cyclemmniac, I don't even now if I'm supposed not to have that weakness and wasting at some point in the future? I wasn't promised that much by my docs. I was actually told back in February it may not be possible to reverse it, because I hadn't been getting treatment for too many years. I was happy to regain mobility in my hands, in the sense that my fingers were not dropped, for a few weeks. Right now they are dropped again in my right hand, it's good that I have next IVIg scheduled for next week. The way it is going for me, it looks like it really is a permanent and progressing disability, which can be temporarily alleviated with the treatment.
Survey: Comparing IVIg doses and results. Let's Do Science!(181 posts) (66 voices)
OK, here goes...
1) Do I have conduction block? Yes
2) Do I have elevated antibodies? Honestly don't know
3) How long have I been on IvIg? Roughly two and a half years
4) Doseage?: 300ml per day for 5 days
5) Brand? Started on Privigen, now on Viagam
6) Frequency? Every 12 weeks
7) Response to IvIg? Noticeable difference
When I had my first ever infusion, the results were brilliant. It genuinely felt like a cure rather than just a treatment. Unfortunately, subsequent infusions have had less marked results, although they are still quite effective. Change of brand led to quicker treatment as it is more concentrated. In a perfect world, I should have infusions every 9-10 weeks, as this seems to be the point that the symptoms seem to return with a vengance. Through trial and error, I now know exactly what rate to infuse at. Too quick a rate used to lead to awful headaches and chills. My neuro consultant did experiment with just giving me 3 days infusion, rather than 5, but this had almost no effect.
it looks like it really is a permanent and progressing disability, which can be temporarily alleviated with the treatment.
IVIg is not a cure. Most people need ongoing treatment, whose efficacy often decreases with time. For most people it is exactly what you describe.
It is important to settle on a treatment interval that doesn't allow you to decline too much between treatments. That way you have less axon damage, which is thought to be permanent. Some people find that getting smaller doses at more frequent intervals works well for them. It's a process of trial and error.
Replying to @Rare specimen's post:
Hey, Rare specimen. You give your dose as 300ml per day for 5 days. For 5% Viagam, that works out to 15 g per day or 75 g per treatment. If you get one treatment every three months, that works out to 25 g per month. I'm going to arbitrarily assume your weight is 65 kg, so that puts you at right at the standard low dose of .4 G/KG/month. (Figuring your dosage in G/KG/month makes it easier to compare with other people.)
I was started out at that .4 dosage. Currently I'm on 2G/KG/month. Most of us are somewhere in that range. It's really great that you're seeing so much improvement at such a low dose. You might consider discussing with your doctor getting a smaller dose more often, depending on how much decline you see between treatments. I'm not sure I would like to wait for the "vengeance" point.
It does sound like you tried a smaller dose once, and it had no effect. Something to think about, anyway. You might do some reading in the forum's IVIg topics.
My issue is that I have not experienced any improvement since I started IVIG. I know 30% of people don't respond but I also do not experience any different symptoms (worse or better) both right after my dose or as the weeks go by before my next dose. Fortunately nothing else has been affected yet. But my question is if its doing any good? There was a 8 month period (Sep, 2014 - Mar 2015) from when I was diagnosed with MMN but before I was able to start IVIG and my symptoms did not get any worse then either. I am thinking about either stopping IVIG for a bit or spreading out my treatment to 6 or even 8 weeks to see if my symptoms get worse. Maybe its not even helping or keeping it in check? I may just be one of the extremely fortunate ones with only one nerve affected and it may not be getting any worse with or without IVIG. I understand that it could potentially get worse and even if I go back on the iVIG, I may not get that loss back but I would be curious to know if anyone else has had a similar question/experience. Because MMN is so rare with so many unknowns, my doctor unfortunately doesn't have a definitive recommendation for me. I would welcome your feedback and thanks in advance.
I'm in almost exactly the same boat. My neurologist insists that the treatments are slowing the progression. I was on IVIg for about eight months before I stopped dropping fingers. I do not know if the treatments had that effect. There is always the possibility that it did help. You have only been getting treatments for five months. You might give it a year before you try stopping. Progression can be so slow that it might take a while for you to notice. In five years, it's finally started spreading to my right hand.
I figure if I ever have trouble where my insurance won't cover treatments, then I will find out for sure!
I'm shocked at the number of people in the US reporting unnecessary surgeries. Those insurance companies are really not just stealing money, they are also damaging your health. So hope we will not come to this point in Europe. Sorry, it's a bit off-topic.
1. Do you have a demonstrable conduction block? Yes
2. Do you have elevated IgM antibodies? Yes, VERY HIGH anti GM1 - Ratio was 1:102,400 , normal titer is <1:800
3. How long have you been on IVIg? 4 years now
4. What is your dose in g/kg? Currently .6g/kg. Started at 1.8g/kg 4 years ago. Have slowly been lowering rate.
5. Brand of immunoglobulin? Gammunex
6. What is your current frequency? Every 4 Weeks
7. Rate, on a scale, your response to IVIg. No Noticeable Benefit, BUT, when I first was getting the meds my answer would have been YES. I thankfully do not have a drop off in weakness anymore, I am in a "maintaining mode", and we have been adjusting my dose down and will do so if I see a drop off in strength.
8. In year two of my diagnosis I started treatments of Rituxan, these treatments lasted two years. My doctor thinks (in theory) this has helped me maintain my strength and is one of the possible reasons why we have been able to lower my IVIG dose.
I'll share my answers, even though I don't have the first two. I now know what to ask my neurologist the next time I see him!
1. Do you have a demonstrable conduction block? Don't Know
2. Do you have elevated IgM antibodies? Huh? ;-)
3. How long have you been on IVIg? almost 8 years
4. What is your dose in g/kg? 2 g/kg. A total of 135 grams administered over 3 days. If you are doing the Math, yes, I'm slim ;-)
5. Brand of immunoglobulin? Gammaguard
6. What is your current frequency? Every 4 Weeks
7. Rate, on a scale, your response to IVIg: Like New
8. Essay, optional: I take half a dose of benadryl (1 tablet instead of two) -- otherwise I get a rash/irritation right around the IV site. I also take Tylenol, as it helps with the headaches. If the headache becomes severe (as it does occasionally) I add Advil.
I found that staying very, very well hydrated starting about 2 days before the infusion, continuing during the infusion itself, and for another 2 days or so, helps a lot with the headaches.
Sugar, however, seems to make the headaches worse. So, hydrating with electrolyte water or coconut water is much better, for me, than drinks like Gatorade which contain a lot of sugar (I use stuff with electrolytes instead of pure water hoping it will also help with cramps and fasciculations, which I get constantly). I don't particularly like the taste of tonic water :-)
At one point my pharmacist had a hard time finding Gammaguard so they tried Octagam for two months. I had severe migraines both times. Doing some research I learned that Octagam contains maltose sugar, which seems to confirm that, for me, sugar contributes to the headaches. I still get headaches with Gammaguard, but they are usually mild and easily handled by OTC NSAIDs.
My infusions typically last close to 5 hours each day.
Usually I start to get mild symptoms 2 or 3 days before each infusions. They are usually very mild, but sometimes they appear sooner and stronger. The only "patterns" I have found on months where this happens is either a lot of stress (work, etc) or months where I travel by plane. If this continues I might ask my neurologist to increase the dose slightly.
Typically all my symptoms will completely disappear a few days after the infusion. All I have left is a barely noticeable weakness in my right foot and right hand, but not enough to affect me in any way (other than, perhaps, being unable to open tightly closed jars).
I consider myself very lucky that my symptoms react so well to IVIG.
They started me out the first few years on Flebogamma. This decision was based, I believe, solely on cost considerations by my hospital's contract pharmacy. At one point they switched everybody to Octagam. I know at least three people at the hospital with other autoimmune conditions complained that it was not as effective and got switched back to the Flebo. Later, I managed to source my own immunoglobulin and started getting Gammagard, mainly because it's stabilized with amino acids and not a sugar. While I had had severe headaches and "flu-like symptoms" with my Flebo loading dose, and occasional milder headaches with the Flebo over the course of years, I don't remember ever getting a headache with Gammagard.
I also always made sure to stick to a speed limit of about 180 mL/hour. I preferred to avoid side effects by slowing the dose down rather than taking other medications.
My, then 17 year old, very athletic (rower) son was diagnosed with MMN last November and has been receiving IVig since December. He is receiving Gammagard and got through his first 3 load doses (every 4 weeks) and then the Doctor cut the dose in half and were administering every 3 weeks but his condition began worsening after the 3rd, half dose treatment, so I finally got the doctor to increase the dose again. He is a bit discouraged, thanks mostly to the PA who is a heartless, young brat. After he told her he was "kind of depressed" about his disease and would it shorten his life, she told him "yes, it actually can attack the nerves that control your breathing and kill you"...she also said you will continue to decline and get more and more debilitated. I wanted to kill her but managed not to. Since then he's been pretty resigned to the prognosis she gave him. Meanwhile I am NEVER going to give up on researching a way to RESET the immune system! Has anyone tried fasting?? Katherine
Get a different doctor. Not only was what she told him incorrect (the part about breathing and shortening his life, at least as far as MMN goes), that's a terrible attitude. Especially talking to a kid with such a serious diagnosis. As a matter of fact, I would even file a formal complaint. The more I think about that the more steamed I'm getting.
You say that's a PA. What about the actual doctor? Is that the only doctor you saw? With something that is considered progressive and incurable, I would definitely seek out second opinions.
I'm curious what made you ask about fasting, as that is one of my Things :)
If you haven't already found the thread on it, here you go: Fasting resets the hematopoietic immune system and Multiple benefits of a low-carbohydrate diet. For what it's worth, I took the information about the fasting studies to my neurologist at the Mayo Clinic this spring and he was fascinated.
Thank you for you reply! I am desperately trying to find out M O R E!!!!! I read about fasting somewhere, I'll try to find the PDF and, yes, when I saw it in your blog I was intrigued.
The "REAL" doctor is totally different from the PA and I don't think he really understands her sickening attitude. Every time I try to get the word to him, SHE intercepts it. I think that I will lodge a formal complaint but have been afraid of rocking the boat. We have seen two neurologists, one is a neurosurgeon. The first doctor did all of the work finding the diagnosis but referred us to Dr. Tuan Vu, who is her colleague and specializes in MMN at University of South Florida.
My son is going off to college in the fall but will only be about 2 hours away by car. I had asked the PA if he could get his Ivig as a SubQ, as he would be able to administer it himself at school, and she said "No, his insurance wouldn't cover it and it isn't possible." Well, I mentioned this to Dr. Vu last time I saw him and he said "Yes! I think he is a GREAT candidate for SubQ, we are doing a study with it here! I'll write a letter to the Insurance company and get it approved." The stupid PA just stood there with that sneer on her face...but I just BEEMED!!! LOL!!!!
When you get a chance, please tell me how/if fasting works for you and if so, HOW do we start??!!
Thanks again for replying it means a lot to "connect" with someone who knows more than we do. I'm trying to get my son, Phillip, to join your group and he seemed genuinly interested he's just busy with summer, girls, work and getting ready for college :)
Look forward to hearing from you! Take good care and Happy Independence Day!!!
1. Do you have a demonstrable conduction block? No
2. Do you have elevated IgM antibodies? No
3. How long have you been on IVIg? Five months
4. What is your dose in g/kg? 2g/kg
5. Brand of immunoglobulin? Grifols gamunex-c
6. What is your current frequency? Every 4 Weeks
7. Rate, on a scale, your response to IVIg. No noticeable benefit yet.
8. Essay, optional. The first two months I had bad headaches after day two (I get 150gms over three days, max 360g/hr but start out at 45g/hr: 30gms day one and 60gms each of day two and three). I don't get headaches now: I get Tylenol and I drink coconut water or other electrolyte drinks the day before and the days of infusion. I do notice my fasciculations are worse after infusion - for a few days. I have my first meeting with the neurologists this coming Friday and will see if they have thoughts. I have not yet been diagnosed with MMN.
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