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IVIg- What did it do for your LEMS symptoms?
I am not shy about sharing the fact that IVIG has been an incredibly beneficial treatment for my LEMS symptoms. Prior to IVIG my swallowing was extremely compromised, my voice lost inflection, and doing anything extra in my day caused extreme exhaustion for days after. When my IVIG is wearing off, at about 3.5 weeks after my treatment, my energy levels bottom out. I know that my body is ready for another treatment. It’s been amazing what happens for me when my antibodies are stopped by the donated antibodies of immunoglobulin. How about you? Did IVIG make a big difference in your LEMS symptoms? How long did it take of having treatments before you noticed a difference?
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17 Replies
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I had five back to back days of IVIG at the beginning of October when my neurologist was first suspecting LEMS. After a few days following the 5 days I actually felt a pep in my step! It was amazing! It then took almost 3 months for insurance to approve 1 day monthly IVIG. I had my first dose since October on Monday. It is now Saturday and I’m disappointed I’m not feeling the results I had the last time. Is this normal? I wonder if it is because I had gone so long or that I had 5 days the last time. I’m wondering if any others initially felt the difference or if it needed time to build up. I know they used a different brand this time. Last time it was Gabapentin(?) and this time it was Privigen.
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Carmen,
How many grams did you get on Monday? I find it common to have my weekend after my treatment being tired and feeling icky, and then I get the boost and benefits soon after. I get 90 grams every 4 weeks….starting on Monday’s but extending for three full days.
Be sure to let your neuro know how well you do, or don’t, respond this time. He may need to do another loading dose.
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I had this week off of work as I’m a teacher but didn’t even think about that. I scheduled the next one for a Monday as that is 4 weeks but I may want to reschedule. Not sure if they could move me up to the Friday BEFORE or have to wait until the next Friday and just be a few days over. I got 25 mg. That was the daily amount they gave me last time too. They said it’s based on weight – no? I am still hopefull I’ll start to get the pep in my step but we will see. If I don’t, I’ll let my neurologist know but I’m worried he’d have to put in a new request with insurance and they gave him SUCH a hard time! He ended up having to do a peer to peer review and after speaking to him they decided it WAS medically necessary but I’m worried about rocking the boat! :/
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You are a teacher! That’s amazing!!
The loading dose is 2g/kg. The maintenance dose for IVIG autoimmune protocol is 1g/kg. Unless you weigh 55 lbs, that dose isn’t the correct maintenance dose. Definitely keep your neuro in the loop. Try not to be scared of your insurance company. They have done the peer to peer review and realized it is needed. It is normal for it to take a while to figure out your best dosing.
For example, I started on 2g/kg every six weeks. The dosing was horrible migraine-wise. And, because the half life is 3.5 weeks, I’d crash starting around the 4th week. My neuro and I went back to the drawing board and decided to try 1g/kg every 4th week. I get pretty tired in the few days leading up to it but overall do REALLY well with that schedule.
As far as a day early vs. a few days later, double check with your infusion center to see if they can check with your insurance company to see if it would be an issue. I’ve had to tweak my dates before and usually it’s my infusion center that reaches out to my neuro if a new order is needed.
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Hahaha! Definitely NOT 55 lbs! Are you sure it’s off of lbs? When they weighed me and did the calculation it was kgs. I am 64kg (can’t believe I just shared my weight on a public forum! ha!) so they round to the nearest which was 25. If I don’t feel the results I did the last time (5 days of 25 mg) I will know I need to reach out or make a follow up appointment. Right now I’m not scheduled to see him until May. :/ Thanks for all this great info!!
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I converted your dosage to lbs to figure out where your dosage was set at based on the dose you shared. Based on your kgs, you should be getting around 60 grams per dosing. 1g/kg . The smaller doses are for those with autoimmune suppression whether from chemo or other chronic illness. In order for IVIG to work for the autoimmune disease state, the donated antibodies need to flood the system and take over, not just enhance. That would make sense as to why you aren’t feeling the typical boost.
As far as posting your kgs, it would take someone figuring out how to convert them 😉
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Thank you, Dawn! Where did you get that information? I know my doctor will want to know where that medical information is located. As I said, I’m his first LEMS patient so I know he is learning. 🙂 Yes – last time I had 5 days so the total was 125 mg. Yes – makes sense why I haven’t felt a difference yet. :/
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Hi Carmen! Welcome to the wonderful world of IVIG. As background, I do 90 grams immunoglobulin every 4 weeks, over two days. To answer your original question, yes I’ve found it takes a number of infusions to get to a happier place, that lasts the 4 weeks to your next infusion. I’ve felt like I continued to improve, and at 6 months, feel I’m getting pretty good effect into that fourth week. And I also believe the goodness can vary dose to dose. Whether it’s me going into differently, or the variability of pooled antibodies, I can’t say. I hope you can get on a good schedule and begin to build up to a good, therapeutic level.
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Thank you, Price! I was wondering if that was a possible factor too. My husband joked I must have gotten a batch from procrastinators! Ha! Hopeful it will kick in but I’m wondering if the monthly dose that was approved by insurance is too low (25 1x/mo). 90 seems like a lot! It must take a loooong time! I know I was there just over 3 hours with just 25!
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Carmen it’s in the PIS for IVIG, have him look at the dosing for CIDP, which is another neuromuscular disease that they treat with IVIG.
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Thank you, Dawn! I will check that out and share it with him!
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IVIG has also been life changing for me! It took me a couple of months to gain maximum effect but I noticed a big difference right away! I’ve actually been lucky enough to return pretty close to my base line although I’ve made some adjustments and plan my life around my treatment which is every 4 weeks
Carmen, the usual dose of IVIG for LEMS is 1mg per kg of your body weight, some doctors space the dosing out so I get two days of IVIG with 1 mg per kg. I weigh about 60 kg so that’s how much I get per day. It does take quite a while at the infusion center, but it is really worth it to me! I also take only 3-4 bumps so my rate is pretty slow and I’m usually there about 6 hours per day.
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Thank you for the additional info, Ashley! Glad to hear you are close to your baseline! Very encouraging! 🙂
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My 14 year old daughter was diagnosed with LEMS in August. She had her first ivig treatment in November and it has made a tremendous difference. Before ivig, she couldn’t walk without assistance, she gagged on her food, slurred her speech in the morning, had to lift her arm with her other hand to take her morning meds, etc. After two rounds of ivig, all of those symptoms have disappeared. She is gaining weight (she had lost fifteen pounds and at only 80 pounds that was a lot), her balance is much better, no more slurred speech, her smile is back!!!!! We are praying for continued healing as she continues her monthly ivig and we have hope that she can do anything she wants to do in this life!
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Lori,
That is absolutely wonderful to read!!! There is no doubt that IVIG has allowed me to live my best possible Life with LEMS thanks to IVIG. Many patients across multiple disease states refer to IVIG as “liquid gold”…..it is amazing the difference it makes!!
I’m beyond thrilled for her and all of you that love her!!
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All,
I took this treatment only twice. first in 2004 when I was diagnosed with Lems; and the second in 2016 before I suffered from severe anemia. In both cases the effect was not important, not made a big difference. The dose was 2 mg of Previgen. Quantity I remember is related my weight. The treatment was 5 days for 3 hours each time.
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Hi Andrea,
Many patients have experienced IVIG taking several tretments, over several months, before they see any marked improvement. I was fortunate to see improvement with the first round; but it kept improving over the following months for a full year!
I’m sorry it didn’t work out for you. What treatments are you on now?
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