POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: thinkertwo on April 20, 2009, 12:27:37 pm
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Hi, me again...My situation is so unusual I was wondering if anyone has ever heard of this...I'm the guy with Lower Motor Neuron disease probably related to HIV. I am pushing my neurologist (after a few years of declining motor reflexes and weakness) into doing something other than HAART. He suggests, as a long shot, that I can try IVIg treatment. He said there is a 1 in 1000 chance that it can help. I am on Travada, Reyetaz and Norvir.....NO ONE WILL BLESS any change (I am very med sensitive; it affects my neurological system, weaker, med related anxiety, shaking,bad fatigue...). Also top notch doc's at MA General and Beth Israel in Boston....
I was thinking of trying this once I am in a wheel chair; at this rate in a year or two. Anyone have any experience with this treatment, side effects or opinion on whether I should try it now. On the one hand I can still do some things and don't want to jeopardize that, on the other it's just a matter of time...Obviously looking for the best quality of life for the longest time possible...feeling a bit helpless...
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Thinker:
It sounds as if your doctor is being very proactive and willing to explore options where standard therapies simply do not exist.
IVIG, while not approved for any HIV-related neurological problems, has been tested in a small study as a treatment for HIV-associated myelopathy.
http://www.liebertonline.com/doi/abs/10.1089/apc.2008.0018
Research suggests that HIV-associated myelopathy -- similar to other motor neuron diseases -- is a result of inflammation and that the anti-inflammatory properties of IVIG may alleviate its symptoms. But as your neurologist suggests, there are no guarantees when it comes to IVIG, given that it really hasn't be tested extensively for inflammation-related neurological diseases in people living with HIV.
Side effects can occur, including headache, a stiff neck and sometimes fever during or soon after the infusion of IVIG. However, there's data suggesting that the risk of these side effects can be minimized with *slow* infusions of IVIG. Fatique is another common side effect, usually rising to the surface for the first day or two after the infusion.
A potential problem with IVIG is its cost. IVIG isn't cheap and many public and private insurance plans are reluctant to pay for it for HIV-associated myelopathy (or, again, other neurological problems), given that it's not approved for these diseases and hasn't been studied extensively. So be warned -- before you get IVIG, you and your doctor, along with any other professional advocate on your side (a case manager or social worker perhaps), may need to go toe-to-toe with your insurance plan administrators to secure access to treatment.
Best of luck to you...
Tim Horn
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Thanks Tim!
I looked into the study. The key seems to be neurological inflammation...I've been searching the web and my blood test results...I would be more inclined to give this a try if I can verify some kind of documented inflammation I may have. I'm not sure where to start. Do you know what I should be looking for in my blood tests, EMGs, spinals...If I have some kind of inflammation, then it would make sense for me to give it a try; I guess. Don't I sound so sure of myself ??? ??? ??? I'm so afraid to make a decision that I will regret. It seems like nothing has gone as planned.
Thanks for a point in some direction ;)
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Hi Thinker:
The problem is, it can be a tad-bit difficult to look for localized inflammation when it's unclear if inflammation is truly the root cause of thing like myelopathy and other forms of nerve degeneration. And while many neurologists suspect that inflammation is to blame, I don't think there's any agreement as to which "marker" in the blood, cerebrospinal fluid, or nerve/muscle biopsies is associated with the inflammation responsible for nerve damage.
It's distressing how little is known about the mechanisms begin various neurological diseases. And the fact that we have so few effective treatments for neurological problems -- everything from multiple sclerosis, to myelopathy, to peripheral neuropathy to Alzheimer's -- speaks to this.
Based on the *hypothesis* that many neurological diseases -- especially those seen in people with chronic infections like HIV -- are caused by some sort of underlying inflammation, treatment becomes a matter of trial and error. Given that IVIG has worked for some individuals in the past, and appeared to show some efficacy in at least one small clinical trial (without fully understand why IVIG might be effective, mind you), it remains an option in the real world -- even if it is "a long shot."
I guess what I'm trying to say is that you may be weighing the option of trying IVIG based on hope and your doc's personal hunch, not on tried and true science. And sometimes, this is what many are up against with battling a disease that's poorly understood.
Tim Horn
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Thanks again Tim...
You helped me put this into perspective. I think I will go with my original "gut" reaction and pass until things get worse. Given the side effects, cost and the way my body reacts to any medication, I don't want to chance losing quality time for something that is a long shot (1 in 1000 as my doc says). Maybe when my quality of life deteriorates I will be more apt to take some chances.......
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Thinker:
Fair enough... but, if I may play devil's advocate for a second, you may also want to consider the possibility that ongoing inflammation will cause further (permanent) nerve damage and that IVIG may be a way to at least halt progression of the disease. In other words, it's possible that at least trying IVIG now may yield more benefit than waiting. Unfortunately, we don't have nearly enough IVIG data to know whether or not this theory holds true.
I do think you should have another chat with your neurologist, based on what we've talked about here along with other questions and concerns you might have. It sounds as if you're in really goood hands and I imagine that your neurologist will have his own ideas about the risks vs. benefits of IVIG treatment, either now, later or never.
Tim
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Follow up...Yesterday one of my Neurologists convinced me to try IVIG treatments. He said that most people tolerate this better than things like steroids...had a bad experience with Predizone once for Poison Ivy....I'm still up in the air...they are mostly convinced that I have Motor Neuropothy from HIV. Although I've been on HAART for 3 years, my strength and Motor skills are declining...They are also enrolling me in an ALS study which will precisely monitor my strength and endurance every 2 months. I was told if I get any benefit it will happen by the second treatment. If not, I can just stop... The sudy will show exactly whether there is any benefit and not just a placebo effect...any feedback or experience with this would be appreciated. I'm always scared to try anything new since my body has a Hyper reaction to anything I introduce, including vitamines. If I take a vitamine D or B i fell sick (acid like feeling through my body for a day or two)...The IV takes a few hours every 3 months...afraid of what could happen...