What should I expect from IVIG?
AnonymousJune 2, 2007 at 1:41 am
Hi everybody. My doctor finally decided to prescribe IVIG for me. I took corticoids for four months and had no effect on my neuropathy. So the doctor told me I had to take IVIG. I am happy because i have a lot positive of expectations due to its healing or symtom-reducing properties. Although I am aware this is a serious procedure, I am not afraid of this treatment, i have a lot of faith IVIG will work. I imagine myself going back to normal and I feel happy!. The doctor also sounded really positive about it he said that considering the characteristics of my neuropathy, I can expect a lot of improvement. In Mexico there’s a doctor that is very recognized and has a lot of experience regarding neuropathies, he agreed with my other doctor on the diagnosis and possible outcome, both were very positive, I was happy to hear what they said, although sometimes i feel healing is a dream too nice to be true. I have a lot of questions regarding IVIG thoug. Sorry is my questions sound silly but i need to know this. I know I can ask the doctor but I won’t see him soon, besides i’d like to have different sources. First, i understand our problem is due to nerve damage, produed by antibodies that attack our nerves. So my question is what the effects of IVIG are? Will it repair the damaged nerves or will it just stop further damage? If it only stops further damage, does that mean that my nerves will recover by themselves? Can damaged nerves be repaired? How? Is there anything I can do, eat, drinki or take to help my nerves get better? How long does it take? Also, when can the effects of IVIG be felt? Is it right after the first infussion or a few days, weeks or months later?? After the treatment, is there any weakness or any serious side effects? I would also appreciate you telling my about your experiencies with IVIG. Thank you so much.
AnonymousJune 2, 2007 at 7:47 am
Sorry if this is long…
I think IVIG affects each one of us differently. I know in my case it took a good 9 months for the IVIG to start giving me energy back but I am now doing things that I haven’t done in ages (planting tomatoes, painting the bathroom, cleaning, etc). I saw my doctor on Thursday and we discussed how I am reacting to the IVIG. I am actually weaker strength-wise now than I was last month. I am still having numbness in my legs, hands and hiney (the hiney is new) but the energy is wonderful. I was told that the nerves may never heal themselves but if they do, I must be patient because it takes time for them to heal and if I overdo it, I will wind up just hurting them more. I have taken the one a day approach. I do one thing a day. If it’s going to the zoo with the kids, that’s all I do, and I do it in a wheelchair. If it’s cleaning, I clean one room thoroughly and that’s it. I don’t want to damage the good nerves and I’m trying to promote healing in the other ones. I have energy about three weeks and the last week I crash and burn. I am going to try and take my treatments three weeks apart so I don’t crash and see if that keeps me on a consistent plane. We’ll see how it works.
I would ask your doctor for some zofran for nausea before you start your treatment. My first treatment I actually threw up on my doctor so she was sorry she forgot to tell me about the zofran. Now I am just nauseous when I get home from the treatment until a few days after. The nurse that handles my infusion told the doctor it’s almost as if we have chemotherapy reactions to the medicine and Dr. Nemeth didn’t sound surprised, she just said yes. Drink plenty the day before and the day of your treatment! Lots of water! I also take benadryl and ibuprofen before my treatment as well.
One of the ladies in my infusion group doesn’t get the energy boost that I do, but her nerves are starting to come back and the progression has stopped with her. She also doesn’t get sick like I do but gets a horrible headache for two days after.
I hope this helps you and I wish you the best of luck!
AnonymousJune 2, 2007 at 1:49 pm
Chronic inflammatory desalinating planarity (CI DP) is an autoimmune disease that targets the Melina sheaths of peripheral nerves. IVIg helps stop the attack. The Melina sheaths act similar to the insulation on an electric wire. When the insulation wears away, the electricity can short out and the current doesn’t flow through the wire. A nerve acts in a similar manner
Each individual seems to respond to IVIg treatment differently. The idea is to allow the melina sheaths time to repair. This may take time. How far and fast you recover is something that seems to vary with each individual.
As had been said, make sure you drink plenty of water the day before. They should give you benadryl and ibuprofen before they start. If they don’t ask for it. I haven’t had any problems with IVIg, but the idea of taking zofran for nausea sound like a good idea the first time you take IVIg.
Please remember, there are not silly questions. If you are concerned about something just ask. You wll find out that many have had the same question and found the answer either the hard way or by asking…
AnonymousJune 2, 2007 at 5:09 pm
Thanks for sharing the picture. What a great tool to use to explain to people what is happening to us.
This site is great! Today I have been down, vomiting and not feeling well I guess from the IVIG on Wednesday and Thursday. When I come on the site I always learn something and feel a little better. Thanks for being part of my new family!
AnonymousJune 2, 2007 at 7:06 pm
[QUOTE=Emily’s_mom]Jim – That is the BEST pic I have seen of myelin. Where did you get it from?
This is where is found the picture
There is also a good picture at
If it errors out, then try [url]www.cidpusa.org[/url] and select the treatment button.
June 2, 2007 at 7:45 pm
I am glad you will be trying ivig. When my ten year old son Kevin gets his ivig, as mentioned previously, we premedicate w/ zofran, benadryl, extra stregnth tylenol. also as mentioned we drink ALOT. One of the most important things we have learned to control reactions, especially the migrane headaches id to make sure the infusion rate is SLOW. Since it is your first time, ask them to spread it over five days. Kevin seemed to have the easiest time over the five day span. I am sure your doctor knows the dosage, but here it is 2g/kg. Kevie is 104 lbs and recieves 95 grams over three days for about 8 hours a day. If they try to go faster you may get sick. Next time Kevin gets his infusion, I think I may ask for the 5 day plan again. The fastest flow rate Kevin gets is 50. He starts out at 12, then 25, then 5o. We also learned to continue medicating not only throughout the treatment, but 24 hours after. Last time, Kevin’s worst reactions happened 6 hours post for about 24 hours. According to some gamma guard info (the name of the ivig company) reactions after ivig are common for younger recipients.
Regarding your question as to how fast it works, as mentioned, that is different for everyone, and I would imagine dependant on the amount of damage you have. Kevin regained stregnth and ability by the second day.
once you get the ivig, the demylienation is halted and your nerves get a chance to heal. About a mm a day. If you are short, great! The trick seems to be figuring out how often you will need the ivig to keep the demylienation under control, therefore continually allowing your nerves to repair without additional damage.
Are you going to do this in the hospital? At home? In a clinic? Well, where ever you do it, have lots to read, comfy pjs, and your favorite pillow! You will be fine and on the road to getting your life back! I am so happy for you!
Sincerely, Dawn Kevies mom 😮
AnonymousJune 2, 2007 at 11:31 pm
Welcome to your new family where we feel what you feel. All of us should be told that there is no cure yet for CIDP, but we do have hope and we can get better. IVIG and other treatments are used because they can bring about an increase in strength and improvements, but even if you don’t feel these, another very important purpose is to try to control progression and when progression is controlled; NOT CURED; we can start to heal. I don’t think we can heal 100% though, some of the damage that was already done is going to remain, how much will probably depend on how severly you were damaged.
AnonymousJune 3, 2007 at 12:59 am
[COLOR=”Red”][SIZE=”3″]I have had IVIG for 2 years for CIDP. It helped immediately — the next day I felt better. My doctor says it is different with everyone with how your body will respond. Thankfully it stopped my CIDP from progressing further . I hope it remains this way. However, I have to have my dose 3 weekends per month to keep my symptoms from spreading. My symptoms were pain and numbness in my feet and lower legs. Stiffness in my legs, and balance issues. I was close to using a cane and eventually a wheelchair. We all have different experiences. Thank goodness I found a doctor to diagnose and treat it aggressively. I hope your experience will be a good one with your treatment. [/SIZE][/COLOR] [COLOR=”red”][SIZE=”3″][COLOR=”red”][COLOR=”red”][COLOR=”red”][COLOR=”red”]— God bless! Good luck with treatment! — John
June 3, 2007 at 11:35 am
I have been doing IVIG since Nov of ’02. I pre-med with Benedryl and Extra Strength Tylenol at home and then a small dose of Solu-medroyl at the outpatient center.
After each infusion, my body goes into ‘flu mode’ for about 3 days where I just feel ick! Then there are also migraines which I find relief from with Exedrin. They used to make these Exedrin quick tabs which dissolved on one’s tongue which worked FAST!
I hope you find relief with the IVIG. I got back about 75% of what I was at before CIDP with IVIG alone.
AnonymousJune 3, 2007 at 11:39 pm
Do you mean what is the process going to be like…Am I going to be Wonderful after infusions, How is this going to help me in the long term?
The process itself is BORING! You may have to work with your docs and fiddle with the pre-meds to prevent nausea headaches and diahreaha… and, other things like rashes that come up…IF ANYTHING feels wrong or strange, SPEAK UP..don’t be shy cause if you don’t take to it and keep toughing it out…it could be bad.
First and most important thing YOU should do is make a copy of the infusion orders from your doc…and keep them…That way, you can be sure and check that what the doc has ordered is what you GET! If anything seems off kilter Ask! Ask bluntly and loudly about what is being done to you, why and how. IVIG is a filtered blood product that has to/must be carefully handled from the mixing/bagging procedures to getting it into you.
Headaches are very common after infusions, they are like killer migraines. Nausea often happens, as does diahrea…I try to A-be sure the rate is done as slow as the doc orders – home and hospital services try to speed things up -often with very nasty consequences. B-be super sure you are well hydrated before infusing, it makes it easier for nurses to get good veins-tho it mite also contribute to the runs…well alternative s/e’s are much worse. C- the ‘runs’ what else can one call them? I tend to eat lite the day before or two days before…less stress that way on the whole system.
Afterwards…expectations? TOTAL RELIEF? Probably not, down a notch or three? Likely -with those aforementioned side effects tho. If you get a rash in strange places? go see an allergist or dermatoligist ASAP – they can prescribe topical steroid creams and ointments that will knock out the itches quickly…trick here is to actually SEE the doctors WHILE the bumps and lumps are present…Do NOT ever let a neuro say they’ve never heard of it! It’s on the prescribing info of any brand of IVIG listed under s/e’s or other effects. Print that out and highlight the parts HE SHOULD KNOW-I mean, it’s there in print…he should KNOW? I don’t mean to sound know-it-all here, but I have had lots of S/E’s and My neuro and staff do know of these and They can be fixed and dealt with…
The most important s/e is headaches, bad ones. Usually some combination of Tylenol and Benedryl helps a lot. After infusions expect to be really sleepy. That is a result of the pre-meds and the infusion itself…I get my infusions early in the day and am worthless for the rest of it…I sleep, but often feel like I’ve had a double-cappacino and well, I’m sleepy AND wide-awake? Semi-Zombie is the best way to put it.
For me Good effects are my pain level goes DOWN about 2-3 notches during/after my first hour of Infusion! Sometimes It lasts for 3 weeks [I get mine monthly] other times it lasts only a week. I try to schedule those things one has to do that require strength and agility and not falling down within the first week after infusion…then see what else happens.
Each of us is different, each of us probably has other diagnosed or yet to be diagnosed aspects that impact on the whole thing…I truly hope it helps you!
AnonymousJune 6, 2007 at 1:39 pm
Lot’s of people have posted about the process of getting the IVIG, so I’ll just tell you what it’s done for me. My major symptom was weakness — I was nearly disabled before I got my first treatment, which was 3 infusions over 3 days in hospital. I started feeling stronger almost immediately. Within a week, I was nearly normal again, although fatigue continues, as does the numbness and “burning” sensation in my feet. I have been getting IVIG on a regular basis for nearly a year now, and I have gotten progressively stronger to where my strength is well into the normal range again. The IVIG itself does not make you better, but for some of us, it stops our immune systems from attacking the myelin so that our bodies can regenerate it and the nerves can work properly again.
I wish you the best of luck and hope that IVIG is the miracle for you that it has been for me! 🙂
AnonymousJune 10, 2007 at 3:30 am
May I suggest you have someone drive you till you know how IVIG will react??
I had such profound reactions I was carpoled for 8 months but I was also very ill from CIDP. The worst one the clinic had ever had. The nurses were new and didn’t have a real clue I later found out.
It can be extremely exhausting to have an all day infusion.
Migraines, nausea and for me constipation from the Zofran. The nurses didn’t believe that I got yeast infections-I did and it was from the IVIG. What ever odd side effects-you know your body. Get prescriptions for all the above. I spent too many days ill on the sofa with crushing migraines/nausea/sweating till someone thought to give me a few med samples that helped.Gee, thanks.
Had to get IV fliuds I got so sick. “Homeagain” has written excellent info. Watch for the drip rate-the nurses will try to hurry your infusion and if the rate is too fast you’ll feel terrible.Speak up loudly-immediately.
I have kept a record of each infusion. Got a journal and wrote down the IVIG brand, lot numbers, solution (5 or 10 %), dates, how I felt that day and later. It really really helped me know how later on I’d improved. No more crutches”’
It took a few months but I feel so much better. We’re all so different. The best of luck.
Dress comfy-I wore baggy clothes and kept a spare set in my bag just in case.My CD player with headphones helped lots too.
After 2 years getting IVIG at the clinic it’s now at home-wonderful. My bed.My house.
AnonymousJune 10, 2007 at 10:24 pm
scheduled yet? It sometimes takes about 2+weeks to get all the paperwork done to schedule your infusion….[get insurance clearances and approvals/schedule times for infusions and be sure the IVIG is available to be infused] Once you are in the ‘system’ things usually go like clockwork. If there are no real bad side-effects, be sure to start and schedule your next appointments ASAP after you see your neuro…who will probably want to do extra blood tests that make sure no problems are happening.
I agree with Limekat, wear very comfy clothes! While she gets constipated, I get the opposite effect and well, try to quickly pull down pants etc with an iv in one arm and either a pump on a pole or a portable one in a tote bag without twisting the catheter itself! Takes time and practice! Maybe a little planning too, as once you ‘feel’ something happening.. well, you can’t always jump up and hit the bathroom running. [In the hospital, I’d had to unplug the machine -had batteries, but, not for the whole infusion] find an unoccupied rest room, get out of the clothes w/o goofing up the catheter and then…] Well, you get the picture.
Whatever, it for me was all well worth it! The headaches are the key issue as they can be the WORST! I take no Tylenol now, just LOTS of Benedryl -enuf to knock out a large animal-one much larger than I am!
Don’t let whoever is doing the infusing switch the brand ordered by the doc…Especially if you have a diabetes background as some IVIG brands are saline diluted and others are sucrose based… substitutions could become a serious issue!
For many it works and you can tell almost right away, for others it takes about 3-4 ’rounds’ or months. During that time you will have lots of blood tests-to check your liver functions [this stuff is stressing in that quarter] and to see if some of your #’s show an increase or decrease in immune aspects. Each of us gets to the IVIG for the CIDP conditions and often other problems as well. We are all different to start with and how we got here is different -each unique.
Please let all of us know how your are doing! Someone here probably has had exactly the same experiences, they’ve just spoken about it in a different way.
Thinking good things for now and the near future.
AnonymousJune 12, 2007 at 1:43 am
Thought I’d add something that happened to several of us ladies. We tended to swell from all the fliuds-my hands, feet and I had to get bigger clothes.
Running to an empty bathroom can be hard-if you have an idea you may need to-them unplug and gallop.Thank goodness for pants with elastic. I bought 4 pair I called my uniform for warm weather and then others for cold days. I had hand IV’s for 18 months. It takes a while to get used to being at the hospital with one.
The surgeon said to see if IVIG works for me BEFORE even considering getting a chest port. Best information I got.
Please consider having someone drive you the first few times-okay??
If after a while the hospital is not to your liking see if your insurance will pay for having it at home. I just couldn’t do any more driving/clinic. I needed a change and I can rest/not worry because I’m already home.
AnonymousJune 14, 2007 at 9:13 pm
Thank you all for answering my questions, for your recomendations and your wishes. I feel very thankful and as many you, i have also found a great site here to vent and to find out i am not alone. Being alone makes everything more difficult. Right now i am listening to a song i really like and i am crying, i am crying because i wish i had never come accross this situation i really nerver imagined, i had always been so healthy… i am also crying because this song i am listening to reminds of something: i may not be completely fine, my health is not as good as it was, but i still can enjoy so many things, i am alive!!.This makes me cry of happiness. Everyday i watch the news and i realize that there’s suffering everywhere, i read about irak and how many people die there everyday that i conclude that i shouldn’t be complaining for i can do something so simple, like listening to a song, and i can enjoy it, i feel life is the greatest opportunity, even if it is sometimes full of obstacles. I hope this thought makes you all feel comforted, like it did with me….
Dawn Kevies mom: thank you for your words, you really sound like a caring, understanding person. Your son and you are in my prayers.
Mnsummer: why do you have to get your dose so often?
Now i would like to tell you somethng else. I finally got the ivig, it all went ok. The nurses were excellent, professional and kind, so was the doctor. I drank a lot of water and the doctor had a saline solution injected troughout the five days the ivig treatment lasted. I didn’t get any headaches, nor nausea. Everything was perfect. I took my last dose on sunday, it’s been a few days since that and i still have not had great effects. Since my neuropathy is mainly sensory it is harder to tell i guess, because sometimes it is difficult to describe what i feel or to tell if there’s a difference. What i can say for sure is that the pain and the sensations are still here. The doctor told me it takes a few weeks for the ivig to take full effect. I will wait patiently for the results, although sometimes when i am alone i cry because i am afraid of the ivig not working.
I would also like to share with you something that is worrying me. I do not have an insurance. As i told you before i used to be so healthy that it never occured to me nor to my parents, that i could get sick. I don’t lnow how it works in the US or in other countries, but here in Mexico you can only be taken care by the public health service if you work, and your company pays a fee to the public health service. Since i don’t work i don’t have an insurance. My dad had to pay for the ivig ant all it involved. This makes me so sad. He’s worked a lot during his life and now he has to spend the money he has managed to save on me. I feel this is unfair. He did not want to tell me how expensive the whole thing was, but i know is was very expensive. He told me not to worry at all, that he regarding to my health he would never doubt on spending as much as it is necessary, but i can’t help feeling guilty….
Thank you all for reading me.
June 15, 2007 at 12:08 am
I am glad you were able to get ivig. I do not know if this option is available in Mexico, but apparently Gammaguard (the name of the ivig company) will help those in need. Perhaps you can ask your doctor for the company information, or the pharmacy that supplied the ivig. Yo are right, it is VERY expensive. I do not know if the billing or charges are the same in Mexico, but in the US, one could not pay for the treatments out of their savings for very long. Please try to have your doctor see if they could look into contacting the company you get your ivig from. If they do not offer a program, maybe you could try calling gammaguard direct and explain your situation. I wish you luck and we will pray for you and all of those on the forum. Dawn Kevies mom 😮
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