IVIG plus PE

Hi Fred,
Kevin weighs 121 now and is getting 90 grams, was getting 100 grams every four weeks, we are now after 11 months tapering down by 10 grams every three months. He has been getting loading doses the whole time. Even if you were to get 20g a week, that would not be a loading dose. not even a maint. dose. Your full loading dose should be 197g, rounded up 200, down, 195. Half of that would be a maint. dose, so 97.5 or 100 g would be a maint. dose. If he initially did the pp and followed w/ivig loading doses, he might be able to keep you stable w/20g EVERY week, but even that is short of a full maint dose. It is not even worth your trouble to do 20g every 4 weeks, it would kind of be like putting a 1/16 of a gallon of gas in an empty fuel tank. It would not even be enough to get to the engine. I do think that it is awesome that he is willing to do pp and follow w/ ivig, he just has to increse the amount and frequency of the ivig. Your symptoms prove that. Good luck to you, I know you will figure this out and get the help you need.
Dawn Kevies mom

Just to give you some perspective…

Emily is now 55 lbs & gets 20 grams of IVIG every 3 weeks. We figured that dose to be .5 grams per kg.

A normal loading dose is 2 grams per kg & a maintenance dose is usually 1 gram per kg.

You aren’t getting ANYWHERE near what you should be getting.

I would suggest doing some research on IVIG dosing, printing it out & then taking it to your dr. Even if you go to the Gammaguard website I think they have the correct dosages there.

Either that or find a new neurologist who is more familiar with CIDP & IVIG. The fact that he’s willing to do PE shows that he at least knows something about the disease & treatment options though. He might just need some more education from you to be up to date.

I have to disagree with him on the IVIG not working for you though. IVIG’s efficacy depends on the individual, the dose & the brand. You may not have received the correct dose, the correct band or both when you received it before. Some brands work better for different people – you have to keep searching until you find the brand that is right for you. Same for the dosing schedule – some people need more IVIG more often & others can go a month between treatments on a lower dose. I’ve read many times that treating CIDP is an artform.

Good luck,
Kelly

The other thing to consider, is won’t the PE remove any of the IVIG that was left over in your system? I know the first time I was diagnosed they did IVIG for 5 days and then 3 weeks later when I was admitted they did PE for 5 days. I remember someone commenting that the PE was just going to remove all of the previous IVIG. Just a thought

Keep Smiling!

marjie

As long as the pp is done first, then ivig. If he were to continue pp shortly after the ivig, yes you are right it would wash it out. My inexperienced mom thought is for those who do not get results from ivig quickly, why not help the ivig out by first cleansing as many auto antibodies as possible w/ pp and the do the ivig so the new antibodies from the ivig do not have such a challenging job working out the auto antibodies, the pp has already started. Just mom thinking.
Have a good day guys, hope you guys aren’t getting too rained out!!!
Dawn Kevies mom

Dawn – I’ll trust your mom logic any day! That makes sense, mine was just backwards.

I head to Rush tomorrow for another check up – keep your finger’s crossed!

keep smiling!

marjie

Good luck at the doc’s office, we go on Thursday.

Hello Fred,

Are you seeing a general neurologist or a specialist in neuromuscular disorders? For a specialist, you’d probably have to go to a university teaching hospital. Talk to your neurologist about a referral for a consultation. CIDP is uncommon enough that many neurologists have little experience with it.

Also, I second the above comments about IVIG dosages, and would like to add that, even at the 2mg/kg loading dose, not everybody responds right away.

Good luck,
GaryD

[QUOTE=Emily’s_mom]Just to give you some perspective…

Emily is now 55 lbs & gets 20 grams of IVIG every 3 weeks. We figured that dose to be .5 grams per kg.

A normal loading dose is 2 grams per kg & a maintenance dose is usually 1 gram per kg.

You aren’t getting ANYWHERE near what you should be getting.

I would suggest doing some research on IVIG dosing, printing it out & then taking it to your dr. Even if you go to the Gammaguard website I think they have the correct dosages there.

Either that or find a new neurologist who is more familiar with CIDP & IVIG. The fact that he’s willing to do PE shows that he at least knows something about the disease & treatment options though. He might just need some more education from you to be up to date.

I have to disagree with him on the IVIG not working for you though. IVIG’s efficacy depends on the individual, the dose & the brand. You may not have received the correct dose, the correct band or both when you received it before. Some brands work better for different people – you have to keep searching until you find the brand that is right for you. Same for the dosing schedule – some people need more IVIG more often & others can go a month between treatments on a lower dose. I’ve read many times that treating CIDP is an artform.

Good luck,
Kelly[/QUOTE]

Kelly, I had to laugh at your comment about CIDP treatment being an art form. It mirrors a conversation I had with my neurologist last week.

I was in Houston for two days that week, for my third booster at 62 grams per day (.6 gm/kg) on two consecutive days. My infusions are always administered as an outpatient at Methodist Hospital (Baylor College of Medicine), so Dr. Appel can see me each day and check on my progress.

During his second daily visit, I was telling him that the neuropathy in my feet had decreased significantly, less than 24 hours after my first day’s infusion. Of course, we were both elated that the IgG is producing some results, and that led into a discussion about how different treatments affect different people. Dr. Appel specializes in treatment of ALS, GBS, CIDP, MS, etc. He emphasized to me that we were still searching for the proper course of treatment for me and that this determination may take some time. He also stated that, although he will apply his experience and expertise in making recommendations, final decisions regarding the proper course of treatment are mine and mine alone because I’m the only one who knows exactly how I feel. As we all know, many physicians do not share that perspective.

Dr. Appel said that because IgG affects different people in different ways, he uses a conservative approach, which he defined as administering just enough of the medication in order to achieve the desired results. In my case, I’m allergic to penicillin, sulfas and aspirin. I’ve also had a reaction to the IgG the one time that the nurse failed to premedicate me with Solumedrol. Because of my wacky immune system, he doesn’t want to take the shotgun approach of giving me a maximum dose, then tapering off. He’s also conservative in the rate at which the IgG is infused. He starts out at 60 ml/hr for 30 minutes, then goes to 120 ml/hr for one hour, then moves up to 150 ml/hr for the rest of the infusion. Another consideration is that I’ll soon be 65 years of age. Children tolerate IgG well, but that tolerance declines significantly as we get older.

One very interesting part of the conversation was when he was telling me about the half-life of IgG. Half-life is the interval of time required for a quantity of a substance to decay to half of its initial value. Dr. Appel stated that the half-life of IgG is 10 to 14 days. From 10 to 14 days after the infusion, only one-half of the quantity of IgG initially administered will still be present. From 10 to 14 days after that, only one-half of one-half (or one-fourth) will still be present. At the end of the third half-life (30 to 42 days), only one-half of one-half of one-half (or one-eighth) will still be present. The number for which everyone is searching is the minimum quantity/minimum frequency of IgG administration that will arrest the damage-causing process and allow the myelin sheaths to rebuild themselves.

I consider myself very fortunate to have been referred to Dr. Appel. Aside from his experience and his acknowledged expertise in the treatment of NIDS, his concern for his patients and his inclusion of us in determining proper courses of treatments makes this journey much easier for all of us.

By the way, if my math is correct (and it’s not always so), Emily’s dose every three weeks is .8 gm/kg. Emily weighs 55 pounds, or 25 kilograms. Twenty (20) grams divided by 25 kilograms works out to .8 gm/kg.

I’ve been out of pocket for a while, due to hurricane evacuation and work-related issues. It’s good to get back and to catch up on what’s happening in the community.

Rod

Your dr. sounds fabulous. Wish we all could have the best! Glad things seem to be going okay for you. Have been worrried with Gustav blowing your way that you may not have got to Houston.

Take good care.

[QUOTE=jan’83]Rod

Your dr. sounds fabulous. Wish we all could have the best! Glad things seem to be going okay for you. Have been worrried with Gustav blowing your way that you may not have got to Houston.

Take good care.[/QUOTE]

Thanks for your concern, Janet. We evacuated to Austin, TX, which enabled us to be there for our daughter’s 25th birthday. That wouldn’t have happened without the evacuation. Our glass is half full. 🙂

Tomorrow morning, I leave for a week in Chicago, with the understanding that I may need to cut short my visit and catch an early flight home if Ike stays on its projected track. I know it’s very early, and that seven day projections of hurricane tracks are notoriously unreliable, but it is a huge source of concern to me. Stephanie said for me not to worry…..we could always hook up somewhere on the evacuation route. What a woman!!

Hi Rod! I hope Ike decides to fizzle out before it reaches anybody. I just hope none of us see another Katrina! So I will keep you all in that area in my prayers! Good luck on your trip! Hugs

Hi Rod, I travel all over with my job so I know how hard it can be to be away from family and loved ones when “disaster” is pending. Ike is only one of the problems they are reporting here in Canada. We are hearing there is a Josephine right behind Ike. Yikes! You guys are really getting hit. Gustav reached Canada yesterday and today but I am far, far away:D

At least sopme good came from the last blast. Hope you had a great visit with your daughter! I miss my kids and take advantage of every chance to visit.

Best to you and Stephanie. Travel safely.

Fred,
Where and who in Illinois? What state do you live in? Has your doc considered cell cept since you have had no luck with other things? There is a lady you can google, Jenn’s Story. She lives in Illinois, not far from myself, I have spoken with her, and she is very nice. She had a stem cell transplant for cidp at Northwestern. At the time, she was the only cidp patient to recieve the transplant. She is doing well to date.
Best Wishes
Dawn Kevies mom

Hi Fred and Rob! Rob, you doctor sounds fantastic. Wished I could see more like him in the field. Fred! I hope you start to get better soon on the new treatment plan and hope you recover soon. Nice meeting you in here and I wish you my best! Hugs

It sounds like your doc is very on top of things…thats great! I’m interested to hear what the other doc says about CO Q 10. Whether it would be a positive or a negative. hmmm….

keep smiling

marjie