I've had my 1st lot of IVIG and it was awful! I was ok until the 3rd day when I developed a severe headache and by day 4 I was vomiting! I'm so hoping that it's worked but I'm not looking forward to having it again! I'm worried about how we are going to cope with the children and work with all this pain? I JUST WANT MY LIFE BACK! My poor family! I still have the headache although the vomiting has stopped. Feeling quite low today. I also have an appointment with a T.N. specialist in 2 weeks and plan to have an operation to treat this other horrible thing that I've been blessed with! As it will be under general anaesthetic I'm worried that this will bring on a severe relapse after IVIG, anyone have any info on this please? I think the reality of CIDP is kicking in and I feel nothing but panic!!!! Has anyone got any answers or words of encouragement for me please? i would really appreciate it. Thanks all x
I can’t help much on the ivig.my doctor wants me to be doing it but i can’t because i don’t have any health insurance so she is doing what she can but not what she wants.i do know the low point .the realty of having cidp can really bring u down.but stick in there.u can get better.don’t let it beat u.if u have any problems go to fourm and ask.alot of us have been where your at.stay positive and strong.
Johnny.mac
When I started on IVIg I had 5 days in a row (loading dose). I think at the time I was as bad as I ever got due to the CIDP so that did not help. By the last of those 5 days (when I look back) I was really at the bottom. The CIDP effects were really draining and most likely the cumulative IVIg dose effect was happening as well. Looking back - don't really know now if I would have wanted even one day more.
Having said that - my reaction to the IVIg was probably reasonably mild in the total (headaches and nausea - both reasonably intrusive that first week - but not bad) - yours is obviously not so mild. The good news is that once you go to the usual (monthly) IVIg the reaction should be much less severe and others will tell you there are ways to prepare to decrease those reaction problems.
The other good thing is that you should notice in the next few weeks that the IVIg effect starts to work. You may not (probably will not) get "better" - BUT you should get an obvious amount better than you are now.
As my Neuro says - you need to live with what you have and make the best of it. For me - CIDP is a strain on daily life because it stops me doing some things and inhibits others BUT I don't let that stop me having a go. Sometimes (perhaps often) I pay the price for having a go - like extra pain and discomfort and a bad night sleep - but then I got something done instead of sitting thinking about it.
So - my message is - be positive, stick to it and climb the mountains that you can. We understand and we want you to look back in a few months and think "Was that me?? How ordinary! Now I am strong!"
Hi Tech 42,
I had Ivig in Jan and like you I had a really bad headache but luckily although I felt really sick I wasn't which was probably because I was given anti sickness drugs. I think it helps a lot to drink LOTS of water while you're having it although I realise this isn't easy when you feel sick. I still haven't been diagnosed but I think a positive thing to think is that you have CIDP it doesn't have you! You will get thru this although I know at the moment you feel like you've hit rock bottom. But hey this Ivig will hopefully make you feel better so that you'll be strong enough to have the op without having a relapse.
Hope this has helped you'll get there, there is light at the end of the tunnell!
Chrissy W
I was severely allergic to IVIG,almost did me in !!! Plasmapheresis was better, finally end up with Chemotherapy,which slowed the condition. Chemo is no "walk in the park" but it stopped the advance of symptoms. I have been stable for almost 10 years..Not all Neurologists are up on CIDP,.my first 2 were not,the 3rd ,the charm!!
If you havn't, seek a 2nd opinion!
I did have a 5 day IVIG treatment 2 months ago. It is quite normal to have the headache and nausea. I had the headache for about three days. The key is to drink lots of fluids before, during and after the treatment. Two liters a day is not an exaggeration.
I like you, I’m a young mom having a truly rough time with this. We have no choice but fight it. Keep on going,we can make it and this monster won’ ever win.
Hi Friend,
I have been doing this for a while.It works.Try and do good things like drink lots of water , eat good food, dont stress , try to get enough sleep and exercise as much as you are able, smile often , think about all the good thing in your life , thank God for your bleesings and seek out someone worse off than you to give some support to.
If you dont feel better after all of thet I will be very surprised.
God Bless Ernie.
oziurn said:
Hi Friend,
I have been doing this for a while.It works.Try and do good things like drink lots of water , eat good food, dont stress , try to get enough sleep and exercise as much as you are able, smile often , think about all the good thing in your life , thank God for your bleesings and seek out someone worse off than you to give some support to.
If you dont feel better after all of thet I will be very surprised.
God Bless Ernie.
So sorry you are going through this! I have CIDP and my first IVIG infusion reaction was extremely severe. I developed Hemolytic anemia that was caused by the antibodies destroying my red blood cells. Make sure they monitor your hemoglobin. I haven’t had another infusion since.
High dose steroids didn’t help either. I’ve been trying to take care of myself and I take Amatriptyline for the nerve pain at night. My doctor has suggested diet and exercise so when I’m not fatigued I move around as much as possible. It’s hard to deal with… I know… but it does get easier once you figure out what your body is doing and what it needs. I don’t have a choice but to find alternative ways to deal with this. IVIG was successful for my CIDP symptoms but not an option , for me, because of the side effects. Drink a lot of fluid and take benedryl and tylenol before and during the infusion. I had fever , headache, body aches, and vomiting with each infusion. It was not a good experience but in the end it will get easier. ((hugs)) ~Laurie
You probably need to slow down the rate you are receiving the IVIG. Also the first dose is always a whopper dose and sometimes the side effects are due to volume as much as rate. Going forward your dose should be smaller (less volume of the drug in your blood) and also ask that they start very slow and ramp up the rate. I had a bad headache the first time too. My neuro put in orders that I had to receive the IVIG very slowly. It made my infusions much longer but after they cut the dose to 40 grams (I had gotten 55 grams the time of the headahce because it was my initial loading dose). They also ran my initial dose in at 300 mls per hour! Way to fast for me. Now I start at 50 mls, then increase in 20 minutes to 80 mls, then in 20 more minutes to 100 mls, and finally at 150 mls and I remain at 150 mls per hour for the whole infusion (originally I was not to go over 120 mls per hour and stayed that way for about a year but just recently my neuro said we could try 150 mls to see how I tolerate it - i tolerated it just fine). Also I dring a lot of water the day before, day of and the day after the infusion. I also take 2 Tylenol and one 180mg Allegra 1/2 hour before my infusion. Since I started all the precautions I have not had any major side effects. I do get a very mild neck ache/headache sometimes but taking tylenol and getting my husband to do a neck/head massage really helps. Other than that the IVIG has worked its wonders. It keeps my CIPD at bay and most of my early symptoms such as tingling, numbness, sore, achy leg muscles and clumbsy hands have gone away. I have my life back. I also have a young child and work 10 hour days and in the beginning i was so scared and felt as you do.... how am I ever going to do this. I have had CIDP for about a year and a half now so am still pretty new to this disease but I have been lucky to be able to receive IVIG and have a good response. It does get easier as others have said. Now that I am stable and feeling more 'normal' I don't think of my CIDP 24/7 anymore. I go about my day and sometimes I pay at night with sore feet and legs or tingling if I over do it but I just take OTC sleep aids and tylenol and I do pretty good. I have CIDP - CIPD doesn't have me!! Good luck and try very hard to take a deep breath, relax and go with it. Anxiety made my symptoms worse. There are other options if IVIG doesn't work but give IVIG another try because it is a wonder drug if your body can tolerate it. Also just a note. I went to Sub Q administration of my Ig for a few months. You don't usually get headaches because you are giving yourself such a small dose more often. I had to give myself 5 grams of Ig on Sunday and then 7.5 grams again on Thursdays. I switched back to IV again because since I don't have major side effects like you do with IV administration I found it to be less invasive on my time. But the good thing about SQ administration is that you give it to yourself in your own home. I would do it at night after my daughter went to bed and sit and watch the news for an hour or two. I even brought the stuff to work with me one day and did it in my office because I didn't have time that night to do it at home. I loved the freedom but hated the fact that I was giving myself an infusion every 3-4 days. It also was a little bit more painful (minor pain but I am a big baby). You have to stick these tiny needles just under your skin into the subcutaneous skin and then the Ig goes under your skin. Since you can only give yourself 25 mls per site, depending on the brand of Ig you use (I used Gamunex which is only 10% solution so I needed more fluid - 7.5 grams = 70 mls of Ig so I had to do three sites of 25 mls on the Thursdays on two 25 ml sites on Sundays). But there is a solution that is 20% called Hizentra. This would require 10% less volume of the Ig needed under your skin so less sites and less time. Talk over SCIG with your neuro if you keep having symptoms with IVIG. It is off lable as Ig has not been approved in treating CIDP because of the large volume of Ig needed but if you can get your dose down low enough and use the 20% solution is is possible and there are others using SCIG that have CIDP. I did it and it kept my symptoms at bay just as good as IVIG. I just didn't like doing it so much and since I have good results with IVIG I switched back. But I told my neuro that if i ever start to have vein issues or issues with sever side effects I would go back to SCIG in an instant! Best of luck to you.
My husband was not able to take the ivig treatments either. Can you give us a little more info about Chemo - did you take it one time, yearly, etc. Any info would be helpful. Thanks
opirty said:
I was severely allergic to IVIG,almost did me in !!! Plasmapheresis was better, finally end up with Chemotherapy,which slowed the condition. Chemo is no "walk in the park" but it stopped the advance of symptoms. I have been stable for almost 10 years..Not all Neurologists are up on CIDP,.my first 2 were not,the 3rd ,the charm!!
If you havn't, seek a 2nd opinion!
Many, many thanks for all your support and information, just have to get my head around this new way of life! Think panic was setting in yesterday! Will keep you posted. Stay positive everyone and take care of yourselves x
tech42:
I experienced the same thing after my first IVIg infusion which was 2 days. That loading dose is pretty hard on most of us. I, too, felt fine the first day or two afterwards but then about day 3 had the worst migraine up the back of my head and it lasted about 10 days! Nothing seemed to relieve the pain until I called my neuro and he got me started on a taper of oral prednisone which helped almost immediately.
The 2nd time I had the headache again, just not as severely and I knew then to call my neuro to give me a taper of prednisone again.
The 3rd time they changed the brand thinking it might be the preservatives that were causing my headache and the infusion nurse slowed down the rate and IV hydrated me before and after the infusion. That helped a lot.
As you can see, every person's body is different and react differently to the disease and to the cures.
Good luck!
Lisa in Michigan
My first IVIG treatments were likewise, awful. The second series went much better. If you are not well-hydrated, have your doctor order 250-500ml normal saline IV both before and after the IVIG itself (during each treatment). This helps TREMENDOUSLY, and make sure you are getting Tylenol and Benadryl before the infusion.
There could be reasons you may not be able to get the fluid (CHF, kidney failure, etc.), but most people can. It took 500ml before AND after treatments to ease my symptoms, and my IVIG infusions were changed to every other day, rather than consecutive days.
Give it another shot. Although it's not going to be a walk in the park, hopefully, you will tolerate the second course better.
I also developed severe headaches like you. I tried pretreatments like Benadryl, steroids, drinking water, saline fluids with IvIG, Tylenol,really slowing the rate down, and anti nausea meds but nothing worked for the side effects. I went on Plasmapharesis and although I had no side effects it did not give any lasting stability for CiDP. Now I am on SubQ Hizentra and it has worked really well. Yes,it can be daunting to stick yourself but it has not given me any side effects except a very minor headache. It takes about 3 hours weekly and I can choose the time and day that best fits in my schedule. I have also tried immunosuppressants such as Cellcept, Imuran,and Rituxan so if you have any questions about those please feel free to ask. All the treatments I have been on just keep CIDP under control but do not stop the disease so I have chosen a different path. I am having Stem Cell Transplant in Chicago to eliminate my disease. If you would like info about it, please ask. I have had CIDP for 10 years. Some years were pretty good but then I would relapse. That is why I did not want to lose anymore time to this disease and I chose SCT. It is not for everyone but for me I think it is my best option. Hope this helps. Mary B. My email is ■■■■■■■■■■■■■■■■■■■
I will also say drinking lots of water and taking the tylenol and benedryl prior to the infusion helps with the headaches after the infusion. I have been getting the IVIG since Feb. I can now walk without a cane. I had a port placement a few months ago and had a general anesthetic it didn't seem to worsen the CIDP. I wish you luck and will write more later.
I am so sorry to hear this. I had reactions to the IvIg after a while. I developed blood clots. I had to go on something different. Mayo Clinic put me on a massive dose of SoluMedrol an Cellcept. Also Neurontin and ALA. It took some time, but I am walking again with a cane and afo's. If you continue the SoluMedrol ask about taking Benedryl and Tylenol just before and then after the IV and drink a lot of water before, during and after the infusion. I really do understand your frustration. It is a lot to go through. My grandkids are the light of my life and it is very hard sometimes caring for them. I usually need help with them. My heart goes out to anyone trying to deal with this and young children at home. I could not do it on a day to day basis after I broke my foot. You need to see about getting into a support group. Even a support group for MS would help. You may get a lot of good ideas that will help you cope better. May God Bless you.
Many, many thanks for all your caring words and info, really appreciate it, coming to terms with it all is very hard but listening to all your stories is giving me the strength to fight this horrible disese. take care all x
Thanks for your response.Sounds like you have had a rough time of it. I am happy that you have found something that is helping, albeit that it is Chemo with all of its own side effects etc..I am seeing a doctor who specializes in Neuro- Muscular diseases only@ the Mass General Hospital in Boston. Seeking out a second opinion is certainly always another option if things don't seem like they are going in the right direction. For now, I have a lot of confidence in him.
opirty said:
I was severely allergic to IVIG,almost did me in !!! Plasmapheresis was better, finally end up with Chemotherapy,which slowed the condition. Chemo is no "walk in the park" but it stopped the advance of symptoms. I have been stable for almost 10 years..Not all Neurologists are up on CIDP,.my first 2 were not,the 3rd ,the charm!!
If you havn't, seek a 2nd opinion!