening to me on the 12 week intervals. I improved after having it weekly for 16 weeks—-but then my dr appt wasn’t until a month after my last infusion—so i wnet a month with nothing before the emg/ncv. it seems to me that it should have been done right after the 16 weeks ended. I hate always feeling like Im having to tell the drs what to do—but it seems we learn way more on this site then most of them will ever know about this disease.
i dont mean to intrude on your post bny—but Dawn, where did you learn of the cytoxin for the progressive cidp–which is what i have? I was happy to see that comment because i am ready to research something new to try–i will start there–thanks
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bny806
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Lori- no intrusion here!!! I Like to learn about any and everything on here.. Its more informative than my dr’s appointments to have yall to learn from!
With me going every 3 weeks now and it starting to wear down right after the 2 week mark, we’ll have to change something up! Hopefully the increased dose I did yesterday will last longer.. I know after my first loading dose.. the improvement was ever so slight… I thought surely it must have just been a placebo effect, since I so badly wanted it to work .. until it started wearing off.. then I realized it was obvious it had in fact worked.. the 2nd time.. I started getting really upset around day 3 that i hadn’t had any improvement.. then that 4th day it was just like a miracle!!! I held out that hope for last time and felt like all i did was get worse fast.. ugh.. this things is just crazy!!! I’m also curious to hear of any other alternative treatments in case IVIG doesnt work
Kelly – that is interesting! I didn’t realize it was something you could have chronically.. I might need to talk to my dr about all of that!!!
Thanks so much yall!
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exosurf
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Lori 222-How does one know if they have the progressive or relapsing form of CIDP? What are the differences?
Dawn Kevies Mom–I thought the maintenance dose of IVIG was 0.4 gm/kg? I get 25 gms every 10 days. I am about 120 lbs. But you mentioned “a little less then 1 gm/kg.” I did get the 2gm/kg over 5 days as my loading dose at the very beginning. But now I get 0.4gm/kg. Could I get more than the 0.4 gm/kg? Does anyone know–does IVIG ever lose it’s effectiveness ever? I feel that I am getting more paresthesia now, more aches, electric shocks. Do I need more IVIG? I think my doctor is more interested in how the IVIG is maintaining my strength; although my weakness of my legs come and goes. Does this intermittent weakness mean I need more IVIG? Sorry to ask so many questions, my doctor does not offer a lot of information about CIDP.
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Expert diagnosis & management of inflammatory neuropathies is critical to our patients. This is what our medical advisory board members had in mind when setting up the new Centers of Excellence program. A year later, we continue to add healthcare facilities providing exactly that.
