I was wondering if anyone is taking any other medications to treat their CIDP besides the IVIG infusions or prednisone? Specifically anything like gabapentin (Neurontin)? I had been started on Neurontin for "nerve pain" by my medical physician prior to being officially diagnosed by my neurologist with CIDP and being started on IVIG.
One day I was in my neurologist's office and had an episode of terrible lower back pain, quite similar to sciatica, where I couldn't even straighten up to walk out of her office. She asked me how much Neurontin I was taking and I told her my medical doctor had me on 100mg three times/day. She said "that's a baby dose!" and told me to take at least 300mg three times a day and that I should go home and take 300mg right away because I was having such bad sciatic nerve pain. I did what she said and continued to take the increased Neurontin dose right up through the weeks of waiting for the official diagnosis of CIDP after having a spinal tap. Once I had the first couple of IVIG infusions I had the aseptic meningitis reaction with a couple of days of vomiting and headaches and taking the Neurontin fell off my radar. This was back in November and I have not restarted taking it.
I'm now in between my second and third month of 2 days every 4 weeks of infusions and I'm really feeling bad. My lower back has started to hurt very badly again besides the numbness in my legs returning to the pre-IVIG infusion levels. I'm due for round #3 of IVIG next week--maybe that's why I feel so bad?
Sorry for what seems like a rambling post but I'm kind of getting down in the dumps. I was feeling much better s/p the first loading dose of IVIG (after the aseptic meningitis let up) and definitely after month #2 of the two infusions, but now feeling like the old symptoms are returning have led me to believe that maybe this IVIG is not going to do the trick for me. Anyone with experience with other medications besides the IVIG, please reply!
I was diagnosed with CIDP about 13 months ago. I now get 70g IVIG a month. Saw my Neurologist a few months ago and asked if anything could be done about the numbness/tingling in hands and feet. She put me on 100mg Gabapentin. She said try one at bedtime first and I could take up to 2 more over the course of the day if needed. So 300mg/day max. I have been taking one at bedtime and occasionally one more during the day when I start to relapse. That dosage has been working for me. Doesn’t eliminate the numbness/tingling but reduces it significantly. I do not take any other meds for CIDP.
I agree with the 300mg total per day since that was what my regular medical physician first prescribed as the maximum dose. She said to start it at bedtime also because it might make me sleepy, which it did at first. I think the 300mg/day may have been holding me up until that bad episode which happened to be occurring the day I had my neurology appointment. Apparently doses of Neurontin can be very much higher, almost 3000mg daily in some cases for other neuropathies. I'm not a great medication-taker by nature so even taking the 3 pills/day was a big deal for me. Thanks so much for the quick response!
Rfisher7381 said:
I was diagnosed with CIDP about 13 months ago. I now get 70g IVIG a month. Saw my Neurologist a few months ago and asked if anything could be done about the numbness/tingling in hands and feet. She put me on 100mg Gabapentin. She said try one at bedtime first and I could take up to 2 more over the course of the day if needed. So 300mg/day max. I have been taking one at bedtime and occasionally one more during the day when I start to relapse. That dosage has been working for me. Doesn't eliminate the numbness/tingling but reduces it significantly. I do not take any other meds for CIDP.
I was Dx'ed with CIDP in July 2012. I was prescribed Neurontin/ Gabapentin and took it for about 2 weeks. It made me neurotic and my wife disallowed me taking it again. I was then moved on to Lyrica/Pregabalin. this too turned my life into a misery. I now take nothing but Oxycontin for pain (which the Doctors are weaning me off of) other than that I have nothing to fall back on.
I can and do live with the (modest) nerve pain, but the muscle cramps are a killer, like when I stretch or yawn, the cramps are debilitating. The IVIG works well enough for me and I am able to "be almost normal" for about 2 weeks of the month in between infusions every 4 weeks. The other 2 weeks, I am unable to walk through the house. Feel quite unwell (half way sleepy, the other half just feeling unwell) By the time the fourth week arrives, my body reminds me why I need the IVIG i.e. wobbly, moving like Jagger, slurred speech, and my favorite "little tiny dinosaur arms"
I was started on Gabapentin almost a year before my CIDP diagnosis. I started out at 100mg 3xday. But it had no effect on my nerve pain. My primary kept increasing it to 900mg a day. I kept having severe pain so my neurologist started increasing it. I am currently taking 1200mg 3xday--3600mg. I also take Tizainadine a muscle relaxer 4mg 3xday. I started IVIG Oct. 4th and have it every Thursday. It took quite awhile for me to notice any improvement. But then I noticed my legs were stronger, my mind was clearer. Then I had a fever and was down for 2 weeks. All I did was sleep. This last treatment has been good. The fatigue is still there, slurred speech, wobbly walking, but I felt better. I have severe numbness in my feet and lower legs. It never goes away. I was also having numbness and pressure in my chest wall, it has finally improved. Also my feeling of "not feeling quite right" has improved.
Wow. So what I'm hearing then is people DO have to take other medications and there is quite a variety of needs and dosages, even just from this small group of responses. I do think I'm going to have to take something. Right now I'm on break from my teaching responsibilities, but in a couple of weeks I go back to university teaching full-time and it's going to be quite a challenge. Just trying to even lug my "rolley" bookbag around and walk across campus is going to be brutal. Last semester I was fortunate to have all my classes scheduled in one building where my office was located. This semester, I'm not so lucky. Right now it's been hard to walk from my family room down to the basement. Stairs are especially brutal on the legs and back! Two more doses of IVIG this week before semester starts, but I doubt they'll make that much of a difference.
I have been on 300mg of Gabapentin at bedtime for many years prior to my Diagnosis of CIDP. I recently had a severe flar of Trigeminal Neuralgia and it was recommended that I add 100mg once or twice during the day as well. This flare lasted 3 weeks and left as suddenly as it appeared.
I am not a medication person and have returned to my original 300mg at bedtime. I also take Baclofen for severe muscle spasms...My doctor feels these are caused by my nerves being so sick and irritating the muscles. My IVIG is weekly, however, I feel a significant decline 2-3 days before my next dose.
Thanks so much for your input. I did start up my Gabapentin 100mg, 3 times/day again because the aching was just too much to bear going about my daily tasks. I'm on the IVIG every 4 weeks and infusion week is next week. I guess my body is telling me it's time to make sure I make time to still and take the infusions. I also suffer from migraines which have decided to kick back in again just to stir up more annoyance for me, and I take Topomax 50mg at night also. Today is a particularly bad day so I had to take Relpax for a bad migraine.
It's interesting you mention the bad muscle spasms. I tend to have them in my lower back and calves. I don't take anything regularly for them, I just try stretching them and doing a core exercise a physical therapist taught me when the back muscle starts to spasm, but it is hard to go about one's life with this constant reminder that the nervous system is on overdrive.
I do appreciate your response! Good luck to you as well!
bluemoody said:
I have been on 300mg of Gabapentin at bedtime for many years prior to my Diagnosis of CIDP. I recently had a severe flar of Trigeminal Neuralgia and it was recommended that I add 100mg once or twice during the day as well. This flare lasted 3 weeks and left as suddenly as it appeared.
I am not a medication person and have returned to my original 300mg at bedtime. I also take Baclofen for severe muscle spasms...My doctor feels these are caused by my nerves being so sick and irritating the muscles. My IVIG is weekly, however, I feel a significant decline 2-3 days before my next dose.
I've been on so many different pain killers like Oxycodone I can't remember them all. Right now I'm getting my IVIG every three weeks and I'm not sure if that's helping, but because of the extreme pain I'm afraid to cut back on it. Gary
I have never been a medication person but the pain and spasms non stop have changed that . I take 1800 mg of gralise it’s a time release gabepentine . Then as needed supplement with an additional 600 mg of gabepentine and at night a hydrcodone this helps me sleep without too much pain. If I am feeling better I don’t take anything or very little above the gralise.
I think the Gabenpentin may be doing the same thing to me. I have severe like sciatica pain but I have been checked out and there is nothing wrong but it goes in my back buttocks, hips, and all around my thighs. The pain is extremely bad. I've become home bound and I hate it. I've been on Gaberpentin before and it did nothing and then switched to Lyrica which seemed to be a miracle. This was all before CIDP. I'm not sure what happened but it mixed wrong with the rest of my medications and I completely lost my thinking to where I could only see things in my mind but couldn't get it out of my mouth. Even names of people.
I'm currently on 300 mg 3 times a day and it's not doing anything for the pain. I'm also on the Fentanyl patch. I have been thinking horrible thoughts due to the pain but I also wondered if it could be because of the Fentanyl patch so I've asked to be taken off it. But maybe it's the Gaberpintin? All I know is it's not helping my nerve pain and I feel I'm going a bit crazy too.
Bob Button said:
I was Dx'ed with CIDP in July 2012. I was prescribed Neurontin/ Gabapentin and took it for about 2 weeks. It made me neurotic and my wife disallowed me taking it again. I was then moved on to Lyrica/Pregabalin. this too turned my life into a misery. I now take nothing but Oxycontin for pain (which the Doctors are weaning me off of) other than that I have nothing to fall back on.
I can and do live with the (modest) nerve pain, but the muscle cramps are a killer, like when I stretch or yawn, the cramps are debilitating. The IVIG works well enough for me and I am able to "be almost normal" for about 2 weeks of the month in between infusions every 4 weeks. The other 2 weeks, I am unable to walk through the house. Feel quite unwell (half way sleepy, the other half just feeling unwell) By the time the fourth week arrives, my body reminds me why I need the IVIG i.e. wobbly, moving like Jagger, slurred speech, and my favorite "little tiny dinosaur arms"
I was diagnosed with CIPD in the form of neuropathy in my feet. I had 3 sessions of IVIG last year but due to having had my medical coverage downgraded, I can no longer do that and, besides, IVIG didn't make that much of a difference in my case. At the beginning of this year I began using natural products by a company called Plexus for weight loss and I've lost 20+ pounds and look forward to losing more ( I need to lose at least 80 lbs more.) My point of adding to this discussion is to say that Plexus has a line of chronic pain relief products, I've attached a couple of videos made by Dr Dennis Harris who developed these products for Plexus. Please take the time to look at them. I am a distributor and If you want to find out about how to get this line, you can contact me.
Hi! I was diagnosed with CIDP in 2010 and I took Pregabalin 75mg everyday at night. It worked perfectly fine for me and now I'm in remission. Every once in a while, if my limbs hurt so much that I can't walk well, I re-visit my neurologist and he prescribes the medicine again... it just takes a few days and I'm good again!
Hi! Is that the only medication you took? Did you ever have IVIG? Just wondering how you achieved remission.
Thanks!
BelenLaborde said:
Hi! I was diagnosed with CIDP in 2010 and I took Pregabalin 75mg everyday at night. It worked perfectly fine for me and now I'm in remission. Every once in a while, if my limbs hurt so much that I can't walk well, I re-visit my neurologist and he prescribes the medicine again... it just takes a few days and I'm good again!
Hi Cookie! I've been in hospital under IVIG for 5 days in a row back in April of 2010. I don't remember what the amount was, I'll have to ask someone in my family... the only thing I remember is that they gave me a bigger those that they usually give to immunosuppressed patients. After that I went to rehabilitation for several months... at least 5 or 6 and I continued doing the exercises at home. After a few months my neurologist said he would make me take another round of IVIG but before that they performed another EMG on me and this time it turned out that my nerves worked fine again and the myelin was back but my muscles didn't work properly (I had distal damage, not axonal)... so they decided not to give me more IVIG and continue rehabilitation and taking pregabalin. One day I stopped taking pregabalin and it worked fine for me and my limbs moved properly all over again :) Last year I went to visit my doctor and my reflexes were gone again and I had pain in my hips, but that just lasted a week. Sometimes I feel numbness or a little bit of pain but it goes away quickly. I try not to think about it a lot, and if it happens I just start saying "It will go away. It will go away. It will go away" like a mantra and it goes away. What doctors haven't been able to work out is why I have tinnitus... it doesn't always happen. In fact, I haven't had tinnitus in a few months... but when it happens it bothers me. It's this noise in my head I can't run away from. But, above all, I'm great :)
Cookie said:
Hi! Is that the only medication you took? Did you ever have IVIG? Just wondering how you achieved remission.
Thanks!
BelenLaborde said:
Hi! I was diagnosed with CIDP in 2010 and I took Pregabalin 75mg everyday at night. It worked perfectly fine for me and now I'm in remission. Every once in a while, if my limbs hurt so much that I can't walk well, I re-visit my neurologist and he prescribes the medicine again... it just takes a few days and I'm good again!
Hi, perhaps it will take a minute for the IVIG to put you in remission. I had aseptic meningitis with gamaguard infusions with IVIG. I take 200mg of imuran which takes 6-8 months to kick in. And 20mg of prednisone and Octagam IVIG infusions every 8 weeks for 5 days. But right now I'm on hold because my blood clotting factor is out of whack and my neurologist does not feel comfortable with the infusions. He wants me to be therapeutic. So, I've been out of remission since February and feeling lousy.
You may be alergic to the IVIG. I have been on it for over 4 years and been thru many different brands. I do get the following reaction, headache, fever, acid reflux and trouble breathing-tightness in chest (I also have asthma). The IVIG has made a huge difference and has slowed down the progression of the CIDP weekness and pain so we needed to work around the other issues. I get 125 iv steriods, 2 tylenol, 50mg of benyadryl and a pepsid 30 mintues before the IVIG. These seems to help the reacations. Also drink a TON of water the day before, that morning and during. This really helps the headache and makes your veins easier to access. The last brand I was on was Carimune....the hospital switched contracts the beginning of the year. It caused severe problems with my respitory and also did not have the same effect on my energy or pain. I switched hospitals so I could get back Privigen which is working much better and was what I was on. Right after the infusion I stay on a taper dose of predisone to help with the reaction...20mg 2 day...10mg...2 days...5mg 2 days. Inbetween the IVIG (41g every 4 weeks) I take Gabapentin 600mg 4x daily as needed. The first couple weeks I can just take two a day....getting closer to the next infusion I need to take more. I take the Tizainadine a muscle relaxer 4mg only at night most night and bad days take half a pill 2mg during the day up to 3x daily. It is a game to figure out what meds do what in your body and you need to contol what you take when based on how you feel. Keep a Journal....we have no memory anymore....this helps to see what different drugs are doing....try to introduce one at a time like a baby with baby food so you know which one is doing what. It does take several different drugs to manage this but try to take only what you need. Physcial therapy is a huge help....get those core body muscles strong. Water therapy worked the best and caused the least residual pain from the treatment. Make sure it is a warm therapy pool...a saltwater is best least reaction on skin for me.
Hang in there....you are your best Doctor. You know your body better than anayone.
Your post was very helpful to me today. I like your advice about keeping a journal. It really is an excellent way to chronicle the challenges that occur on an almost daily basis because it is easy to forget all of the discomforts that crop up. By watching out for signs/symptoms, maybe I can head off some of the spasm episodes by taking muscle relaxers before they get too bad. I have not yet perfected a medication regimen like the one you described here.
I just finished day 2 of my every 3 week dose of IVIG. I have learned to add plenty of oral fluids along with the liter of IV fluid they add and the IV steroids. I haven't had a headache like the first one back in November since then, although I have had less severe headaches in the days following the IVs. I know I need to start exercising and need the guidance of a good physical therapist who knows about this condition. I am finding out that we do need to be our own doctors and researchers and definitely advocates when dealing with this condition. I am grateful for this website and the contributions of others who are dealing with this disorder and reaching out to each other in support.
Thanks for your prayers and hugs and I send the same to you...
ctcidp said:
Cookie,
You may be alergic to the IVIG. I have been on it for over 4 years and been thru many different brands. I do get the following reaction, headache, fever, acid reflux and trouble breathing-tightness in chest (I also have asthma). The IVIG has made a huge difference and has slowed down the progression of the CIDP weekness and pain so we needed to work around the other issues. I get 125 iv steriods, 2 tylenol, 50mg of benyadryl and a pepsid 30 mintues before the IVIG. These seems to help the reacations. Also drink a TON of water the day before, that morning and during. This really helps the headache and makes your veins easier to access. The last brand I was on was Carimune....the hospital switched contracts the beginning of the year. It caused severe problems with my respitory and also did not have the same effect on my energy or pain. I switched hospitals so I could get back Privigen which is working much better and was what I was on. Right after the infusion I stay on a taper dose of predisone to help with the reaction...20mg 2 day...10mg...2 days...5mg 2 days. Inbetween the IVIG (41g every 4 weeks) I take Gabapentin 600mg 4x daily as needed. The first couple weeks I can just take two a day....getting closer to the next infusion I need to take more. I take the Tizainadine a muscle relaxer 4mg only at night most night and bad days take half a pill 2mg during the day up to 3x daily. It is a game to figure out what meds do what in your body and you need to contol what you take when based on how you feel. Keep a Journal....we have no memory anymore....this helps to see what different drugs are doing....try to introduce one at a time like a baby with baby food so you know which one is doing what. It does take several different drugs to manage this but try to take only what you need. Physcial therapy is a huge help....get those core body muscles strong. Water therapy worked the best and caused the least residual pain from the treatment. Make sure it is a warm therapy pool...a saltwater is best least reaction on skin for me.
Hang in there....you are your best Doctor. You know your body better than anayone.