Does anyone have Kaiser insurance and is receiving IVIG for CIDP? I am considering in obtaining Kaiser insurance next year. Due to the fact they are HMO and try to keep medical costs down, I wanted to know if will treat me with IVIG and not try to treat me with something cheaper like steroids, which I absolutely do not want.

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…

I get Privigen 10% 25 grams every ten days. Been getting this amount and frequency for almost the last 1 1/2 years. Tried to wean down to every two weeks, but became weak (mostly felt in my legs and thighs). My doctor says he needs to wean me down occasionally to prove to my insurance that my body gets worse after weaning down the IVIG.

I get IVIG monthly.

I feel weaker as the month goes on and more tired.

Just after IVIG I feel like crap for 2 or 3 days then I feel almost normal, or I guess my new normal.

I can’t do what I used to but I try to enjoy what I am able to do.

I started out on 0.4gm/kg for 5 days in Nov. 2009; then once/week for 2 months. I was doing so well, I was changed to every 2 weeks, but I relapsed. So, back to every week for 3 months. When I did well on once/week, I was trialed back to every 2 weeks. This was done twice already, but I relapsed both times. It took me 2 months to feel normal again. Currently, I am on every 10 days now, and this seems to work for me.
Does anyone have a low WBC due to IVIG infusion? My WBC is 3.55–normal is 4.80. I haven’t been sick though for almost 2 years while on IVIG infusion. The antibodies are probably protecting me.

Hello, I was a work out junkie, I worked out 6days a week. I Was 6’3 260 with 7 percent body fat. At first my left pinkie finger started to tingle, then my feet, this was March of 09. By July I could hardly walk Or pick up my 5 month old son. My Nero was stumped he said all the tests were normal. My emg wasn’t ok though. In October I told The local Neorologist I wanted a second oppinion by this time I had lost 35-40 lbs of lean muscle. I was starting to think i was going nuts. I got my Diag Oct 26 2010 @ Uof M hospital
I started IVIG on halloween and again on the next day, It was called my load dose. I started to see a real benefit In Jan 2010 from the ivig. After that I stopped taking all Meds. I now get IvIg once a month and am down to 80 mg from 100. I Eat very healthy LOts of raw veggies, And again no meds. I am back to almost 100% Of course i cant lift weights like i did before but i have little to no pain and i can jog. IVIG will work for you.. Keep a POSITIVE Mind set..Let nothing hold you back..God bless you…Kyle

I get Privigen 10% 25 grams every 10 days. Have been getting IVIG for the past 16 months. I was getting it every week for 6 months. When I was changed to every 2 weeks, I became weak and had to restart every 10 days again.
The rate is adjusted according to side effects. They start me out on 30 ml/hr for 1/2 half hour, then 60 ml/hr for 1/2 hour, then 90 and 100 ml/hr for the remainder of the infusion. I take my own Benadryl 25 mg and Tylenol 500 mg by mouth. I’ve stopped taking Benadryl because it made me sleepy during the infusion and for the rest of the day.
I get CBC and complete metabolic panel drawn every month. CMP tells how your kidneys are functioning. Also, it includes electrolytes, glucose, liver enzymes.
Hope this helps. Good luck.

You most likely will have flu like symptoms during your load dose, It won’t last long. Remember You are the boss, tell the nurses to give it very slow. I once was given my Ivig to fast And i got the worst headache of my life. I used to get 100 grams x2 per month, Now i am down to 80 grams once per month. I no longer take any pain meds or any meds for that matter accept IVIG. I Eat a very healthy diet..Lots of raw veggies And do my best to exercise at least 4 times per week. I have gotten used to the pain and tingling, It now feels normal accept for the cramps in my calves from time to time. Our Father gives us nothing that we cant handle.God Bless you and I wish you well with your load dose…Kyle

I get a slight headache but i have been doing ivig for 17 months. I did however get flu like symtems during my load dose.. I believe it will help you…God bless and good luck..Kyle

Yes IVIG helps me a lot.

Without it and the gabapentin I would not function

Sometimes it takes several treatments of IVIG on a regular schdeule before you begin to see an improvement.

Hang in there!

When you saw your doc did you ask about IVIG?

Did doc mention it as a possible treatment?

the hot tub or warm baths really help me.

I sleep with rice packs, that I put in microwave and heat up

take care

Sometimes it takes several treatments before there is an improvement.

Also you need to take it frequently as it does not last a long time.

I take it every month, some people have to have it every other day or every week.

See if you can have a chat with a doctor that is knowledgable with CIDP and IVIG

Good luck,
Rhonda

Just for grins, I did a little research. Baxter IvIg solutions contain app. 8.5mg Sodium to every delivered ml of IvIg. If I’m doing my math correctly, and the web is correct about the common dosing of IvIg, that means you’re getting about 1500-2000 mg’s of extra sodium in every treatment. That’s an entire day’s worth of sodium. Enough to make your ears ring? Just a thought. There ARE brands, according to the web, that have no added sodium, or that don’t use sodium in the formula.

When I first started getting IVIG I had it every three months.

I would feel great and then toward the end I couldn’t do anything but lie in bed in pain, counting down the days until next IVIG!

After much reading on this site and talking with people I convinced my doctor to switch to monthly infusions. Boy am I glad I did!:)

I now go every month and I am stronger and can do more.

I would recommend the once a month idea. Talk to your doctors, tell them what you think and remember to drink lots for two days before IVIG. I also take Tylenol and Benadryl to help reduce any side effects!

Good luck,

Rhonda from Canada

Dawn,

Keep me posted on how you do with the 70 in one day. You mentioned you get the 35 ml in 2 hours. How fast does it go in?

You are getting IVIG every two weeks, that is a very aggressive treatment program. You might find that you would be in much worse shape if all of a sudden the IVIG were removed. I am guessing that you have the relapsing/remitting form which 60% of people with CIDP have. Usually people with this form respond well to treatment & live fairly normal lives. You might find out you have more symptoms when they start to spread out your IVIG, once a month is more common for it to be administered, as it is very costly. I am betting you do have CIDP, especially if the IVIG is working that well for you. Many on this forum have the chronic progressive form, which doesn’t respond as well to treatments.

If they have dx him with CIDP, then why not give him another round of IVIG? It oly stands to reason that if he has CIDP he must be on some type of ongoing treatment for him to get stronger, than maybe he could have the surgery. When I was at my worst with CIDP, I had a personal care manager assigned to my case, & my husband’s company is self-assured, as they are a huge steel company. How old is he, old enough to be on Medicare?

To K.C.’s MOM (take like a grain of salt, as I am not a medical professional)

If your treatment is IVIG, it is also given to MS patients by their doctors too, so if that is your treatment, you are essentially being treated for both maybe especially you sound like the nature of your MS is relatively benign. Not many doctors will treat MS without a good bit of burden of disease. It could be benign and the treatments not so good and very expensive. IVIG is not a cure. I know of a woman who had no burden of disease until she was treated with a CRAB drug.

I have found this in several articles that both diseases are treated with it. but because there isn’t as much info on C.I.D.P. as there is on MS, I found it under the IVIG search on it’s treatment. MS is more common and still I bet there are many out there especially in this state that are not diagnosed with anything but “a little peripheral Neuropathy.” I guess a little peripheral neuropathy gave me a whole lot of disability with my brain. I have terrible cognitive dysfunction which is another thing that is supposed to be unusual along with lesions in the brain, for C.I.D.P.

We have a cluster in the area around where I live, of not that big a number, but big enough to be alarming since it is a small cluster but considering the small pop. it stands out. we are in very small rural areas close by each other. Yet on the map of state cases, we would have to have a high percentage of affected, because the state number is so low. I believe it is under diagnosed and under treated. Everybody, even the medical staff, will tell you it is true here that the state ins. co puts pressure on the doctors not to diagnose it or treat it..

I haven’t had the pleasure yet. Is the procedure an after hours thing? Can someone work the next day? Is it done in a hospital or office evironment? How is it paid for? Is it to help with the symtoms or the the disease? Just curious, it could be next for me?

Hi,
You should find out if the brand of your last IVIG was changed without your knowledge. It’s never happened to me, but I know from past posts that you can get bad reactions to brands.

Kelly,

Has your dad been offered IVIG?

Have they checked his spinal fluid to see if it is high in protein(one test to see if it is CIDP)

MRI?

Thinking of you and your dad,
Keep searching for answers don’t give up,

Hugs to you all
Rhonda from Canada

I used to go every three months but by the time I got my IVIG I could hardly move.

With the advise and encouragement from the wonderful people on this forum I went back to my doctor to discuss monthly IVIG.

I am doing much better having it every month.

By the way I am 44!

Go back to your doctor and ask about the age thing…does the doctor have information about why “at your age”!

Have a frank and open discussion and tell your doctor about this site and that many people are having IVIG monthly and you would like to try it.

If that doesn’t work then get another doctor.

Good luck,
Rhonda from Canada

[QUOTE=J.Dennison]Is it just me, or does 30 grams of IVIG for 5 days, sound like a lot? I am
5’10” and 160 lbs.[/QUOTE]
i am on 150 grams over 5 days every 6 weeks for the last 5 years .just started rittuxan nero wants to pull back on ivig ,so its wait see

Jim,

I agree. In my opinion you are not receiving the proper amonut of IVIg. These are my recommendations:

1) Talk with your doctor and get the amount increased to 52 grams every 4 weeks. This is the first step.
2) If no improvements with the 52g every 4 weeks, then go to every 3 weeks, with the 52g.
3) If no improvements after the 3 weeks, then go to every 2 weeks, with the same amount, 52g.
4) If no improvement after the 2 week regimen, then go to every week with the 52g.

Give each step about 2-3 weeks to show signs of improvement. However, we must all remember not everyone responds the same to all the different therapy treatments available.

Regards to all.

Jethro

I have CIDP and I go monthly to have a blood product called IVIG.

It helps slow down the attack of the nerves.

Perhaps this mans doctor could somehow get in touch with doctors that know more about CIDP and how to treat it.

I do know that there are many doctors but don’t know the best way to get in touch with them…perhaps someone else could help out?

I also take many pills but one pill that helps with pain is gabapentin.

Good luck, and it is very nice of you to help this man out!
Rhonda from Canada

I would call the number on the back of your card everyday until they are tired of hearing from you. I might do the thing that was suggested about starting ivig before it is approved. If you look into the literature, cidp is one of the only diagnoses that has been approved by the FDA for ivig automatic approval. I am so glad with the healthcare reform and everything that it is. If the govt. ever comes along and says that my three year old cannot have ivig because of the cost, I will carry her cute little self into the floor of the Senate and let them see her not be able to walk. My husband and I have already decided that we will take a trip to Washington DC and we will USE our daughter as an example to help EVERYONE. They can say no to a 50 year old man but I don’t think they will when the see a cute little 3 year old girl with pigtails! Call your insurance.

That is great news about the IVIG coverage.

Hopefully you will get some answers about the other problems you are having.

Hope the IVIG continues to work for you.

Take care,
Rhonda from Canada

I have been receiving IVIG for about two years now. I began treatment three months after my first symptoms appeared and with the diagnosis of “maybe CIDP,” but the first treatment had a disappointing result with no effect whatsoever. My neurologist then referred me for a nerve biopsy and consultation with a specialist in neuromuscular disorders who indeed thought it was CIDP and had me continue with monthly IVIG at the loading dose of 2g/kg. My condition still continued to deteriorate, however, for three more very long months before it finally stabilized. Since then, I have been getting IVIG at the maintenance dose of 1g/kg, Gammagard, the same brand you say has been ordered for you.

As I understand it, the IVIG has kept the inflammation in check, which has allowed my nerves to heal, although very, very slowly, and I have made considerable gains in sensation and muscle strength and functioning. Eighteen months of weekly physical therapy has helped greatly, but I still have much room for improvement. Neither of my neurologists will say whether my progress will continue or not, because this illness is just not predictable. Following my treatments, I sometimes have minor headaches or flu-like symptoms, not as often as I did in earlier months, but they are very minor, hardly worth mentioning. I pre-medicate with hydrocortisone, tylenol, and benadryl. IVIG is probably the “cleanest” treatment for CIDP, with the fewest side effects and the lowest potential for complications. Still, I had one very weird episode of visual hallucinations one evening after my treatment – 45 minutes of brightly colored, pulsating, geometric shapes in one eye – that were diagnosed as an ocular migraine, due to a blood vessel spasm in the brain, a benign event most likely caused by the IVIG. So, though you never know entirely what to expect with this illness, IVIG has helped many people as it has helped control my CIDP, and I hope it works for you, too.

Good luck,
Gary

Very well explained Kelly.

Hi,
I did respond to your email to me and sent it to your personal addy. If you have any more questions just email again.

Hello everyone,
I’ve been diagnosed since 1996 and have been on every treatment protocal used for CIDP and some outside the box, the most recent trial was Tysabri, the MS drug. After 3 months I saw only decline in my condition so the neuro decided tho give me a PE one week prior to Tysabri, and IVIG, 20 gr the day after the Tysabri.
The day after the IVIG (which was used without success when first diagnosed) I noticed a few tingling sensations in my legs and some slight muscle twitching. I had a several day “surge” of energy, but attributed it to the PE and IV Solumedrol. I had another low dose of IVIG again on Thursday(with no PE) and have again experienced some additional tingles and twitching in my leg muscles, along with an energy surge that is still with me.
Has anyone else experiened this and could it be a sign that the IVIG is working? My neuro says that since it did not work in 97, it can’t work now. Has anyone gone off IVIG to another treatment and returned to IVIG with success? I’m thinking of asking my neuro to consider a higher dose or a more frequent lower dose od IVIG for a couple of weeks to see if this perceived response is real or not. His current plan is to return me to PE with IV Solumedrol once a week.
Any thoughts are appreciated. Thanks,
Fred

Hi Cathy

I walk “ok” by myself. I use a cane from time to time (mostly when I want to let other people know that there is an issue), but have never needed a walker. My feet are dead in places, have no reflexes or sensation to pain, and yet also have very bad pins and needles and electrical shocks. It makes for an odd mix.

When I walk any sort of distance, afterwards I have horrible neuropathic pain. In the morning my feet are stiff and dead, it takes awhile to wake them up (like the rest of me!). I trip and fall easily because my balance is poor, and wearing high heels is history!! (sniff — I love shoes)

My hands are somewhat the same. I used to have lovely handwriting, but I can’t write for more than a few minutes without severe pain.

My neuropathy is very painful, so I take quite alot of pain meds (Neurontin, Tramadol, and OxyContin). They give me some relief. I have an appointment at the pain management clinic this afternoon — they are great, and always are looking for ways to try and relieve the symptoms.

Hope that you find a treatment that helps. I found that the IVIg has helped — it can take awhile to feel any real change, apart from increased energy (which is great!). I don’t get any side effects from it other than a headache and the need for a nap after my first day of infusion.

I think that the pp “cleansed” my system of bad antibodies. I improved alot after that, but I would say that now my bloodstream is probably back to where it was with all the crap in it. 🙂

Debs

For most people, how long was it before you noticed a difference after your 1st IVIg loading dose?

Hi Deem,
Well, funny you should ask about this. We wonder about the same thing all of the time. First, I was wondering, are you currently on the imuron and steroids? I guess you could assume (if you are still on the imuran and steroids) those drugs are helping to hold you and the ivig is a little extra if you will. Those two drugs supress the immune system and ivig is thought to flood the body with antibodies, so they both do different things. I guess if you are on the other drugs, you would notice stability without the ivig. (just my thinking) So I guess if you are doing well while on the other drugs, I would give the every four months a try. Technically, anything past 42 days is going without ivig since it only has a maximum life of 42 days. If you ARE NOT on anything else, I might be hesitant. Once you notice a symptom, the process has already started long before you felt the symptom. Any progress that you made in healing (mm a day = to 14.37 inches a year) gets wiped out and you start from scratch, not to mention the fact that you may not get back what you have lost again. Kevin currently is on loading dose once a month. From past relapses, I would say that he could go 4 1/2-5 months with no symptoms and then the six month it starts. So we are trying to flood Kevin’s body with ivig (good antibodies) in the hope that his immune system will reboot, or re-recognize the right way to get rid of the auto antibodies eventually. We went to an immunologist independently of our neuro just to make sure that another doc felt the same way, and he was in agreement, he actually felt that we should continue the loading dose for a year as opposed to our neuros plan of 8 months. then we will up it by two weeks for a year at a time. So six weeks for a year will start in November. Our goal is to get the immune system to work correctly in 3-5 years spacing it out each year.
In short, if you ARE on the other drugs, maybe you could try the loading doses every 4 months, if you are “NOT, I might reconsider if it were me. Good luck and I am so happy you are doing so well, it is most encouraging!
Dawn Kevies mom

I just happened to see this post & yes, I have been off of IVIG since Dec of 2002. But that is because it was not working for me & I needed something stronger. I did 9 months of massive cytoxan infusions in 2003 & have not had any treatments since then. But I am left with residuals: I need to wear AFOs all of the time to walk & my balance is poor. I also suffer from the fatigue that so many of us deal with on a daily basis. I hope you can manage well without the IVIG, but I would rather be one who the IVIG actually worked for. Good luck…
Pam

Hello Deem,
It’s good that you will start a maintenance after the 5 day series of IVIG. If you feel like you’re having more bad days then good days, then your doctor should move the infusions in closer, once every two or three weeks. And another VERY IMPORTANT PURPOSE of IVIG is to just CONTROL PROGRESSION, so it doesn’t mean it’s not working if you don’t start feeling stronger right away. What you are looking for to know that it’s working is feeling the same all the time, with no or very few relapses. And some of us, like me, don’t feel any ill-effects from IVIG, so that is normal. When I was getting IVIG, I could have mine run at the fastest drip and since I felt fine, I often wondered if water was being infused into me.

When you are ready to come off prednisone, it should be weaned very very slowly, how slow depends on the dosage you are on. I was on a very high amount and it took me almost a year.

Good luck witrh this round of IViG. I reacted to it when I tried several years ago, and only responde to palsmapherisos. I do recall the Benadryl helping durin gthe IViG. 🙂

LaMeka,

I started my infusions a little each day for five days. I felt like I had the flu after the five days but soon felt much better. Now I take the infusion one day a month over a period of about 8 to 9 hours. On one occasion my IG brand was changed and it made me feel awful. From that day on I always check the bag my self before they start the infusion to be sure it is one of the Gamma products, otherwise I refuse to accept it. Now, I look forward to the infusion because it improves my condition so much. I encourage you to continue the treatment for awhile to see if you adjust to them.

Now, as for others not seeing any visible sign of your illness, just forget it. It’s hard from time to time, but that is another adjustment you will have to make. I found that the Forum is just the place to go for some comfort and understanding. We all share in the experience of not being understood and there is very little sympathy out there. Good luck to you and feel free to call on me when ever you feel the need.

Zack Fisher

Hello,
IVIG’s were my primary treatments, but because I was being mis-diagnosed, I did not realize something chronic was wrong with me until I started holding onto the walls, counter-tops and anything to stay on my feet, seven to eight months past early on symptoms. The IVIG’s were not started until sixteen/seventeen months later because three neurologists told me I was hopeless. I don’t think that I will heal from the damage a year’s untreated progression did, but today I am no longer progressing or relapsing. The closest to a cure you can get. Was I hopeless!

Hello Bonney,
I have been stable, no return of progression or signs of a relapse, for almost four years now. I no longer need treatments, other then physical therapy and diligent exercising. IVIG’s were my treatment and I received them for about four years. I no longer remember the amount of IVIG’s I received, but I do remember that during the first year and a half to two years, I’d pack a breakfast and a lunch to take with me. I’d go for the infusion in the morning and it would be dark when I went home. Through trial and error, my doctor and I found out that I did well with a maintenance of every two weeks and again through trial and error it was found that I did well with just three bottles, which I think I’m remembering, dripped for an hour each. So, so from being an all day happening, I was at the hospital three hours.

If you’ve tried to be weaned off the IVIG’s and you start feeling worse, my opinion is that you need to stay on them because that is what’s keeping the progression CONTROLLED. I was able to end the IVIG’s because my progression stopped.

Hello Monica,
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.

I am certainly no doctor, not even an expert on CIDP, but I have been reading your posts for quite some time. If I get it right, the question is whether he had GBS & made a good recovery (with residuals acting up when he overdoes it perhaps?) Or could he have CIDP, thus the need for continued IVIG & more EMGs. Now we are talking about a child here, one who apparently went over 5 months with no major symptoms after his first IVIG?

Having raised a son with severe spina bifida, I hate the thought of any unnecessary precedures being done, especially on a child. I can’t tell you how many experimental procedures & surgeries I said no to while my son was growing up, & at age 26 he is so grateful. My thoughts are much like yours, let your son be a normal boy unless he begins a serious decline in his strength & stamina. If he truly does have CIDP then IVIG can be given at that time. But if he had only GBS, then he will probably be just fine as long as he rests enough for a full recovery.

I did not post this lightly, I have wanted to respond to your idea for some time. I can’t bear the thought of a child having a lumbar puncture & EMG if it isn’t absolutely necessary. I had 3 of each & they were not pleasant. Sometimes as a parent we have to be a strong advocate for our children; also we are the ones who live with them on a daily basis. No matter what this neuro wants, you are still his guardian.
Pam

Ironically, I just recvd. Kevin’s bill for his 3/12 3/13 3/14 stay. For three days worth of ivig, the bill was 49,986 $. The total bill was $56,546. The discounted insurance amount that was actually payed was $16,666. What a difference. Today I was setting up Kevin’s at home infusion set for tommorrow, and I was speaking to the pharmacist regarding availability and price. She said obviously the generic companies charge less, but that the larger companies charge more because they know they can get it. IVIG is used for many other purposes’ other than extreme medical need, such as fertility issues, people traveling out of the country and they want to boost their system and many other reasons. She said that insurance obviously does not pay for these people and that these people actually do and can afford to, pay for it themselves. I imagine that Gamma Guard knows what they will get from the insurance and what they can get away with charging the independantly wealthy. I also spoke with Gamma Guard directly when having to answer questions about a reaction Kevin had and I asked about the high cost. Apparently, Gamma Guard will not let anyone go without the ivig if needed and they will provide the ivig if the financial criteria is met. How easy is it to make that claim come to fruition I don’t know, I just thought I would pass that on. Dawn Kevie’s mom:o

Hi, besides tylenol and benadryl, my son also premedicates with zofran, he always throws up. We start with a flo rate of 25, then 5o, and then they went to 115. He could not handle 115, so they stay at 50 so that the side effects are not as awful. We also will be drinking this time, as I learned that from this forum. (this will only be our third infusion) Good luck, and you will find all the help you need here from all of the kind experienced people on this site. Dawn:o

I started taking IVIG treatments last August. They are billing $127,000 per treatment. The CCU nurse’s fee is $9,000. All in all, it’s $136,000 per treatment and that won’t even cure me. Just get me comfortable with a little more energy.

Compaired to what I read here I must have a mild case of CIDP as well. IVIG does the trick for me, once every eight weeks. I get tired the last week before my next infusion but I consider myself blessed. Don’t be too quick to give up on it.
My doc doesn’t do pin ***** and I haven’t had any tests since the diagnosis. He just does simple tests to check the strength in my arms and legs. Good luck and stay in touch!

Hi Tim / DeeDee,

Does your insurance pay for the additional IVIG treatments? My brother said that his initial five day treatment was $37,000 dollars. So is one treatment $7,500 dollars? — wow!

Jann

Hi Tim,

I’m wondering if your neurologist treats all his GBS patients with the once a month IVIG treatment for a year — ??? — I think it’s the best way to learn is to compare notes with how each doctor approaches / handles their therapy.

I hope you get to go to your appointment — the ice storms are no fun. I live in Texas so I’m pretty familiar with what the ice storms do can do — we don’t get them often, but when we do – ugh.

I do hope you get to feeling better — and keep us posted on your progress / treatments etc.

Best wishes…
Jann

Hello Claire,
I have CIDP, the chronic stage of GBS. We are all different, what works for one, may not work for another, so you’ll get positive and negative responses. IVIG’s are often given as a maintenence, rather then a one-time treatment. I was on IVIG’s from 1999 to 2003 and I did very well with them. I was getting them one day every two weeks. I stopped progressing and no longer need medications. If you have had IVIG’s and you and your doctor feel they helped, I would go on a maintenence.

Both Carimune NF (3g, 6g, 12g) and Panglobulin NF (6g, 12g) are Powdered for reconstitution and contain sucrose.

I know there has been a shortage for sometime. It is scary and sad. A friend of mine has told me she has been obtaining hers through ebay. I did not believe her, sure enough there it is. Gammagard Liquid 25 gms. I’m thinking of getting a couple of doses just so I can sleep at night.
Hope I was of help to someone

it is interesting to read about ivig in the US in particular especially regarding costs etc. I was treated in a public hospital in a country town. In Aus we have free health care as well as private health insurance where you can choose which hopital, doctor etc. Even though i have private health ins we live in a small town so went to the local hospital. They then transferred me to the next town, also to a public hospital. IVIG was the only treatment mentioned. I have heard stories about doctors refusing IVIG for cost reasons but i never had this problem, despite being in the public health system. (my 4 weeks in ICU cost $35000 just for the bed i was told!) I was in a coma for 5 days while they gave me IVIG. It obviously worked as recovery began once i was conscious. I was on a ventilator, had a central line, catheter, NG tube so whether one is more invasive really wasnt an issue for me!
Like other people have said, recovery varies so dramatically from person to person it is hard to say if the type of treatment makes any difference. You have to avoid comparing one persons recovery to another … i was also totally paralysed including my face and was walking in 5 weeks, totally unaided in 7. I often feel guilty reading other peoples stories – why was i the lucky one to have such a good recovery when others suffer such a long and bumpy road to recovery. I dont think there were any factors in my pre gbs life that helped me or made my odds any better – i beleive that my rapid onset / severe case / MF variant were factors but that is just my opinion from reading other peoples stories.

I had three days of IVIG with no side effects at all. Hope you have the same result.

i cant tell you much about the actual treatment as i was in a coma the 5 days they gave me the treatment. Not exactly sure why – i can remember them telling me i would be out of it for 5 days so maybe it was just to give me the treatment. Anyway, sounds good that i missed all those terrible side effects. At the time i can rememebr thinking “bring it on”. Maybe i thought i would be miraculously cured when i woke up.

I cant remember how long it was after i “woke up” that i started to improve but it was definitely within a couple of days.

Just to let you know, with my mf my vision was the last thing to come back (first thing to go last thing to come back). It took about 5 weeks to get my peripheral vision back. My double vision righted itself a week after i left hospital – literally overnight. These things can take time but they do tend to come good eventually.

Good luck with everything – he is so lucky to have you.

After 2 5 day rounds of plasmapherisis I made great recoveries that lasted about 4 weeks. After my recent relapse and an official dx I underwent a series of 5 treatments and now am on weekly maintenance plus 80mg of prednisone. I began noticing improvments from the IVIG about a week after the first dose. The most recent relapse has me wheelchair confined but I am positive about the progress – I can now bend my leg with little asistance and can use my hip flexors. No one said recovery was easy – I think my body finally gave in after 3 acute attacks in 4 months, now the Dr. is trying to get me back as best as possible and keep the next attack away. Trial and error I guess. I have one Dr. that told me to remember that medicine is an art NOT a science.

Could she have gotten a different brand of IVIG the second time? Or is it possible that she has CIDP & not GBS (CIDP meaning the chronic form which is relapsing/remitting.) I was just curious as to whether or not they have tried any steroids on her, as these usually help somene with CIDP, but not those with GBS. Also, if she has had IVIG after being dx with GBS, then why haven’t they tried Plasma pheresis? If you could tell us how old she is & what her coniditon was right before she became ill that might help us a lot with our answers. Maybe they feel that PP might be too intrusive for her?
Pam

Hello Kat,
I was able to pull up home infusion threads from old forum, but they were only talking about how it was done, not gave their provider.

Maybe this will help, I’m not giving you links, so maybe I am allowed to post just names. I found a directory in a google search, you can find these places same way.
LifeCare Solutions, Inc.
Cresent Healthcare, Inc.
Capitol Home Infusion, Inc. (and that is tol not tal)
Critical Care Systems, Inc.

These are all in USA, don’t know if they’ll ship to China.

Great article..thanks. I just went through IVIG last week and trying to get over another occurrence of my CIDP condition.

Nancy (Italy)

Hello Cheryl,
I should be able to say something good about IVIG’s. I received them for four years. I am doing well now, no longer progressing. I was given gammagard. Some of us have problems with IVIG, some of us don’t. IVIG’s can and will bring about improvements and and increase in strength, I have read members saying they feel better. BUT, IVIG’s have another VITAL purpose, they can JUST control the progression, you won’t feel too much different and when you are no longer progressing, the body can heal.

Hi Meadow,

I agree with everything Jerimy has already said. Most important is drink plenty of liquids a day or so before and that day and the day after (I only get IVIG every 28 or 30 days for 1 day, 60 GMs). I don’t usually drink much fluid that is why I am reinforcing this. I feel better if I do. Sometimes I am very tried after. My advice is don’t plan to do much after but hang around the house. I used to plan thing then get very frusrated that I could not or didn’t feel very good doing them. I usually just feel fuzzy headed and have headaches on and off that day and the following one or two days. Not a big deal. Worse feeling was like I had the flu for about 12 hours headache and achy feeling.

Good luck.

Pam K

keep in mind IVIG clinical trials showed that Ig levels spiked post treatment at over 10 times normal for about 48 hours and then tapered slowly back to normal in around a 28 day cycle. therefore, IVIG at about every 3 to 4 weeks seems to be the norm for most folk with aggressive CIDP. then there are those of us who have to buck the system and get the infusions as often as twice/week. the schedule that works best for each individual has to be discovered by the neurologist doing the treatment and everyone is different. There are some out there on less frequent dosages than 3 to 4 weeks stretching it out to several months so there is a wide variation. 🙂