? immunoglobulin ?
AnonymousJanuary 16, 2007 at 10:45 am
My daughter (now 14) was diagnosed with GBS about a year ago. She had a mild case because she never lost the ability to walk (although it is not pretty). It seems that she has plateaued and we are going for a neuro follow up. He is talking about a course of IVig and it concerns me a bit. I am looking for information about + vs – of the treatment. Should I be concerned about multiple donors of human blood products? Are there bad side effects? I know it is expensive (we don’t have insurance) but if it will help my daughter, the cost is not the greatest concern. Thanks for any help.
AnonymousJanuary 16, 2007 at 11:03 am
I can tell you how it went with me. First, yes it is very expensive, at least it was in my case. The treatment is based on body weight and I am a big, big boy. The first treatment was administered very slowly, very carefully in ICU with a nurse checking and taking my vitals frequently. Some folks respond badly having reactions to the various elements of the IVIG. SOme folks get fevers, chills, rashes. Depends on your body. In my case it went well. The next bottle went down a lot quicker, the remaining 3 bottles took less than 2 hrs. and I (luckily) almost immediately started to respond. 2 weeks later I walked out of the hospital. Of course as soon as I walked through the door, the wind blew me backwards about 10 feet until I backed into a building. It seems I overrated my strength as I did continually throough my recovery. My 7th anniversary is May 25 this year. I hope this works for your daughter. Best of Luck.
AnonymousJanuary 16, 2007 at 11:51 am
I could be mistaken but I thought I read on here that IVIG was given initially to halt the destruction being done by the GBS at the start of the illness. So is it also given later on and how would that help unless the patient is having a second case of GBS?
AnonymousJanuary 16, 2007 at 11:52 am
Hello and welcome. I have been receiving IVIG for a long time (20+ years) and have no concerns about it’s safety. Sure there are always risks involved but there are with any treatment. In my case the benefit has always outweighed the risks. Since you guys do not have insurance, check out [COLOR=Blue]needymeds.com/ (cut and past into browser)[COLOR=Black], there are links to many programs for assistance wih getting the IVIG or any prescription for that matter, for free or a reduced cost. Message me if I can be of any help, I also was uninsured and had to seek out help in the beginning, you can email me if needed [COLOR=Blue]jerimyschilz at hotmail.com[/COLOR][/COLOR][/COLOR]
[quote=69roadrunner]My daughter (now 14) was diagnosed with GBS about a year ago. She had a mild case because she never lost the ability to walk (although it is not pretty). It seems that she has plateaued and we are going for a neuro follow up. He is talking about a course of IVig and it concerns me a bit. I am looking for information about + vs – of the treatment. Should I be concerned about multiple donors of human blood products? Are there bad side effects? I know it is expensive (we don’t have insurance) but if it will help my daughter, the cost is not the greatest concern. Thanks for any help.[/quote]
AnonymousJanuary 16, 2007 at 1:23 pm
hi 69rr & welcome,
if your daughter is not showing any decline [i.e. her overall recovery is up disregarding the minor down swings], then ivig is not likely going to help. it is not a cure, it merely MAY stop the further production of the bad gbs antibodies being produced by her immune system. the amount is 2g/kilo of total body weight at a drip rate of 100 ml/hr. pre med w 2 benedryls & 2 tylenols. it is expensive, but quite safe. but remember there is some risk in any medical procedure. time is the real healer of gbs. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousJanuary 16, 2007 at 4:57 pm
I have coppied an article from a recent Communicator News Letter. Note that I have put the parts of the article that will be helpful to you in BOLD. Special note to the 2nd last paragraph with the BOLD sentances. I hope this helps in some way.
[FONT=Arial][SIZE=5][FONT=Arial][SIZE=5]What’s In a Name? Important Differences[/SIZE][/FONT][FONT=Arial][SIZE=5]
Between GBS, CIDP and Related Disorders[/SIZE][/FONT]
[I]David S. Saperstein, M.D., Phoenix Neurological Associates, Phoenix, AZ[/I][/SIZE]
[FONT=arial][SIZE=2]This article will discuss the differences between Guillain Barre Syndrome (GBS) and related conditions. Recently I have seen cases where misunderstanding of these concepts led to less than ideal management. I have also frequently observed confusion about terminology among patients and physicians.
[/SIZE][/FONT][FONT=arial][SIZE=2][B]GBS may also be referred to as acute inflammatory demyelinating polyneuropathy (AIDP). This emphasizes the acute nature of this disorder: symptoms come on abruptly and progress rather quickly. Symptoms stop progressing, often within 2 weeks, and usually not more than 4 weeks. After a period of weeks to months, patients then begin to experience improvement. Although the majority of patients with GBS will do rather well, not all patients will recover fully and may experience chronic weakness, numbness, fatigue or pain. Once symptoms stabilize, there is rarely any further deterioration. [/B]
[/SIZE][/FONT][FONT=arial][SIZE=2]Chronic inflammatory demyelinating polyneuropathy (CIDP) produces manifestations similar to GBS, but there are important differences. Symptoms tend to come on more slowly and progress for a longer period of time. Patients may stabilize and recover, but then experience a return of symptoms in the future (this is referred to as the relapsing form of CIDP). Alternatively, patients may experience progressive CIDP wherein there is slow, continuous progression without a period of stabilization. By definition, if there is progression of symptoms beyond 8 weeks, the patient has CIDP. Patients with CIDP often need sustained treatment, but many experience complete remission or at least improve and stabilize on medication.
[/SIZE][/FONT][FONT=arial][SIZE=2]A less well-appreciated disorder is subacute demyelinating polyneuropathy (SIDP). SIDP is defined by a progression of symptoms for more than 4 weeks but less than 8 weeks. In other words, the time frame falls in between that of GBS and CIDP. This is an uncommon but interesting group of patients. It is necessary to identify these patients because there can be important considerations regarding their treatment (see below).
[/SIZE][/FONT][FONT=arial][SIZE=2]The most important reasons for distinguishing between GBS, SIDP and CIDP are to help anticipate outcome and to determine the optimal therapy[B]. Patients with GBS are usually treated with a course of either of two therapies: intravenous immunoglobulin (IVIg) or plasma exchange (PE). IVIg and PE are equally effective (and there is not an advantage to using both treatments). Typically, a single course of treatment is given, usually as soon as possible after diagnosis. The goal of treatment is to hasten improvement. Patients with GBS will improve without treatment; IVIg or PE just accelerate recovery. As discussed above, the full extent of recovery will not occur for many months (or even years). This is an important point that is often not appreciated. Some GBS patients certainly do improve quickly and dramatically after being treated with IVIg or PE. However, most do not. Therefore, repeat courses of IVIg or PE or treatment with a different therapy are typically not indicated. [/B]
[/SIZE][/FONT][FONT=arial][SIZE=2][B]A number of GBS patients will have permanent symptoms. These symptoms are from nerve damage. IVIg and PE treat inflammation of the nerve, but do not help with nerve recovery. Nerve recovery can occur, but takes time. Persistent symptoms do not mean a person has CIDP. CIDP is diagnosed when there is continued [I]progression[/I] of symptoms (not continued [I]persistence[/I] of symptoms). [/B]
[/SIZE][/FONT][FONT=arial][SIZE=2]In contrast to GBS, CIDP patients are treated with repeated courses of IVIg or PE (or daily doses of other medications such as prednisone, azathioprine, cyclosporine or mycophenolate mofetil). Without sustained treatment, patients with CIDP will usually relapse and continue to worsen. Over time, the amount of medication can be decreased in many patients and, in some patients, treatment can be discontinued entirely.
[/SIZE][/FONT][FONT=arial][SIZE=2]Finally, we come to SIDP. Treatment is usually as for GBS: a single course of IVIg or PE. This will be sufficient for many of these patients. However, some SIDP patients are actually CIDP patients who got treated before they could declare themselves by progressing for 8 or more weeks. If they are not watched closely, patients with SIDP can quickly deteriorate. These patients will need more sustained treatment, as in the case for CIDP.
[/SIZE][/FONT][FONT=arial][SIZE=2]Now that I have defined the syndromes, I would like to give some examples of how incomplete appreciation of these disorders can lead to misunderstandings regarding therapy. I have seen several patients with SIDP diagnosed with GBS and treated with a single course of IVIg or PE. That is appropriate, but then when these patients subsequently worsened after a few weeks or months, they were either not re-treated or they were repeatedly treated with just a single course of therapy. They would improve and then worsen again and again. In such cases, continued treatment is needed to stabilize these patients (such as IVIg administered every month). [B]A different error is to give a GBS patient IVIg or PE to treat chronic, stable, persistent symptoms. These treatments will not help. Recall that the persistent symptoms are due to damaged nerves. At the current time, we do not have therapies to restore the damaged nerves (but there are medications that can be used to help nerve pain). [/B]
[/SIZE][/FONT][FONT=arial][SIZE=2]Hopefully this review has helped clarify the distinctions between GBS, SIDP and CIDP and illustrate the differing outcomes and treatment approaches for these disorders. [/SIZE][/FONT][SIZE=2]
Article from the Summer 2006 GBS Newsletter[/SIZE]
AnonymousJanuary 16, 2007 at 5:27 pm
Wow! What a great response. To answer a few questions posed –
MARI, My understanding is that plasma phoresis is indicated as an initial treatment but not later? IVig can be administered at any point in the course.
SHAKY, did you only have the one course?
JERIMY, 20+ years of use makes me feel a bit better about it. Thanks for the link info.
CARA922, my daughter still has some residual muscle weakness in her feet and ankles and a few autonomic symptoms (mostly related to temperature regulation in her legs and feet). Yes, I guess you could say that my daughter is in PT. My wife and I are both PTs. She however is a dedicated home schooling mom who has put her career on hold. But, you know what kind of shoes the cobbler’s children wear.
GENE, thanks for the tech info.
Thanks everyone. I think I will see if my girl wants to sign up and post to the teen forum. It may help her to talk with others going through this thing too.
AnonymousJanuary 16, 2007 at 8:00 pm
It is my understanding that Plasmapharesis and IVIg are both given initallly during the attack, and neither are given later. If IVIg can be given at any point, I am under the impression from past discussions, that Plasmaph. can be given as well.
I am very concerned that your doctor wants to do IVIg when your daughter has some residual muscle weakness in her feet and ankles and a few autonomic symptoms. This is not at all uncommon with GBS, in fact, many of our forum members are still not walking at this point, many do not have feeling in their limbs etc, and 20 years on many of us, including myself, still have autonomic symtoms. GBS is not progressing and the damage has been done. IVIg will therefore not stop the progression as in CIDP, so I guess my question is why he would want to do an invasive procedure like this?
AnonymousJanuary 17, 2007 at 10:26 am
Roadrunner – Yes I only had IVIG once. I was extremely lucky. My next door neighbors were both Emergency room physicians. They did a quick neuro exam
and told me if I was in the ER thay would refer me to Nuerologoy. I used them as a reference and got into the Neurology clinic (at a teaching hospital)two days later. By then I was shutting down fast. Couldn’t walk, could hardly use my arms, legs and hands completely numb, trouble breathing. You all know the symptoms. They admitted me directly from the Nuero clinic and in fact the Dr. called the hospital pharmacy to pre-order the IVIG. Started IVIG the next day. I can honestly say I felt better after the first bottle. As I said, I walked out of the hospital. Was out of work 4 months, really, really weak. Still have reduced endurance. But considering how many other folks fare, I am incredibly lucky. I only mentioned the bad reactions because the nurses warned me to be prepared. I had no problems.
I do have a concern (like others) to the timing of your daughters treatment only because you never know how much Drs. have been exposed to GBS. I have heard horror stories of mis-diagnoses which is why I went to a mojor teaching hospital.
AnonymousJanuary 18, 2007 at 9:59 am
Thanks to all. After talking with the neuro, he said he would not even consider treatment unless her sx were worsening (indicating CIDP?). He also said that the treatment was not curative. Good communication is not just important, it’s essential! Our f/u appointment is next Wed. He is planning a NCV to compare with last year. I like him because the first thing he does is a good hands-on clinical exam before he starts ordering tests. Even then, he tells us what he is looking for and why.
AnonymousJanuary 25, 2007 at 4:19 pm
My daughter went for a 1 year follow up with the neuro. He did NCV testing and a clinical exam. Her upper extremities seem to be normal. There has been no significant change in the lowers except a small improvement in the sural nerve. He thinking that since she is stable he wants to do nothing except have us continue to work on strengthening and flexibility. He wants to see her in a year unless we notice a functional decline. Thanks for all of your comments and emails!:)
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