Sword of Damacles

[Vincent]

Just got back from my neurologist. Been on the treadmill for 18 months. I've had every test you can name (except lumbar puncture, no one mentioned it so I didn't either) and still nothing definitive. I am classed possible ALS. I'm on riluzole and baclofen. Still wearing an AFO. Hand strength is going, breathing has changed.at night. So it's off for sleep study and IVIG. Any info on IVIG is appreciated. I know this is all part of the diagnosis process but the sword of Damacles is getting tiresome.......
Vincent

 

[hn7609]

Not too much that I can tell you about it except that it's insanely expensive. During my diagnosis period my Dr. set me up for a quart a day for 5 consecutive days then one a month for 3 months after. Unfortunately in my case the treatments had no effect. If you are suffering from something other than ALS the IVIG can be a miracle worker. I wish you luck with it.

 

[zoohouse]

My husband had IVIG in the first 6 months of his treatment by my request as he has a positive AntiGm1 antibody which could indicate MMN (multifocal Motor Neuropathy) which mimics ALS. The neurologist was not keen on doing it, said he was 100% sure that it wouldn't work, but I insisted, as he had diminished reflexes rather than hyper reflexia, and the neurologist couldn't produce any signs of upper neurone disfunction.
IVIG is a blood product, made by pooling immunoglobulin from hundreds of donors, which stops the body from attacking itself, in some neurological cases. At the time of his first infusion he had wide spread fasciculations, severe right foot drop, weakness, dizziness, and some numbness on the outer aspect of his right leg. One of the side effects can be headaches, increased B/P and allergic reaction, so I made him drink a litre of fluid before the treatment and he was given tylenol and Benadryl when it was started. His fasciculations went away that night, the foot drop improved dramatically, and the numbness totally went away with in days. We were elated, and the neurologist was surprised. We continues with the treatments, but the improvements lessened with each time, and after 6 months we stopped as there was no change at all. I brought him to our ALS clinic here in Canada and they said that while uncommon some ALS patients to get some improvement with IVIG, so I say give it a try if you have insurance and can afford it.

Paulette

 

[MaxEidswick]

>while uncommon some ALS patients to get some improvement with IVIG, so I say give it a try if you have insurance and can afford it

Me, too Paulette? I am going to email our clinic and ask ...

 

[MaxEidswick]

>VA nor insurance will cover IVIG for ALS. It is considered experimental in ALS and is very expensive.
>$10K-$30K per treatment.

are they kidding? IVIG info from my clinic:

I cannot say since there have not been clinical trials for IVIG in ALS. The cost is anywhere from $10K-$30K per treatment.

Karen

From: Eidswick, Max [mailto:[email protected]]
Sent: Wednesday, April 09, 2014 9:17 AM
To: Karen
Cc: [email protected]
Subject: RE: IVIG treatments?


> IVIG for ALS. It is considered experimental in ALS and is very expensive

Worth it?




Max L. Eidswick
970.691.4640
[email protected]
skype: max.eidswick
CCM07 M74 C105

Sent: Wednesday, April 09, 2014 9:14 AM
To: Eidswick, Max
Subject: RE: IVIG treatments?

VA nor insurance will cover IVIG for ALS. It is considered experimental in ALS and is very expensive.

Karen

From: Eidswick, Max [mailto:[email protected]]
Sent: Tuesday, April 08, 2014 1:55 PM
To: Karen
Cc: [email protected]
Subject: IVIG treatments?

Hi, Karen --- Have you heard of IVIG treatments – I just read about them on an ALS forum suggesting they can be helpful if our insurance or the VA covers them.

What do you think?






Max L. Eidswick
970.691.4640
[email protected]
[email protected]
skype: max.eidswick



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[Atsugi]

Seven consecutive patients with amyotrophic lateral sclerosis (ALS) were treated with intravenous immunoglobulins (IVIg; 0.4 g/kg per day for 5 consecutive days followed by monthly 2-day infusions at the same daily dosage) continued with oral cyclophosphamide (1-2 mg/kg per day), for 4-13 months (mean 8.1). Response to treatment was assessed by means of the Medical Research Council (MRC) rating scale for muscle strength on 40 muscles (10 per limb), a clinical scale for bulbar function and a modified Rankin disability scale. All patients continued to deteriorate during treatment on as regards both their MRC score and either their bulbar or Rankin score or both. The progression of the disease during treatment, expressed as the monthly variation in MRC score (mean = -2.71; SD = 1.36), was no slower than that estimated before therapy (mean = -1.81; SD = 0.93). Even if the results of this small, uncontrolled study do not permit the exclusion of an effect of IVIg on the progression of ALS, they also do not provide any evidence that this expensive form of therapy consistently slows the course of the disease.

 

[MaxEidswick]

>Seven consecutive patients with amyotrophic lateral sclerosis (ALS) were treated with intravenous immunoglobulins ... they also do not provide any evidence that this expensive form of therapy consistently slows the course of the disease.

In summary, no luck with this one, right Mike?

 

[Atsugi]

I'm not a doctor, but I say this with confidence:
IVIG is intended to boost the immune system and doesn't have a chance at rebuilding muscles that have been de-enervated.
It would be nice, however, if someone could prove me wrong.

 

[Atsugi]

I'm not a doctor, but I say this with confidence:
IVIG is intended to boost the immune system and doesn't have a chance at rebuilding muscles that have been de-enervated.
It would be nice, however, if someone could prove me wrong.

 

[MaxEidswick]

>It would be nice, however, if someone could prove me wrong

yup, but not likely ... thanks, Mike!

 

[zoohouse]

Max, my husband has an Atypical ALS, primarily LMD, and a positive AntiGM1. We did not know that his relatively brief military career made him eligible for coverage, so was going through his blue cross insurance. The neurologist did have to fudge a bit and say that it was ?CBIC? or something like that.(too tired to do the research to get it right) and wanted a trial of IVIG. I was pretty insistent, and I know that specialists hate when nurses are involved with their patients. Because he had such a good response we continued, and we had a letter from the ALS clinic in Vancouver, stating that they would recommend continuing. When we got involved with the VA, we gave the neurologist all of our paper work and letters, and he ordered it. We had to drive to the Seattle VA for each treatment a 7 hour drive, as we hadn't been able to get his insurance to cover it in Canada. By the time we finally got it set up for Canada he had one more treatment, and we decided to stop as it wasn't helping anymore. Maybe it was a placebo effect, who knows. Tim progressed quickly but we are very thankful for the benefits of both the VA medical, and Canadian health care that we are able to access.

Paulette

 

[MaxEidswick]

Thanks, Paulette -- I think I'll ask our VA just in case. "Don't ask, don't get" .

Mike, do you think there is any harm in trying? Subjective, not medical opinion ...

 

[Atsugi]

Thanks, Paulette -- I think I'll ask our VA just in case. "Don't ask, don't get" .

Mike, do you think there is any harm in trying? Subjective, not medical opinion ...

I'm glad you asked. There are more opinions--even inside me--than a simple yes or no.

For one thing, I think it's very important for a PALS to be relaxed and at peace with themselves throughout the duration. If an alternative treatment brings calm--perhaps gives the PALS a sense of accomplishment--then I'm all for it.

For the group, however, I think it's a shame to allow false hope to build up and cause others to chase alternative "therapies" they can't afford. PALS are sometimes understandably anxious and more than willing to try anything at all, regardless of the science.

If someone can produce a study with hopeful results, I'd say go for it. Otherwise, I say try to relax. Try to put your energy, money and time remaining into something productive, satisfying, entertaining or calming.

 

[zoohouse]

Atsugi, I absolutely agree. I gave a reply on IVIG because we did a trial, and hopefully communicated that Tim's ALS is atypical, with some different markers that could indicate MMN which IS treated with IVIG. When we went to GF Strong in Vancouver, we say a neurologist who did major research on MMN vs. ALS and she did explain why she was very sure that Tim had ALS. It made sense at the time, couldn't tell you now what she said, but she did say that she has had a few PALS that have SOME benefits from IVIG. In Canada it is covered by our medical system, with a prescription from a neurologist and haematologist. I also mentioned that the benefits only lasted around 7 months, so we stopped, as I do not believe in draining the medical system in a vain hope that it might start working again. Also mentioned that my husbands progress is fairly rapid, so it certainly didn't slow it down that we know of. IVIG is a blood product which means it comes with all the possible risks of receiving blood. So, what I am trying to say is that I tried to present what I knew about it, and let others decide whether they wanted to bring it up with their neurologist. What I also suggest is that anyone that is interested in whether they should ask is to look up MMN which mimics ALS, and is treated by IVIG. I know that there are many who do not have the resources that we do and it hurts me deeply.

Paulette

 

[MaxEidswick]

>If someone can produce a study with hopeful results, I'd say go for it. Otherwise, I say try to relax. Try to put your energy, money and time remaining into something productive, satisfying, entertaining or calming

Thanks for the feedback Mike. Well said as always.

After some additional being, I'm going to pass on this one to (even if the VA would cover it).

I think I finally just past the screen for the Fingolimod trial, so I'll just stick with that. I die 50-50 all get stuck with the placebo anyway …

Thanks, Max