Getting first IVIG – some questions?
December 17, 2011 at 9:35 pm
Hello everyone!! I am writing from my hospital bed… I am still in diagnositic limbo.. but the neuros tell me my symptoms seem to resemble GBS (atypical presentation), CIDP (but normal emg and LP), or MG (but I have some seonsory and focal permamant weakness).. SOOO they really don’t know
Things got worse this past week, – my generalized weakness dramatically worsened, I couldnt’ walk far, lifting something like a plate felt like 20lbs, and then breathing started feeling difficult.. So they ended up admitting me and starting IVIG for this mystery illness
I have only had one loading dose and am about to get my second… but did yall recieve any other drugs with the IVIG (steriods, immune suppressants etc?) How long did it take yall to notice ANY improvement after the IVIG
I’m so scared that it won’t help me and then I don’t know where we will go from there .. so I wait and pray for the best. .. Thanks for any help, I appreciate it greatly!
December 18, 2011 at 3:37 pm
I am so glad you are getting help! Sorry that you had to get worse though- Same thing happened to me- I started loading dose as well and I got weaker until second or third loading dose then things started to turn around quick. How are you tolerating the IVIG? Slow rate helps alot if you are having side effects. Wishing you a speedy recovery
December 18, 2011 at 5:08 pm
I had my 2nd dose last night and was doing well, they increased the rate quite a bit… and then I woke up with a horrid headache!! It is really bad actually! I am starting to feel a little better, they have iv fluids going now too, I could’nt sit up to drink water with the awful headache! They are going to do the 3rd dose at a much slower rate tonight
BUT I think I am feeling better!!! Yesterday I coudln’t really tell much of a difference, but as of last night when I woke up with the headache, I noticed my swallowing feels “normal” again… I thought for a few months it might feel awkward, but didn’t really realize how awkward it felt until last night when it felt normal again! My speech seems better- the nurses have even noticed… and my strength is also better! I usually take lyrica everyday/night for the tingling/discomfort, yesterday I was still wanting to crawl out of my skin, but last night I woke up for the first time in MONTHS wihtout that sensation.. and no sensation of it today either!!! Sooo.. the changes are mild, but I think they are real, I have felt badly for so long, It seems surreal that I could actually feel decent again.. So I am really praying this will really help!!
I have another LP, brain MRI tomorrow and an EEG/evoked potentials.
Thank yall so much for your help!!
AnonymousDecember 18, 2011 at 6:09 pm
Make sure they really slow the rate down. I can only tolerate a rate of 50; anything faster and I get horrible migraines and chest pressure. The average speed is 100 – 150; most start the infusion slow and then ramp up. You’ll have to assert yourself to keep it slow. For the headache – if it’s really bad – you can ask your doctor for migraine medicine. Regarding “drink fluids” – what most people consider adequate fluid intake pales in comparison to those of us who have gotten “the headache” from an IVIG infusion. You should be drinking non-stop; if you are not getting up to go to the restroom every half hour you are not drinking enough!
PS: my first response to the loading dose was mental clarity; it took some time before I saw physical improvement.
AnonymousDecember 18, 2011 at 8:58 pm
So sorry to hear of your troubles. It sounds like from your symptoms that you have CIDP and not GBS. I am sorry about that, too. My daughter got ivig too fast and got aseptic meningitis. I thought we were going to lose her because she could not eat. Tell them to slow you wayyyyyy down and drink, drink, drink. They could give you a little bit of steroids before your tx to help with side effects too.
December 18, 2011 at 9:39 pm
Thank yall so very much!!! Ugh… Yea the rate was over 100 last night, (i was passed out from the benadryl, so not sure how high they got).. They are talking about going 50 tonight.. I feel pretty crumby now.. body aches, chills headache/spine just hurts, everything hurts.. I can’t tell for sure improvement, but i do not have the need to crawl out of my skin sensation which I have had daily for months and swallowing does seem easier too.. speech a little better. and the nurses are saying my face is less “droopy” (especially one eye).. So thats good news!
I am scared to get my hopes up too much that this will work, but the thought of it actually working makes me want to jump up and down, even though that would hurt really badly right now. the thought of it is very exciting! I pray it helps!
Its interesting to hear everyones different reactions to the IVIG as far as improvement in symptoms too! Since I don’t have a diagnosis, I sure hope that I can at least see some definite improvement, to know whatever i have CAN get better!
My emg’s/ncv’s are clear, so that doesnt fit into CIDP plus my reflexes are normal (maybe a little brisk, but they have been all my life), They will be repeating a lumbar puncture tomorrow and doing evoked potentials.. So who knows. It will be nice when we get an answer, but if that never comes I’ll just be happy knowing that I have the ability to stop worsening and hopefully get better!
I am drinking tons of water.. but when the headache hit this morning I couldnt even sit up to eat.. So they did start iv fluids.. i’m trying to down lots of water before we go again here in an hour or so!
December 19, 2011 at 8:11 am
I am glad you are in the hospital and finally getting them to give you ivig. I was concerned for you after your last post.
Sounds like the ivig is working for you—hope you continue to see improvement and are home for Christmas with your kids. Lori
December 19, 2011 at 8:42 am
Hello there- glad you are seeing some improvement with IVIG – I cannot go above a rate of 60 max for my infusions- also learned by trial and error- I as you know also had normal testing but clear response to ivig- if you do respond to immune modulation ( with ivig) it helps them know that you have an autoimmune polyneuropathy of some sort even if they cannot specifically characterize it – I did not get more definitive dx until I had the nerve root studies since my area of demylenation and conduction block was so high up in the peripheral nerve ( at the nerve root )- I also had the numbness and tingling . If you respond to the loading dose as I did I improved for 7 -8 weeks was about 80% recovered before I relapsed again after which they switched me from dx GBS to possible CIDP. It sounds as if you have a good team in place and you have a great attitude- Keep us posted and here to help!
AnonymousDecember 19, 2011 at 1:06 pm
I’m glad the IVIG is working. It must be so relieving to not want to crawl out of your skin!
Honestly, if it were me, I would tell the dr’s to diagnose me with whatever they wanted as long as they were willing to keep treating. You are improving! And I would think another few rounds of loading doses might be in order.
Make sure they are starting your IVIG off slowly & then ramping up the speed slowly. Also, are they taking your vitals every 15-30 minutes?
AnonymousDecember 19, 2011 at 8:32 pm
bny806 ~ After a long haul getting a Dx of CIDP, I eventually began IVIG. Started with a 5 consecutive day loading dose and the night of day 3, I felt the IG begin its task. I hurt, especially my knees and could feel the inflammation big time. After 3-4 miserable scarey hours the pain went away and so did most of the inflammation. Such a relief has no words.
I very much related to the lack of swallow reflex and some weird vision things…. mine just ‘went away’.
I still get IVIG and can tolerate 240/hr which is higher than most. My biggest problem is ‘the chill’ so I wrap up good for that. Benedryl makes me goofy headed, so I take an OTC version of Loratidine – an antihistamine – called Allerclear and for minor headache acetaminophen. I think Benedryl has a decongestant in it that causes the goofy-head. Maybe your doc/team can speak better about that. I’m not sure why a decongestant is necessary – and never asked.
In any event, y’all will find a combination that works best for you. The ‘early days’ are really the most frustrating but it sounds like you are getting some good care. I think its good to share your experiences with others who have similar experiences. It helps us too. I wish you the very best…
December 19, 2011 at 11:48 pm
thank yall so much for all of yalls replies!!! I really really appreciate it, makes me feel less alone.. and well unfortuantely i am alone… in isolation room now, so my kids can’t visit. ughh
So, after the 2nd ivig I woke up with a pretty wicked headache and body aches chills.. but from what I had read, this was nothing unexpected.. I got some toradol and tylenol and i would feel great again.. this morning felt nauseated, but seemed to tolerate my 3rd and last round of this loadind dose of IVIG.. They had wanted to do a lumbar puncture on me today (my last one was done at an outside hospital and since my symptoms seemed to dramatically worsen recently they wanted new results and more tests) and well
Turns out now I have meningitis.. which I had told my husband about 24 hours ago, I thought i probably had aseptic meningitis.. I read it can happen, but thought it was simply some discomfort and it would go away no big deal, but i guess my WBCs in the csf came back half lymphs, and half polys (so they can’t rule out bacterial meningitis)… ugh.. they think its just from the IVIG but until cultures come clear I have to stay in isolation getting antibiotics … and in more turn of events, my protein in the csf is now elevated though that could be from the meningitis they said.. and also in more turns (eventful day)
my new mri brain came back with a lesion in my right frontal lobe.. my mri 4 months ago was clear.. my neck mri showed a possible lesion on the spinal cord as well.. huh? every single dr has said I dont’ sound like MS… but these guys now think its a possibility, but still a wierd presentation.. though I am a wierd presentation of anything it could be at this point!
So I now just hope I can be out of here by christmas and home..
Anyone been through the aseptic meningitis from IVIG…
the thing that upsets me the most out of all of this is that they tell me I can never have IVIG again!!!!! I’ll have to do PE or something else.. but they said the effects should last for at least a few weeks and maybe we will have some more answers by then.. ugh.. I just pray that I stop worsening and maybe even find answers to all of this mess!
(i tolerated the 3rd dose well – we never went above 50 just to be safe.. the 2nd night- the night I got really sick we were over 100)
AnonymousDecember 20, 2011 at 11:42 am
I’m sorry you are going through all of this.
It sounds like you may have gotten some misinformation about your IVIG. You can have IVIG again…many people with aseptic meningitis symptoms go on to receive IVIG. The dosage & the flow rate MUST be changed though. It is simply a reaction to your meds…a somewhat serious reaction but it can be controlled. Kevin (Dawn’s son) has had aseptic meningitis symptoms after nearly all of his IVIG’s for like…5 years now. He’s just learned to tolerate it. Selah (Pam’s daughter) started having aseptic meningitis symptoms after her IVIG’s & they have switched over to Sub Q. There are options besides moving on from IVIG.
It sounds like you received a 5 day loading dose in 3 days, which probably contributed to the reaction. Some dr’s are suggesting, women in particular, receive a loading dose over a 10 day period – getting IVIG every other day.
It also sounds like you received the IVIG too fast on the 2nd day & the 3rd day should have gone MUCH slower or been delayed by a day. Did they wait a full 24 hours between infusions?
There are tweaks that can & should be made to your IVIG dosing. I have found that many dr’s are too afraid of IVIG. Yes, it should be used with great caution, however, there is no need to freak out at this point & say you should never get it again. You didn’t have an anaphylactic allergic reaction so I see no reason to not try it again & do things slower, with the possible addition of a small amount of steroids, to help prevent any reactions.
As far as the possibility of bacterial meningitis – you are in a hospital & they are the germiest places on earth. But I would be willing to bet you don’t have it & the hospital is just taking precautions. I took Emily to the ER a few years ago. Her pediatrician told me to take her because she had a fever of 102, with no other symptoms & he was worried about a possible port infection. The ER dr was certain she had bacterial meningitis. She was admitted to the hospital, all kinds of blood tests were ran & she was put on heavy duty antibiotics. Turns out she had a regular old virus.
I’m surprised the hospital didn’t do the spinal tap before giving you any IVIG. It only takes 10-15 minutes (if that long) and it would have given them a better baseline. It seems silly to me to give it to you after you’ve received treatment…even though I’m not sure if a loading dose would really affect a protein level so dramatically in just a few short days.
You should ask the hospital to get your last MRI & have the radiologist reading the new ones look at the old ones. It is possible something could have been missed. Did they do the MRI’s with contrast? If yes, then they should be able to see if there is any inflammation on your cranial nerves & spine. Don’t freak out too much about the possible lesions until you know for sure. We were told Emily had a chiari malformation & would need brain surgery before she was given the GBS diagnosis. Turns out her brain stem is like .008 cm’s longer than a “normal” persons.
I will keep my fingers crossed you are home before Christmas!
AnonymousDecember 20, 2011 at 3:33 pm
Perhaps my experiences will be of some help to you.
I had the lumbar puncture done before starting the loading dose. It helped confirm the diagnosis of CIDP.
I had the loading dose over 5 consecutive days as an outpatient at Johns Hopkins Hospital, where I received my diagnosis and treatment. Luckily, I live only 30 minutes away. I developed headaches after two of the 5 treatments. I reported this to my doctor, and he prescribed 20 cc decadron (dexamethasone) intravenously just PRIOR to the administration of the IVIG. No more headaches! I also received the tylenol and benadryl prior to the infusion.
Hopkins also co-administers saline with the IVIG. I would easily use up a large bottle/bag of saline during a normal treatment. My doctor has told me it is the only thing that can be co-administered with the IVIG.
Hopkins also ramps up the speed of infusion in 5 stages, essentially doubling the flow rate at each stage. Stages 1 and 2 last for 30 minutes, stages 3 and 4 for an hour, and stage 5 is the balance of the infusion with a maximum rate of 188 (if my memory serves me correctly). Yes, the infusions did take a while (which I used to read), but overall I was comfortable and fortunately experienced no further adverse effects. Often I had to will myself NOT to go home and do a lot of work around the house but to relax. The Decadron, saline, and 5 stage ramp-up of the IVIG all contributed significantly to the fact that I only experienced headache twice, and no other adverse reactions. Hopkins has a 12 page protocol for IVIG infusions, and it appears that they do as good a job as anyone in administering this treatment.
My maintenance infusions were at 3 week intervals, and it was not until after the second maintenance dose that I noticed improvement. Within the next two maintenance infusions my motor nerves had recovered to almost 100%. My doctor kept me on the maintenance dose for a little over a year, during which the sensory nerves also improved dramatically. About 15 months after a normal and full maintenance dose schedule, he started tapering down on the IVIG, eventually terminating the infusions altogether. This was several years ago.
A conversation I had with my doctor about the efficacy of IVIG treatment for CIDP may also be helpful. He told me that 40% of patients respond very well to IVIG treatment, another 40% show some response, and for 20% IVIG has no real effect.
I hope and pray that you will fall in that first 40% and will respond very positively to your treatment. If I may offer one more word of advice, if you have any question or issue with your diagnosis, may I strongly recommend that you be seen at one of the GBS-CIDP Foundation Centers of Excellence. My doctor, who is a Professor of Neurology at Johns Hopkins Hospital as well as a clinician and researcher in peripheral nerve disease, has also told me that he sees many patients who come to him for a second opinion, and that he finds significant errors in the original diagnosis. He has told me that sometimes more than 40% of the patients he sees has an incorrect diagnosis. There are a number of excellent hospitals such as the Mayo Clinic which have not applied to be designated a Center of Excellence (although I am sure they would easily qualify), but the idea behind the Centers of Excellence program is to provide GBS and CIDP patients with information about medical centers that are known to have the skills and talent available for accurate diagnosis and treatment of these terrible diseases. Correct diagnosis is essential for proper treatment.
I hope this helps! My prayers and best wishes for a rapid recovery!
December 20, 2011 at 6:42 pm
Hi Bny806- I hope that when you read this you will be feeling better- I am sorry to hear about your troubles but agree wholeheartedly with replies to your most recent post. I to had clinical aseptic meningitis ( they did not repeat the LP) and am able to receive IVIG safely every week to 10 days. I also agree with waiting until your studies are all in . Do you by any chance suffer from migraine headaches? If so, your risk of headaches with IVIG is much higher and slow rate is more important. Persons with migraine can also have small lesions on MRI. I hope you feel better and get the answers you need to move on to an effective and tolerable treatment!
December 20, 2011 at 11:32 pm
Thank yall all so very much!!!! I cant’ tell you how much I appreciate yalls responses! I am sitting here in isolation still in the hospital- going insane from boredom and cabin fever, but feeling a lot better..
I had not taken lyrica since the 2nd IVIG infusion.. the paresthesias were gone,.. generalized motor function improved.. well today I started feeling some of the paresthesias come back- already!!! Is that normal???? I am still improving in the generalized weakness. the focal/finger weakness I thought was a touch better last night.. but now seems to be going back again.. maybe it’s just due to me feeling bad all over… ugh
Thank yall so much about the information about the IVIG.. I read yalls responses and asked the attending again about the IVIG… today he seemed to think maybe i could get IVIG again.. but it would be up to my treating physician (he is the hospitalist neurologist), he said it could be risky for developing side effects, but I said I can tolerate uncomofortable side effects if it will keep this ugly beast at bay! So, i’ll have to discuss it with my dr at follow up once i finally escape from here!
I like the idea of spreading and slowing down the IVIG treatments, I got horrible migraines when I took birth control pills.. but since being off of those pills x 5 years and being on asprin daily I don’t get them anymore.. I wonder what the mechanism is between migraines and the IVIG causing mengitis is? very interesting!
Hopkins sounds like they have it down to a great system!!! Depending on how all of this goes we may consider that… I also hear there is a great CIDP specialist in houston (i’m in texas) and he got a very large grant for CIDP research in his hospital down there.. we may consider seeing..
I wish they would have done the LP before the IVIG.. Now the elevated protein (of 90) we are unsure if that is significant or not- is it from meningitis or is it from the underlying issue? Ugh.. i feel like there is still such a long road to find answers ahead of us.. I am just so incredibly worn down right now. I just pray we find something that helps, and also that I can be home with my kids for Christmas- this isolation business is for the birds ! 🙁
AnonymousDecember 21, 2011 at 1:48 pm
How long did they tell you it would take to get your test results back about the meningitis? I would think they should know today & hopefully you can get out of isolation.
It may be stress bothering your symptoms. I know I would be stressed out if I were in your shoes.
December 21, 2011 at 6:17 pm
So glad today finds you feeling better- hang in there . Dont know mechanism for why in persons with migraine are more prone to headache/ meningitis side effect of ivig but it is well reported and my neurologist here at home ( Rochester NY ) and at the mayo clinic have also told me this. I am thinking of you and hoping for healing and getting out of the hospital for x mas –
AnonymousDecember 23, 2011 at 4:31 pm
I am a veteran of about 12 years of IVIG treatments. As well as other treatments for CIDP. I would suggest that you stay as far away from the steroids as you can, the side efects are worse than the benifits. I have had IVIG off and on for about 8 years and at times I will show a marked improvement and others not so much. It does keep the CIDP from advancing and keeps it in check.
As for the headaches you have to take control of the flow rate yourself and more or less force them to give it slow. Some nurses are in a big rush and that will cause you some really sever problems. Remember you are paying them and they work for you. I drink a lot of coffe as well as water and that also helps. Headache medication such as Excedrine migrane will help a lot. You well have to sent someone to the drugstore and buy it as all the hospital give you is Tylenol and that is useless. Also if they are not predoseing you with Benadrill get some of that it will also help.
Hope this helps.
December 24, 2011 at 11:11 pm
Thank yall all so very much for yalls time!!! I’m free!!!!! I got out yesterday and couldn’t get away fast enough and home to my kiddos!!! Cultures were of course negative, but man those antibiotics were making me feel AWFUL!!
I think I am feeling better since about last night from the IVIG, but I am far from feeling back to “normal”.. the improvements are minor which I wish they were more obvious- hopefully within the next week or so I’ll feel even more improvement, so that I can for sure know that what I have is Manageable/treatable.
Thank yall for the info about predosing/rate control etc… I tolerated that 3rd dose no problem, when they never let the rate go above 50.. I was already feeling so much better from the Headache and side effects by the time they told me I had meningitis… what an or deal! I’m not sure where all of this leaves us.. we are waiting for more test results to come back and follow up appointment along with see how my body responds to the IVIG.. at times I feel pretty run down still, it’s been a rough week!
Hope yall all have a great Christmas, and again thank you so very much for all of yalls help!! It means so much to me!
December 26, 2011 at 11:38 am
I am glad you are home! Rest up and hope you get answers soon!
December 26, 2011 at 10:34 pm
glad you made it home in time for Christmas 🙂 I hope things improve for you and you get some answers soon.
December 27, 2011 at 11:22 pm
Thank yall! Things MAAAAAYYBEE a little better, it’s hard to tell, and then part of me wonders if it’s just placebo effect of me just thinking it’s better.. I do think though I am mildly improved, but must say it’s not the reaction I was hoping for… I guess I was hoping that suddenly I’d be able to use my fingers and none of my muscles would be weak anymore .. ha.. silly I know.. at least I don’t think i’m any worse.. so that’s good! My generalized muscle weakness seems a touch better and tips of fingers mildly improved as well as speech. No answers still..hoping some bloodwork will come back in the next week or so and we can get answers and get a treatment plan set up too. Thanks so much for all of yalls support and I hope yall had a Great Christmas!
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