Hi all, currently I am taking 20mg 3x a day of baclofen for the muscle spasms I have. I do not think this med is working for me anymore and am do to see my neuro on march 1st. I was wondering what works for those of you who have spasms? Any input would be appreciated 
All I can say is ask him about Gabapentin, Good Luck! Gary
I am taking 300 mg of neurontin (gabapentin) at bedtime. Just started it a month ago. I had terrible muscle spasms in my legs. They kept me from sleeping many a night. I haven't had one single muscle spasm since. I'm newly diagnosed (2 wks ago). I start IVIG next week. That said, I haven't started any other treatments - so it's definitely the neurontin working. I was very groggy at first - but that continues to improve. Prescription had me adding a morning dose. I haven't done that yet, because I don't need it. Doc said okay to that.
I just started gabapentin last week and now am on 600mg. 300mg. is a starting dose, so I’d talk with your nuerologist. Gary
I am on 1200mg of Gabapentin 3x a day and also 20mg of baclofen 3x a day and I still get bad muscle cramps in almost every muscle in my body. I hope you find something that works for you. Paul
My doctor just upped my dose of Gabapentin to 1200mg. 600mg. in the morning and 600mg. at night and right now it seems to be working, not great, but not bad either. Paul, have you ever tried Carbamazapine? Gary
No i never tried that. I do take oxcarbazepine and also desipramine besides the gabapentin. I had really bad electric shock like pains and the oxcarbazepine is really good at controlling them.
I am also taking gabapentin 3x a day 300 in the am & afternoon plus 600 at night, I know this is not the max dosage that can be taken. Maybe I will see if my neuro will up this dosage when I see him Friday, I called on Friday last week and he upped my steroids to 30mg a day and it seems to be helping some, unfortunately we are fighting with the insurance company to continue the ivig infusions. The five day loading dose helped and I am do to get another infusion however bc the insurance company denied my claim after the 5th dose my neuro will not let me continue on until we figure out who is going to pay for the infusions. So he has been in appeals process with the insurance company. We have been denied twice now. This Friday we will be discussing cellcept or methotrexate ( I am not sure that’s spelled right) as alternative therapies to ivig.
Paul, What dose are you on of oxcarbazepine, because I'm on just 600 mg. of Carbamazipne and my doctor won't increase it because it can build up a deposit in my liver. Gary
Hey Gary, I am taking 150mg 2X a day of oxcarbazepine and it seems to do the job. Paul
On what grounds can they deny IVIG for CIDP??? I am so worried this will happen to me too. A nurse from BCBS left a message for me to call her back. Been trying to get through to her without success.
LiveLaughLove said:
I am also taking gabapentin 3x a day 300 in the am & afternoon plus 600 at night, I know this is not the max dosage that can be taken. Maybe I will see if my neuro will up this dosage when I see him Friday, I called on Friday last week and he upped my steroids to 30mg a day and it seems to be helping some, unfortunately we are fighting with the insurance company to continue the ivig infusions. The five day loading dose helped and I am do to get another infusion however bc the insurance company denied my claim after the 5th dose my neuro will not let me continue on until we figure out who is going to pay for the infusions. So he has been in appeals process with the insurance company. We have been denied twice now. This Friday we will be discussing cellcept or methotrexate ( I am not sure that's spelled right) as alternative therapies to ivig.
Evie I have a variant of cidp, at least thats what they are saying… Due to one test being not where the insurance company wants it to be although all others fall within the peramiters they are denying. I hope you got through to you bcbs nurse and all was ok!