Speed of IVIg Improvements

I saw major improvement within a week of the first infusion (which was about 2 months ago). For follow-up treatments, I see a difference within a couple of days.

Unfortunately I’ve gotten a bit worse since, but am still far above the level I was at before IVIG.

Lauren,
I started with 1g/kg 2 days in April and saw results. Not like I had hoped. I think I thought I would skip or run out of the Infusion Center. That did not happen. But about three days after the initial load, I had increased energy and started making progress with improved muscle strength. I had only 1g/kg 1 day for each of the next two months. I maintained but did not improve. So, I was changed back to 1g/kg 2 days for the next three months. I am improving at a slow rate. I will notice that I can do something that I could not do several weeks before. But, I do not see daily or even weekly improvement. I too wonder what to expect. I read somewhere that what improvement you accomplish within 18 months is usually the extent of the recovery. I am suppose to meet with the doctor next week when I have my Infusion. I am hoping to get some answers at that time. Like I said, I am improving but it is so slow. I have had treatments for six months and I would say I am about 75% better. I am quite functional now, so the thought of 18 months is not as overwhelming as it seemed two or three months ago–just as long as there continues to be improvement!!

Kristin,
Doctors and discussions can sometimes be a battle, but if possible can you insist on 2g/kg. If you did see some improvement on 1g, 2g would amaze you. Kevin could not walk, hold a pencil, urination and bowels were an issue and breathing started to be an issue after the first day of his 5 day course, he was running down the halls, doing push-ups, doing stairs, it was amazing. maybe you could argue that it could not hurt if you did it for a few months, and if it helped, it could be the difference of the rest of your life. good luck in trying to convince the doc, we will pray that he listens.
Dawn Kevies mom

There are several factors here Kristin, first you have to stop the attack, then your nerves can grow back. 1g/kg may not be enough to overcome your immune system so I agree with Dawn that you should try to go for 2g/kg. As for how long it takes – it’s very individual, we’re like snowflakes – all alike, yet all different. You may feel improvement pretty quickly, like Kevin, when your immune system is dampened down (or whatever IVIg does) and your nerves are no longer inflammed or it may take a little longer for you to notice anything. The first time I had IVIg it took 5 days at 2g/kg before I stopped going downhill, then another four days at that dose until I could move my face again. My neuro at that time was quite aggressive. Ten days after my mega dose of IVIg (9 days at 2g/kg) I was finally able to move bits and pieces of the rest of my body. I continued to improve for a couple more weeks but unfortunately I did not get IVIg again for an entire year and by then I had gone up and down so much the improvements were more subtle. Depending on how many treatments you get in those four months you could show quite a bit of improvement – but it does depend on a lot of things, including what variable of CIDP you have. Just for the record I currently get 1.5g/kg for three days every three weeks and it keeps me on an even keel – if I try to go four weeks or lower the dose – I start to relapse again and lose progress. Its a tricky thing to get the IVIg dosage and timing right and it is exceedingly helpful to have a doctor and nursing staff who are knowledgable and if not at least willing to listen and learn. If they are putting up those “you don’t know what you are talking about” blinders then print some of the stuff from the forum to take to them. There are many threads on the various brands, doses, timing, side effects etc. of IVIg that can help broaden their perspective. Good luck, Julie

P.S. I can well remember after being on IVIg for several months I could finally hold my coffee cup with one hand again, it had been two years since I could do that. Something will happen and you will suddenly realize “I’m getting better” and nothing will upset you that day you’ll be so happy. Just remember nerves grow slowly and some people do not respond to IVIg, never give up though, keep fighting!!!

I agree that you are not receiving enough IVIG. If you are only receiving it for a 4 month trial period then they need to use the IVIG the correct way. In not doing so they are setting you up for failure before you even start.

I would recommend Googling info on IVIG & taking it to your dr. Let him/her know that you want more – you want protocol. You wouldn’t be asking for anything out the ordinary – you would be asking for what almost every other person gets.

Emily was 4 at the time of diagnosis & she could not walk, run, jump, open her hands, lift her arms or even feed herself. 2 days after her first treatment of 2 grams per kg she was running down the hallways at the hospital & jumping around.

For some people they see a pretty quick response. For others it may take longer. It’s a fantastic sign that you are seeing some improvement but can you even begin to imagine how much more improvement you might be able to make if you were getting the correct dose? Right there alone should be enough motivation to kick your dr’s butt into gear!

How many grams did you receive per day?

Good luck!
Kelly

I’m sorry but what the nurse told you was false. Many people here have been to the Mayo & they receive the standard protocol.

Let’s do the math…

118/2.2 = 53.63

53.63 x 2 = 107.26

107.26/5 = 21.452

You should be receiving between 20 & 25 grams during each infusion for 5 consecutive days. Then you would need to find the appropriate maintenance dose.

What state do you live in?

I’ve never heard of a state governing IVIG the way yours does. I would assume they would be required to use proper protocol to determine if someone really needs IVIG. If you aren’t getting enough of the med then the attack isn’t being stopped & if the if attack isn’t being stopped you won’t get better. My daughter’s nurse has a new pediatric patient whose family moved from Missouri to Michigan because it’s easier to get IVIG. From the little I know IVIG was more scarce there whereas in MI (luckily) it’s still readily available as long as your dr feels you need it.

It absolutely infuriates me when this kind of thing happens. Sometimes the system just sucks! How do they expect people to get better if they aren’t using the medicine properly? They wouldn’t give an asthmatic 1/4 of an inhaler to see if it works…why do this to someone with possible CIDP? It’s crazy!

Sorry for the small rant. I just feel so bad for people who are put into your situation.

Kelly

My doctor explained that my response to IVIG became part of the diagnosis. I elected up front not to take Prednisone. I have seen too many long term side effects in people taking Prednisone for other illness.

My insurance is UNH. It took a month with me calling every other day following up to get approval for my initial IVIG. I should say trying to follow up. I would be forwarded all over the place. I was so concerned because I had read that recovery depended on how quickly you started treatment and I was getting progressively weaker. Since I was initially approved I am not sure of the correspondance between my doctor and UNH. I received a letter last week that said I was approved to continue treatment, but the letter went on to say that the approval did not guarantee payment. That is not exactly comforting since the treatments are $17,+++ each if I as the patient have to pay. But, I know I have made progress and assume UNH will pay. (UNH’s letters are so ambiguous).

One of the things I want to talk with the doctor about next week is maybe increasing my dosage. From what I am understanding from reading on this forum, higher dosage seems to have the faster results. My improvement has been at the loading dosage. I did not improve, but stayed the same on the maintenance dosage I received on months two and three. But it seems that I could possibly still increase my dosage from what I received on months four-six.

I realize I, like you, am at the beginning with this whole process and I have learned more about it from this forum than anywhere else. I am thankful that everyone will share their knowledge and experiences. I am not sure if what I have said here helps at all or just confuses the issue. But again I think my progress is justifying the treatment.

[QUOTE=Julie]There are several factors here Kristin, first you have to stop the attack, then your nerves can grow back. 1g/kg may not be enough to overcome your immune system so I agree with Dawn that you should try to go for 2g/kg. As for how long it takes – it’s very individual, we’re like snowflakes – all alike, yet all different. You may feel improvement pretty quickly, like Kevin, when your immune system is dampened down (or whatever IVIg does) and your nerves are no longer inflammed or it may take a little longer for you to notice anything. The first time I had IVIg it took 5 days at 2g/kg before I stopped going downhill, then another four days at that dose until I could move my face again. My neuro at that time was quite aggressive. Ten days after my mega dose of IVIg (9 days at 2g/kg) I was finally able to move bits and pieces of the rest of my body. I continued to improve for a couple more weeks but unfortunately I did not get IVIg again for an entire year and by then I had gone up and down so much the improvements were more subtle. Depending on how many treatments you get in those four months you could show quite a bit of improvement – but it does depend on a lot of things, including what variable of CIDP you have. Just for the record I currently get 1.5g/kg for three days every three weeks and it keeps me on an even keel – if I try to go four weeks or lower the dose – I start to relapse again and lose progress. Its a tricky thing to get the IVIg dosage and timing right and it is exceedingly helpful to have a doctor and nursing staff who are knowledgable and if not at least willing to listen and learn. If they are putting up those “you don’t know what you are talking about” blinders then print some of the stuff from the forum to take to them. There are many threads on the various brands, doses, timing, side effects etc. of IVIg that can help broaden their perspective. Good luck, Julie

P.S. I can well remember after being on IVIg for several months I could finally hold my coffee cup with one hand again, it had been two years since I could do that. Something will happen and you will suddenly realize “I’m getting better” and nothing will upset you that day you’ll be so happy. Just remember nerves grow slowly and some people do not respond to IVIg, never give up though, keep fighting!!![/QUOTE]

Julie, are you getting 1.5 gm/kg each day for three consecutive days? That would be 4.5 gm/kg every three weeks.

These darn insurance companies! I swear they make me mad! Here you are needing this medication and all they want to do is get proof! I would send them pictures of me being sick and me trying my best to walk having major problems. That is what I would do! As much as I hate to say it but I sure hope we get healthcare for all with no denials of any kind of treatments. I know somebody right now having problems getting treatment for cancer. Because they don’t have health insurance, the hospital refuses to give them treatment unless they pay first. I sure hope that you get lucky here and can get those treatments. Will be saying a prayer for you and hope that it gets answered. Hugs

Hi Kristin,

I am glad to see that you have made some important headway with obtaining the IVIG treatments as compared to where you were at months ago on this.

I don’t understand about the steroid part because many people don’t respond to steroids so the Dr. moves on to the IVIG or Plasma exchange. They can’t just attribute it to your timed recovery you normally experience because you into’d a variable.

So the IVIG dosage is what like half of standard right? I like the inhaler analogy. Are there any other drugs you can add to the IVIG instead of the Pred that doesn’t work? Sounds like you just need that one more convincing piece of proof to get a more firm diagnosis.

Keep getting EMGs as often as Insurance will allow. Especially when the season time frame kicks in, you may catch activity at that time and sew it up.
As with many, the struggle we face to get a diagnosis stinks. Keep pushing!
All the Best to You!

Hi Tim! I think alot of it has to do with insurance too about treatments. Some people can take the prednisone and it will help them and others won’t respond so they take the next step. Insurance companies have alot of say so in the matters of treatment. Which I think is bad! The doctors have their hands tied too with these insurance companies keeping many from doing what they would like to do in the first place!

[QUOTE=Rod in Louisiana]Julie, are you getting 1.5 gm/kg each day for three consecutive days? That would be 4.5 gm/kg every three weeks.[/QUOTE]

I get a total of 40g/day for 3 days every 3 weeks, my rate is 25mL/hour for 1 hour; 50mL/hour for 1 hour; and 100mL/hour for the remaining time. So far so good. 🙂

Kristin, I would think dr’s documentation of your improvement with the ivig would justify it to the insurance co. I have just seen a neuromuscular neurologist for a second opinion, and he has justified a need to increase my ivig-felt my other neuro wasn’t giving me enough, and my insurance co. has approved. Dr. and I are hoping my strength and balance improve. I got 45 gm./day for 4 days for a loading dose last week and now am getting 45gm./day for 2 days every week. I am scheduled for a port insertion Nov. 25, so I will get 3 weeks of ivig before then, and I also see my physician the same day as the port, and I am so hoping that this dosing schedule helps. In 8 years, I can’t imagine what it would be like to feel better again. Really better………all the best to you. Hope you get the ivig issues all straightened ot Kristin

Julie-good to see you on here again. I have missed you.
Emma

Dear Kristen,

You must test positive for somethings such as High Protein level in Blood and Spinal Fluid before they can make a diagnosis.
I just had an EMG done recently. My neurologist did my FULL body and is now able to prove to the insuance co that I have nerve conduction blocks. If they do not do more than just your extremities they may not be able to see the full picture.

Best Regards,
Lori