Hi Opirty, I keep having a problem posting replies. I think you are saying that you take the Gabapentin as needed, almost like pain meds…is that right? Does it work that quickly? I know some meds cantake weeks to kick in. I have been taking 1 at night and I think it is helping me sleep. The dr wants me to start w 2x a day and work my way up to 6x. Since Lyrica caused me such constipation, I am really hesitant to take so much of this drug. I am doing pretty well after IVIg, but the back & hip pain & burnng are unbearable, even with Percocet. I so appreciate your advice. Could you confirm that you take it like a pain med, how much you take at one time, if you take it at night, what you take it for (back pain, or burning in hands or whatever), how it helps and if you get any side effects. Sorry I am being so specific it is just that I have Crohns disease also and I am a bit afraid that I will have bowel symptoms as well. Thanks again. Jo
Doggymama said:
opirty said:
Gabapentin 300mg as needed(generic Neurontin) .I have had no adverse effects,Pain is always there,episodle,when it is a problem,take a pill.I have been living w/CIDP since 2003.As b/4,had IVIG ,then Cytoxan chemo. If you have GBS it will go away,if CIDP,it will not.Each case is different,depends on your individual case.
Hi UN, what side effects did you get from the IVIg? After day 5, I had a headache that felt like my head was going to split open and an alien come out! My neck and head still hurt a bit and tomorrow is a week. I do feel like about 80 percent of my numbness & burning have gone away but my back and hip pain are still very bad. I am praying so hard that the positive effects last and that the next treatment will help with back pain. What are you going to try now? How bad are your symptoms? My heart is breaking for you that the IVIg isnt working. Please tell me what you will do next. Do you know about stem cell treatments? Is that something you would consider? Jo
Doggymama said:
uncomfortably numb said:
I am so sorry that this is causing you so much stress. Try to relax a little if you can, I do understand how you feel.
I have had IVIG for close to a year now and will not be taking any more, I suppose. My side effects are just too many and it seems that the benefits are beginning to wane. However, for the benefits that I did get, it seems that it took about five days or so. How many treatments did you take?
Hi Alli, tjat is horrible that IVIg didnt work for you. I have only had the 5 days and had some pretty bad headaches, neck pain and nausea. I am hoping it wont happen again w lower dose treatments. What are you doing now? How bad are your symptoms? Jo
Alli Williams said:
Unfortunately I didn’t experience anything from IVIG. I tried it of five treatments in one week, I tried it every other week, I tried it once a week plus my doc added a IV steroid with it and sadly I didnt experience any benefits from it. Don’t be discouraged though because of my reaction to this treatment, I believe every person is different and how they respond.
I take Gabapentin 600 mg 3 times a day. Mine isn't taken like a pain pill. It is meant to stay in my system to help with the severe tingling, burning, electrical shocks, and other strange nerve pain that I have. I also take Baclofen which is a muscle relaxer to help with the horrible muscle spasms and muscle tightness that I have in my legs. Even with those drugs, I still need medication for pain which is hydrocodone that I take every 4 to 6 hours as needed. The side effects that I seem to suffer from these drugs seems to be dizziness, drowsiness, and being tired. I know that without them, I'd never make it through the day, which is unfortunate, because I hate the idea of taking so many pills. I can sympathize with your pain. I have good days and bad days, but the bad days are VERY BAD. Give the IVIG some time. I've only had 2 months of IVIG, and my third round will be this month. I haven't noticed a difference yet, and I seem to be getting worse. However, the nurse that gives me the IV says that everyone is different, and we all respond at different rates. For some it can be immediate, and others it can take months. My first IVIG made me very nauseous, with a terrible headache and flu like symptoms. My second round wasn't as bad, and we'll see how I do with the third round this month. Also, I thought I'd add that my nurse also said that it can get worse before it gets better. Sometimes the extra pain and feeling lousy during and after treatment can also be a good sign. It can mean that our immune system is booting up to heal our bodies, and all the extra activity in our nervous system can bring about some discomfort for a few days. I hope this helps you a little. :-) I wish I knew more, but I'm very new to CIDP, and have only had symptoms since October 2011.
Thank you so much for writing. I am new to this too and have symptoms since august 2011. It seems like forever doesn’t it? It gives me hope that you got sick with first round and then not as bad. My second round is in 2 weeks and I still have a slight headache, neck pain & feel lousy. I am praying it gets better with time. I’ve had Crohns disease for over 20 years so I am no stranger to pain and feeling bad but this has been terrifying! I hope & pray thay your treatments go well. I am on less meds so I dont know how you are functioning. I hope for better days ahead. Do you have a lot of side effects from the gabapentin? Jo
DaNyA said:
I take Gabapentin 600 mg 3 times a day. Mine isn’t taken like a pain pill. It is meant to stay in my system to help with the severe tingling, burning, electrical shocks, and other strange nerve pain that I have. I also take Baclofen which is a muscle relaxer to help with the horrible muscle spasms and muscle tightness that I have in my legs. Even with those drugs, I still need medication for pain which is hydrocodone that I take every 4 to 6 hours as needed. The side effects that I seem to suffer from these drugs seems to be dizziness, drowsiness, and being tired. I know that without them, I’d never make it through the day, which is unfortunate, because I hate the idea of taking so many pills. I can sympathize with your pain. I have good days and bad days, but the bad days are VERY BAD. Give the IVIG some time. I’ve only had 2 months of IVIG, and my third round will be this month. I haven’t noticed a difference yet, and I seem to be getting worse. However, the nurse that gives me the IV says that everyone is different, and we all respond at different rates. For some it can be immediate, and others it can take months. My first IVIG made me very nauseous, with a terrible headache and flu like symptoms. My second round wasn’t as bad, and we’ll see how I do with the third round this month. Also, I thought I’d add that my nurse also said that it can get worse before it gets better. Sometimes the extra pain and feeling lousy during and after treatment can also be a good sign. It can mean that our immune system is booting up to heal our bodies, and all the extra activity in our nervous system can bring about some discomfort for a few days. I hope this helps you a little. I wish I knew more, but I’m very new to CIDP, and have only had symptoms since October 2011.
I understand about having Crohns disease and being no stranger to pain. My step mother has this disease, and I know how much she hurts and feels bad when she has flare ups. I'm sorry that you are having to deal with both, as if just ONE of these terrible diseases wasn't enough! I have diabetes, and understand what it's like to be tired and fatigued, and just not feel well in general. So for this disease to have taken effect in October 2011 like it did, a whole new world of pain and fatigue was introduced to me VERY QUICKLY! I am thankful that I can still walk, and that I'm still able to work. Although sometimes I need help walking, and working full time is so very difficult! I may consider short term disability to allow myself a little time to adjust to CIDP, all of these medications that I've been placed on, and allow my body to heal somewhat. The Gabapentin seems to make me dizzy. I don't seem to suffer any other side effects from it right now. My doctor has also just added Cymbalta (which I start tonight) so I'll let you know how that goes. Although I do have to tell you, that I'm taking so many medications right now, that I'm not sure what side effects I'm suffering from which drug! I generally just don't feel very good. I'm exhausted all of the time, and the pins and needles / tingling / electrical shocks have gone from just my legs and feet to including the rest of my body. I'd be happy to keep you up to date on my progress / or lack of if you are interested. My next IVIG round starts on Feb 13th. (Here's to hoping it makes a huge difference this time!)
Doggymama said:
Thank you so much for writing. I am new to this too and have symptoms since august 2011. It seems like forever doesn't it? It gives me hope that you got sick with first round and then not as bad. My second round is in 2 weeks and I still have a slight headache, neck pain & feel lousy. I am praying it gets better with time. I've had Crohns disease for over 20 years so I am no stranger to pain and feeling bad but this has been terrifying! I hope & pray thay your treatments go well. I am on less meds so I dont know how you are functioning. I hope for better days ahead. Do you have a lot of side effects from the gabapentin? Jo
DaNyA said:
I take Gabapentin 600 mg 3 times a day. Mine isn't taken like a pain pill. It is meant to stay in my system to help with the severe tingling, burning, electrical shocks, and other strange nerve pain that I have. I also take Baclofen which is a muscle relaxer to help with the horrible muscle spasms and muscle tightness that I have in my legs. Even with those drugs, I still need medication for pain which is hydrocodone that I take every 4 to 6 hours as needed. The side effects that I seem to suffer from these drugs seems to be dizziness, drowsiness, and being tired. I know that without them, I'd never make it through the day, which is unfortunate, because I hate the idea of taking so many pills. I can sympathize with your pain. I have good days and bad days, but the bad days are VERY BAD. Give the IVIG some time. I've only had 2 months of IVIG, and my third round will be this month. I haven't noticed a difference yet, and I seem to be getting worse. However, the nurse that gives me the IV says that everyone is different, and we all respond at different rates. For some it can be immediate, and others it can take months. My first IVIG made me very nauseous, with a terrible headache and flu like symptoms. My second round wasn't as bad, and we'll see how I do with the third round this month. Also, I thought I'd add that my nurse also said that it can get worse before it gets better. Sometimes the extra pain and feeling lousy during and after treatment can also be a good sign. It can mean that our immune system is booting up to heal our bodies, and all the extra activity in our nervous system can bring about some discomfort for a few days. I hope this helps you a little. :-) I wish I knew more, but I'm very new to CIDP, and have only had symptoms since October 2011.
I got severe headaches and stiff neck 2 days after IVIG treatment stopped. We premedicated with benedryl, solumedrol 100mg and 500mg tylenol before each infusion. For headaches I take 100mg (4) benedryl and 75mg indomethicin. This helps but i have the severe headaches for 10 days after treatment. If left untreated the headaches paralyze me from neck down. I couldn't feed myself, arms and legs extremely weak and unable to sit up, but as soon as the headache was under control I was able to move again. Needless to say I don't tolerate the IVIG very well. Hope this helps.. Rachel
Doggymama said:
Thank you so much friends. You have renewed my hope that the treatments will improve. When I was diagnosed last month, I was walking with a cane and could barele use my right arm & hand. I am still using the cane for balance. I feel like I have made arounda 30 percent improvement so far but am hoping for 100. I did well with the treatments, until day five. That is when the unbearable headache, neck pain, nausea & vomitting hit. It lasted about two days. Has anyone else had these side effects and if so, what did you do? Jo
Rduchess, oh God, I’m so sorry the IVIg hits you so bad. The day after my 5th treatment, the headache was literally blinding. It got better but I have had a headache of varying intensity for the two weeks after treatment. I am getting it for 2 days next week so I guess I will see what happens then. If it’s still bad, I will have to get some pre-treatment meds. Thanks for your response and I pray thay you feel well. Jo
My doctor and nurse have cautioned me about this and have a recommendation. A couple of hours prior to each IV I hydrate as much as possible. I might drink as much as 4- 16oz glasses of water during that time. My neurologist said that the IVIG dehydrates. I will usually drink extra water throughout the day as well. It means a trip or two to the bathroom while getting the IV but it beats the pain! And, I avoid foods (salty chips, chocolate, caffeine) and drinks (alcohol and coffee) that might dry me out. mike
everyone is different, there is no solid answer to this. IVIG helps overall, but it does not return you to "normal". the rate of infusion can affect your headaches, and sometimes just the presence of IVIG causes aseptic meningitis. There are treatments they can do for this (sterioids IV, or a short course of decadron the day before, during and after your infusion). I was on the decadron for the first couple of years of infusions and now don't need it at all.
It took me a year of IVIG to recover from each of my paralyses. Since then it has barely maintained me. I go every 4 weeks. I was paralyzed each arm/hand for a year each, end to end. Since IVIG, no paralysis, but weakness and difficulty with motor skills.
No, unfortunately, IVIG does not make you better and better. It may help for a while, but after 7 or so years, it doesn't seem to make as much of a difference. Ask if you have any more questions.
Hi Jenny, I guess I have my answer from the other page…about why you are trying plasmapheresis. I guessvIVIg is no longer helping. I am encouraged that it seemed to keep helping you for a year or so. I try not to look ahead as far as 7 years or even one year. My hope is that the trial results coming out in 2014 for stem cell replacement will be positive and will then be covered by insurance. Does your dr have an opinion as to stem cell use in CIDP? I also have Crohns disease so I pray that stem cell tranaplant will cure me of both autoimmune illnesses.
I also find hydrating helps. I didn’t know to do this for my first IVIG session and had the blinding headaches, I can minimize with the hydration technique. I have found the IVig temporarily increases my blood pressure some 30 to 50% and this can also give me headaches. I have had 6 IVIG sessions now and have seen gradual improvement with each session. Stick in there kx
JMichaelS said:
Jo and others who get headaches with IVIG,
My doctor and nurse have cautioned me about this and have a recommendation. A couple of hours prior to each IV I hydrate as much as possible. I might drink as much as 4- 16oz glasses of water during that time. My neurologist said that the IVIG dehydrates. I will usually drink extra water throughout the day as well. It means a trip or two to the bathroom while getting the IV but it beats the pain! And, I avoid foods (salty chips, chocolate, caffeine) and drinks (alcohol and coffee) that might dry me out. mike
I wish I knew more, but I’m very new to CIDP, and have only had symptoms since October 2011.