3rd IVIG not as effective?/relapse?
February 10, 2012 at 3:46 am
Hello everyone!! Hope everyone is well! I missed having the forum around!!! I had my 1st maintence dose of IVIG about a month ago now, and it was A M A Z I N G!!!!! I didnt’ feel well, and I was starting to get upset that I didn’t think it was going to work (i am atypical CIDP, so still fear really bad things every once in a while)… well on the 4th or 5th day I woke up and grabbed my phone (alarm) and couldn’t believe it!!! For the first time in MONTHS i didn’t feel jelly fingers!!!Every single thing I did felt different, natural and easy!! I coudln’t stop smiling for days and days and days!!
It working like that made me realize just how horrible I have felt for 9 months!! I just kept realizing I was doing things that I hadn’t been able to do- simple things like scoop formula into a bottle, hold my arms up to a clothing rack (my shoulders had been too weak for months).. I even RAN after my kids! My hips just suddenly worked!! My slurred speech TOTALLY gone, i didn’t even think about speech/swallowing issues for about 10 days!!It was truely a miracle!!!
Then about 15 days after the infusion the old symptoms started creeping back in.. turns out I got a virus from my kids (fever, cough etc).. then I had my 3rd IVIG a week ago now.. and have been waiting for that AMAZING feeling again.. but though I am slightly better I think, and defintely still better than I was 2 months ago.. it didn’t seem to work nearly as well as last time.. is this normal? Has this happened to any of yall? Is it due to the virus I had making my immune system angry again?
The night before my IVIG I had an intestinal flare up , heart rate up , swallowing issues, and shocks goign down my back (exactly how it happened initially months ago.. i’ll never forget that shocking sensation).. how I”m having crazy tingling/numbness in all effected limbs and face.. speech is slurred again… SHould I go onto steroids or immunosuppresants in addtion to the IVIG (i’m on a lower dose -30g- every 3 weeks)..
Thank yall and I’m sorry I blabbed for so long!
February 10, 2012 at 1:13 pm
Hi there! I have been thinking about you often during the forum blackout period! I had such a similar experience- The challenge with cidp is it is literally like trying to shoot a moving target- only when the inflammation/ demylenation is blocked can your nerves start to heal and many things affect the balance of healing/ damage. I myself am recovering from a cold and my usual 10 day interval of ivig does not seem to be relieving my symptoms as much as usual. I was told by Dr Dyck at the Mayo that getting things under control and relapse free is essential before backing off of dose of ivig- I was on weekly ivig for about one year and then added an immunosupressant ( Azothioprene or Imuran in my case) to try to allow for extending interval between IVIG. So far it has worked but I definitely have times when I am stronger and less paresthesias/ fasciculations. I would advise you see if you can get a more frequent IVIG if you can swing it as you are still not stabilized. My neurologist has always taken the approach of getting me to normal or as near normal function as possible – your current symptom burden is really not an acceptable outcome esp when you are not on optimal treatment yet. Good luck and hope you are feeling better soon!!
February 11, 2012 at 12:31 am
hi—good to hear from you–I was wondering how you were doing. The good thing is you now know the ivig will work for you.
You had such a good and quick response to it. Now you just need to work on the frequency–see if you can get it BEFORE any relapse occurs. That’s great news that it worked that well for you 🙂 The PE procedure went fine, it’s a little more of a nuisance than ivig but not a huge deal. I have not noticed any significant improvement from it. I’m not really sure of this new forum, i dont think we can even send private messages–unless i just havent figured it out. I really miss the ability so search a certain topic and those posts would come up—I used that feature a lot. We should get each others e-mail in the event it goes down again. I had some peoples e-mails and numbers–but unfortunately the only place i had them stored was in my saved messages on the old forum, so lost them. glad your back on here–hope things continue to improve for you:)
February 11, 2012 at 3:22 am
Thank yall both so much!! I know, it was hard not having this forum! I can’t figure out how to message individuals either… How do I even send you my email address without posting it on here for everyone to see???
I know with the first round of IVIG, i thought It might be working, but then I thought it might just be placebo effect , since i soo badly wanted it to work (without a firm diagnosis in place I still feared and honestly still do fear some bad case scenerios)..but then I felt it start to wear off (around day 14 or so) and realized IT DID work…. phew! I still can’t get over the 2nd round – AMAZING! But, it defintely started wearing off at day 15 post infusion
I’m glad to hear that others seem to think it wears off quicker or isn’t as effective when sick.. Have yall gotten sick more frequently being on immunosuppresants? I am only on 30grams, I wonder if going up on the dose would help any as well as increasing frequency? Did yall try steroids? I just hate the thought of steriods…ugh so many bad side effects, but if it can help I’m all about it!
Shellbones- you mention less fasiculations…it was the strangest thing, about 10 days after my last IVIG infusion, I was sitting down one evening and thought something seemed odd (besides the HUGE smile on my face that i felt so good).. I realized that I wasn’t twitching!!! For the first time in TEN months – NO twitching!!! for about 10 days I didn’t feel a twitch, and it was just odd – in a GREAT way!
The worst part for me is my speech, no one can hear my slur … but it’s defintely there along with difficulty swallowing/odd sensation swallowing.. i had NO speech issues for three weeks after my last IVIG… It makes my mind go back to the motor neuron fear (despite THREE clean Emg’s.. I still can’t shake the fear). my face has been completely numb for the past week since I feel like this “relapse” started.. it’s all so strange!
I have my follow up appointment tuesday, so i’m curious what they will say! Thank yall!
February 12, 2012 at 3:25 am
I did try the prednisone, but it was not successful for me. It seemed it had the opposite effect for me that most have. Instead of gaining strength, i got weaker. I lost weight, where most gain on it.
A lot of people have had success with it, so it’s definitely worth discussing with your Dr. It does come with a lot of undesireable side effects, but i believe most of them are for people on high doses for long periods of time.
sometimes I would get what felt like a cold starting right after getting my ivig–but it usually never turned into a cold, and only lasted a few hours after the infusion. Actually i have never been sick (other than headache induced from lumbar puncture) since I have been diagnosed with cidp in june of 2009, and very rarely in my entire life. Really puts the whole overactive immune system in perspective—I think i would have much rather had a few colds and viruses in my lifetime than this!!
February 12, 2012 at 3:33 am
Thanks Lori! interesting about the prednisone! I’m not sure if they would do that or a different immunosupressant first?? I’ll defintely be asking! I feel like the IVIG is working better today (10 days after)… Do hormones have any effect on CIDP that you have heard?? I have noticed there are certain times where my symptoms flare a bit (the overall weakness and the speech/swallowing esp)..
Also, interesting you mention weight loss! Have you had weight loss issues with all of this?? I lost 16lbs initially, in only a matter of weeks… i was STARVING all the time.. I told my husband I literally thought I was going to starve to death…. all I did was eat SOO many meals a day, in th middle of the night, protein drinks you name it and continued to loose! I also had hyperactive intestines during that time.. i guess malabsorption of some sort… Anyhow, with this last flare- the first symptom was a 2 lb weight loss and intestinal flare.. followed by exacerbation of neuro symptoms.. I have been gluten free ever since the onset of this whole thing just in case..
I also rarely have gotten sick, same thing my entire life I always seemed to be the one that never got the illnesses other people had.. but that has changed the past two years, with pregnancies etc..
February 12, 2012 at 3:30 pm
no, i havent had weight loss since the cidp,with the exception of the few months i was on the trial of prednisone. In fact, Im kind of worried about gaining, without the ability to run or go on long walks anymore—so now i have to watch what i eat instead, uggg –have never really had to do that before:(
I do think that my fatigue and numbness feel worse right before my periods . Im not sure if its due to the hormone changes or that there might be a little more inflammation/water retention at that time of the month?
Do you think going gluten free has contributed to your weight loss? That’s a lot of weight to lose unintentionally. I have never looked into malabsorbtion and how it might effect cidp….but i do know that when Im naughty and eat something real fatty like a mcDonalds cheeseburger that it seems i get an energy burst from it–Im thinking it’s the fat?? but not sure.
I do take fish oil daily because i have read that the good fat in it helps the nerves heal, and it supposedly helps with inflammation—-still it doesnt seem to have the same effect, energy wise as that fatty cheeseburger.
February 13, 2012 at 12:58 pm
Hello there- hope you are doing well today! In terms of prednisone I have taken only a few times for relapse until I could get loading doses of ivig but I tolerate it very poorly- very jittery , can’t sleep, stomach pain. Before considering adding another drug to your regimen , you might want to ask for more frequent ivig as it is safer and will not suppress your immune system and put you at risk of colds/ infections. I myself have not noted a large increase in colds/ infections on imuran but when I do get sick it is def worse and usually end up on antibiotic for sinus infection. Prior to immuran , I never required antibiotics. I also lost weight with my initial dx of cidp largely due to a huge loss of muscle mass- when your nerves are not serving your muscles properly you will get atrophy of muscles- as I have stabilized this has improved and my weight is about what it was before I got sick. In terms of hormones, I do notice a change of my symptoms for the worse when I am cycling. I also take fish oil and started turmeric as was recommended by a rheumatologist- it has a known anti inflammatory effect. Gluten free did not help me and I actually had the biopsy of small bowel which was negative for celiac- you have to be careful with gluten free to get nutritions grains – a gluten free diet can run the risk of low fiber and lack of nutrients like b vitamins found in whole grains. Hope this helps!
February 13, 2012 at 9:10 pm
Thanks yall!!! As far as the gluten free thing.. I had about 2-3 months before my neuro symptoms started of GI symptoms and weight loss (it all started immediately after the IUD perforation/blood transfusion hospitalization).. I realized I looked awful- my face was sooo thin (and I have always been thin, but had a chunky face).. all my clothes were huge (and I was only 7 weeks post partum or so)… i think I made a mistake by continuing breastfeeding throughout the blood transfusion/iud trauma.. I regret it.. It wasnt’ until months and months later where I literally thought I was going to drop dead- heart racing and SOOO weak that I was pumping and pumped out clear/blue water.. It really hit me right then, that i was really sick.. and my son wasn’t benifitting from breastmilk that had no nutrients, and either was I !! so i stopped right then and there
My dr hospitalized me due to my heart rate/dehydration/malnutrition from the GI symptoms.. and it was that same week before the hospitalization that my neuro symptoms really started (My knee was “floppy” and then a few days later my hands went wierd, with the numnbess etc moving up).. I went gluten free the week I got hospitalized (after the weight loss), my bowel symptoms seemed to improve a bit.. but they didn’t fully resolve until the first IVIG dose (about 8 months or more after they started!))!!! Now i’ve gained 10 lbs since the IVIG, and eat much less! I had felt STARVING every single second of every single day until then.. finally I feel better! I cut out all processed foods for a while, but am back to eating some gluten free processed foods.. My celiac tests have been negative (but I was already gluten free then) I have two family members with celiac.. so until I get my life back or at least stabilized I think i’ll continue on .. as much as I CRAVE a REAL cookie!!!
That is interesting about the hormones thing!
My follow up is tomorrow, so I’ll defintely be talking about either increasing the IVIG dose or frequency.. I really don’t think the steroid side effects sound very good!!! Thank yall so very much!
February 15, 2012 at 4:52 am
Here’s what I’m thinking…
I noticed a HUGE improvement with Emily right away. She went from barely being able to walk to running & jumping…in less than 24 hours after her 1st IVIG. I think you notice the first improvements more because you’ve been so weak for so long.
If you are noticing you are feeling weaker 15 days after your infusion then I would suggest trying to get the 30 grams but every 10 days. The trick is to get more IVIG before you start to notice any symptoms. The attack is already happening on your nerves when you notice the symptoms. If you can stop the attacks all together then your body can start to repair itself.
Honestly, I would tweak the dose & schedule before trying steroids.
February 15, 2012 at 10:08 am
THank you so much Kelly!! I think you must be right about that as far as the first IVIG having the most improvement to be made- my hubby says the same thing! 🙂 My dr today at my follow up also said that when I get a virus it can really set me back too, or make that round of IVIG less effective… I still notice improvement from the last IVIG (not much from the most recent)…. but things like holding my kids for any amount of time, which i could do SOOO easily after that last IVIG, I just can’t do right now (and i’m 14 days s/p this last IVIG) 🙁 hips and shoulders are pretty weak again too. Other things like my overall energy and especially my dexterity are amazingly better, if not completely back to my old hands! 🙂
I had my follow up appointment today, and my dr wants to increase my dosage from 30g to 48g (i weigh 130).. We talked about repeating the dose more frequently if needed after this next dose (i have cleared my schedule for my next dose to be next tuesday and unfortunately can’t budge that any sooner).. My dr agreed no immunosuppresants/steroids at this time… phew! Now I just pray this next round I’ll notice some decent improvement!!!
February 15, 2012 at 12:42 pm
Hello there- I am glad to hear you are having your ivig adjusted – hope that helps! Keep in mind that the dosing and schedule of IVIG is more an art form than a science and that every person responds differently and treatments need to be individualized. I myself am getting an extra treatment this week despite my normal 10 day schedule due to multiple colds/ viruses setting me back so even when you are in more of a steady state , sometimes changes need to be made. The most important thing I think is that your treating neurologist listens to you , and is willing to work with you. Only you know how your body feels. You will be in a partnership for the foreseeable future with this doctor and having 2 way communication is so important. Hang in there and keep asking questions!
February 16, 2012 at 3:27 am
THanks so much Shellbones! That’s interesting that illnesses can cause SUCH set backs!!! I also wonder if the fact that i’m getting further out from my loading dose is affecting my sytmpoms? My dr seems to listen now, and mentioned adjusting the dose or doing another treatment earlier very easily.. though at first I think they thought I was just a stressed out woroking mom, until tests started coming back abnormal.. It’s so strange.. my symptoms are bodywide.. with distal (hand) involvement and pretty bad shoulder and hip involvement.. all my muscles are so weak and shakey today My buttock muscles just flat out get so fatigued I can barely put one leg in front of the other.. it’s so odd!! Is that “normal” in this whole CIDP thing?
AnonymousFebruary 18, 2012 at 5:59 pm
This is so similar to what many of us experience – the further away from from our infusion (especially after being sick), the more those nasty CIDP symptoms start creeping in. My foot drops, the nerve pain hits the roof, I start dropping things, tripping, bladder loss at night … and then (just like jaws!) I start drooling, slurring my words,dropping things, bladder problems during the day (so embarrasing – time to wear dark bottoms), falling….. but the gift is that my burning stops and I can hardly feel a thing. Last week when I put on my sneakers I must have bent my toe all the way back; I discovered that night it when I began to feel some throbbing — when I went to bed and took off my shoes – wooo no! a big oops. I guess that’s why diabetics lose their toes.
The message to you and your doctor – think about moving up your iv treatment schedule to catch you before you relapse. ( I have had to stop the ivig due to complications, hence this crazy relapse.) As long as you tolerate the meds, try to get your doctor to work with you and your body. You will have to readjust as you go along – don’t be surprised if every 6 months you need to readjust.
If you need a little boost, grab one of your kids, smell their hair and rub their little cheeks; they will give you all the strength and motivation you need.
February 18, 2012 at 7:56 pm
pattyo do you mind sharing what your complications from the ivig were? that is one of my concerns–developing complications.
I was recently diagnosed with anemia. I have read on some sites that the ivig can cause seperation of red blood cells leading to some forms of anemia, then there’s the kidney damage that may occur–which would all be worth it IF i was positive the ivig was helping me witht ht cidp.
what do you use to manage your cidp now that you are off ivig?
February 19, 2012 at 2:44 am
Thank you so much Patty!!! Its soooo nice to hear you say that your symptoms are similar to mine!!! I still have fears with my CIDP being atypical that it could be something worse.. especially with the minimal effect of this last IVIG… though that 2nd one was the most dramatic amazing effect I could have imagined… The drooling and slurred speech reallly worries me!
haha, funny you say that about your toe! I run into so many walls, doors, etc just loss of proprioception of my limbs, and I broke my toe.. since this last relapse/virus I can’t feel it haha.. so that’s good I guess!? It’s amazing how fast my body feels like it declines once the IVIG wears off!
I have good spirits most of the time.. pretty much if I can believe my Dr’s and that the IVIG worked.. and believe my diagnosis of CIDP I’m good.. but there are days where the slurred speech, swallowing, muscle wasting etc etc. freaks me out where I think I have a worse diagnosis (als) and I get upset.. I just have to remember after all the emg’s and dr’s (over 12 neurologists) all telling me it’s not that that they have to be right! I can live with CIDP compared to that ANYDAY! I just wanna be there for my kids so badly, and hopefully I’ll be able to be semi active with them!
You must be logged in to reply to this topic.