Survey: Comparing IVIg doses and results. Let's Do Science!(181 posts) (66 voices)
1. Do you have a demonstrable conduction block? Yes
2. Do you have elevated IgM antibodies? No
3. How long have you been on IVIg? 3 months
4. What is your dose in g/kg? 1g/kg
5. Brand of immunoglobulin? Gamunex
6. What is your current frequency? Every 4 weeks
7. Rate, on a scale, your response to IVIg. Substantial
8. Essay, optional. Elaborate on any or all of the above, including how long it takes you to notice improvement.
Weakness is currently confined to my left hand; Before treatment I had no extension of my last three fingers, no abduction of my little finger, weakened wrist dorsiflexion and weakened grip.
Since treatment "no" can be changed to "weak" above and I have regained some wrist and grip strength. My last three fingers still don't extend fully, but enough for most tasks. I rate my response "Substantial" because this modest improvement has had a disproportionate impact on my ability to perform daily activities, from tying my shoes to reaching to grasp objects. I can even sort of touch type if I hold my left hand poised over the keyboard rather than resting on the wrist pad.
Improvement is noticeable within 2-3 days of the end of treatment, continues for around a week, plateaus for around another week and then declines slowly and intermittently until next infusion.
Side effects: Severe headache during loading dose, as a result of which I only got up to 0.8g/kg. Since then the infusion rate has been limited to 100mL/h and my maintenance dose has been spread over four days; Now the only side effect is a headache starting on the second day of treatment and worsening through to the day after the end of treatment, fading the day after that.
I just had my fourth infusion and have a follow-up with my neuro in a week or so to discuss my progress and potential changes to my treatment regimen.
I don't know if you've had your appointment yet, but I hope you will discuss shortening up your interval. If you start to decline before your next infusion, permanent axon damage might start to accumulate.
For what it's worth, when I switched from Flebogamma to Gammagard Liquid, I stopped having headaches (knock wood) and I have even speeded up the infusion rate to about twice as fast as before with no ill effects. Yet. It's been about 15 months.
Thanks for the advice, which was as timely as my response is belated!
I did discuss my interval with my neuro and consequently we are working on reducing it to three weeks, though scheduling is a challenge given it currently takes four days to get my maintenance dose.
My neuro is open to changing brands, but since my side effects seem to be getting milder I plan to try increasing the infusion rate and/or daily dose with my current brand first.
It's great to hear you stopped having headaches and have been able to increase your infusion rate by changing brands! I hope that continues.
1. Do you have a demonstrable conduction block? No block but very slow responses
2. Do you have elevated IgM antibodies? No, the test came back negative
3. How long have you been on IVIg? Just had my second treatment
4. What is your dose in g/kg? 1 g/kg, spread over two days
5. Brand of immunoglobulin? Octagam 5%
6. What is your current frequency? Every 4 Weeks
7. Rate, on a scale, your response to IVIg. Slight so far, noticing more this second time than the first, so maybe it'll be even better next month.
My rate starts slowly and ramps up to 200 and seems fine, only a very slight headache the next day, quite tolerable.
After the first treatment I didn't really see much improvement. After the second a month later, the next day I found myself able to get up from a chair much more easily, almost normally, and I seem to be walking more smoothly (still hanging onto the walker though, I've had too many falls to try walking without something to lean on. Drop foot in both feet.)
I'm not noticing the internal trembling in the legs and am not having the itchy hands.
I was able to walk down the slight slope of the driveway and also a ramp outside a restaurant without using the walker brakes with every step - this is definitely an improvement. Going down slopes has been terrifying for the past six months.
I'm scheduled to see the downtown neurologist after the third round and hope that he will see enough response to justify turning this IVIG trial into ongoing treatment.
Hi stumbling, I'm glad you're seeing some improvement. At least they started you out at a reasonable dose of 1g/KG/month, rather than the .4g that seems to be standard for a lot of doctors. I talked mine into increasing it to 2G. There's a topic here about a study involving increased dosage.
My doctors have me at the maximum dose of 2g/kg every 5 weeks; it works well, and it seems to be their usual practice.
1. Do you have a demonstrable conduction block? yes
2. Do you have elevated IgM antibodies? No
3. How long have you been on IVIg? had four treatments so far
4. What is your dose in g/kg? 2 g/kg, spread over four days
5. Brand of immunoglobulin? Flebogamma
6. What is your current frequency? Every 5 Weeks
7. Rate, on a scale, your response to IVIg. Excellent, restores 90% of functions. I am almost able to forget I have MMN in the meantime (not quite).
It will be interesting to see what happens after round three. I don't know if Medicare requires a drop to .4 g/kg or if they leave the dose up to the doctor.
Hi aneczka, Great to hear you are seeing such impressive results from IVIg after suffering from what sounded like significant weakness in both hands! Do you notice any decline toward the end of the five weeks or does it remain stable until the next infusion?
Thanks for the link. One of the doctors in my neurologist's team told me I was on my maximum dose; with that she meant 2g/kg, for whatever reason.
cyclemmniac, I still have that weakness in both hands; muscles are wasted in both, to be precise. Now I just want to have some movement restored, and it happens with IVIg. My hands are by no means normal. Last time my movement abilities declined towards 5th week; maybe 4th actually, I'm not sure. I'm really tired of this whole story :( IVIg is doing a lot, but it's not a miracle cure either.
One of the doctors in my neurologist's team told me I was on my maximum dose; with that she meant 2g/kg, for whatever reason.
This just goes to show how little agreement and consistency there is among doctors. I believe this is a true indicator that they just plain don't know much about MMN, how to treat it, and even how IVIg works. That is why we need to arm ourselves with as much information as we can, including information about other people's experiences.
I'm going to see a new neurologist soon, because I moved places and need to be treated locally. Interested what he will tell me and how they will treat me.
Greetings all. I haven't posted to this site in some time but had a question. I was diagnosed with probably MMN and I have been on IVIG for 5 months now (2g/Kg over 3 day period every 4 weeks). My initial issue was weakness in my left fingers only (not in my palm/grip) with cramps and twitches along with some wasting away of the muscle in my left hand. It was originally thought to be an ulnar nerve issue, had surgery which didn't help, and was then referred to neurologists (I see Dr. Goldstein in NYC but also saw Dr. Cornblath at Hopkins). Cornblath thought it was either MMN or ALS (wouldn't commit to either) but as I have had these primary symptoms for over 2 years now, Goldstein thinks its MMN and started me on IVIG.
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.
aneczka, I'm sorry to hear that you still have weakness and wasting. Based on your earlier description I was excited that someone was getting such good results from IVIg, but I guess everything is relative where MMN is concerned. I wholeheartedly agree that IVIg is no cure.
Like you, I regained mobility in my involved hand but there is still weakness and some wasting. I think I have regained a bit of muscle mass, but considering I have never found it easy to put on muscle I expect it to take time.
I hope you see some further improvement.
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