Disease or medications

My hubby has CIDP and is in bed most of the time. He takes Gabapentin & Methadone for nerve pain along with meds for anxiety. Occassionally he gets chills with excessive sweating and dry heaves but with no fever. This can last for a few hours to the entire day. Not sure if it is a medication reaction or part of the disease. Anyone having these symptoms?

Hi Lisa,

I have not had any of the symptoms you described I believe it's the methadone that is known to cause those symptoms you described. Is your husband on any medication that treats the CIDP as opposed to the symptoms. My opinion is that if you treat the disorder directly it will alleviate the pain that is associated with CIDP.

Kindest Regards

Lou

Hi Lisa,

With all due respect to Lou, I've always had levels of pain with CIDP. There is 'muscle burn' and an arthritic effect that can bring tears down your face. Both pain and fatique are very common symptoms of CIDP. Gabapentin helps some with the fasiculations (sp), or twitching of the muscles, but doesn't seem to effect pain so much. I'm not familiar with taking methadone for pain, however, I do take a prescription pain medication. Although I'm not happy with taking it, I take it as needed. My neurologist eluded that I should be taking more at times. If you google up CIDP and check out Wikipedia's page, you'll get an over view that mentions both the pain and fatigue are common characteristics of CIDP. The thing is, gabapentin is not an actual CIDP treatment. Treatment for CIDP involves the immune system. On the same Wikipedia page, you'll see the forms of treatment along with the protocol for diagnosis and treatment. I am not familiar with using methadone as a treatment for pain associated with CIDP. If Gabapentin is the only actual treatment being given, I'd suggest getting a second opinion. I would also get a second opinion on the methadone too. But again, we are all a bit different and respond differently.

Is he taking an antacid with methadone...like purple pill stuff..that otc but if it does not work than ask his dr to prescribe either stronger one...or anti nausea. But even the otc should relieve the nausea and dry heaves.

If you ever has surgery and are on pain drip..the nurse brings you pill to take when they first explain the pain drip and how it works..that is anti acid pill. Before they gave that i always puked or had dry heaves....now i never do so it works! Plus same for me at home...my stomach is just messed up from years of prescribed motrin at high doses..i still think it was best pain medicine but side effects..well i could not even get Tylenol down with out anti acid pill at prescription strength.

So i hope this helps..i have take both of your mentioned drugs...and neither made me sick once i had the anti acid pills...plus he should eat a bit before taking. IF still has it, i am on pain patch which i love. You only have to remember to put in on ...so just calendar days you put in on ..or write on patch date. You cannot take too many pills ..to not enough. so much easier this way. Plus i never got sick on it..like i do on pills. i hope he is feeling better soon..or this suggestion helps.

I have had all of those. BUT, I just went to my diagnosing neur from 2 years ago. He now says I don't have CIDP. 23 months of IVIG. 10 months of cellcept. 18 months of Kaiser denying me seeing the doctor that diagnosed me.

but all of your husband's symptoms I have had. ice chips; nyquill; and blankets. feet elevated. I have NOT had the sweats though.

What kind of pain patch do you have? I am currently taking vicodin and I have an appointment with my neurologist next month to discuss other options. Thank you

siskiyousis said:

Is he taking an antacid with methadone...like purple pill stuff..that otc but if it does not work than ask his dr to prescribe either stronger one...or anti nausea. But even the otc should relieve the nausea and dry heaves.

If you ever has surgery and are on pain drip..the nurse brings you pill to take when they first explain the pain drip and how it works..that is anti acid pill. Before they gave that i always puked or had dry heaves....now i never do so it works! Plus same for me at home...my stomach is just messed up from years of prescribed motrin at high doses..i still think it was best pain medicine but side effects..well i could not even get Tylenol down with out anti acid pill at prescription strength.

So i hope this helps..i have take both of your mentioned drugs...and neither made me sick once i had the anti acid pills...plus he should eat a bit before taking. IF still has it, i am on pain patch which i love. You only have to remember to put in on ...so just calendar days you put in on ..or write on patch date. You cannot take too many pills ..to not enough. so much easier this way. Plus i never got sick on it..like i do on pills. i hope he is feeling better soon..or this suggestion helps.

Methadone is an extremely potent pain killer that also will silently kill you without warning. The Seattle Times did a national award winning article on the danger of methadone use in patients on low income. Medicaide in WA aka DSHS is pushing methadone over Oxycodone because it saves the state money. The end result was a 10x increase in death by accidental overdose among state supplimented clients. If you would like a link to the full complete article, please write me at
■■■■■■■■■■■■■■■■■■■■■■■

Bob Shannon GBS survivor
Editor Pacific NW News Service
National Press Photographers Association

Lisa,

I agree that your Hubby's symptom's sound a bit like a methadone reaction. I'm on IVIG every 4 weeks to treat the CIDP directly, and I'm on Lyrica & Oxycontin for the nerve pain. Personally, the gabapentin didn't help me as much as the Lyrica does, but everyone is different. It's taken me over 13 years and four different Nueros to finally get "Lewis-Sumner Variant CIDP", but more importantly, to finally get the IVIG treatment and the first relief since 1999. If all they are doing for him is treating the pain and not the problem, he will continue to get worse. If IVIG doesn't work, find something that does. If the Nuero won't help, fire the Nuero. Go to the Patient Advocate, kick start your hubby's case. Squeaky wheel gets the grease!

Best of Luck!

David Q

Absolutely agree w/Big Daddy.

Probably Lidoderm patch. Helps the pain right near the surface of the skin, I use them on my back & upper legs, but it doesn't help the deep nerve or phantom pain, Lyrica or Gabapentin usually helps for that.

nancy said:

What kind of pain patch do you have? I am currently taking vicodin and I have an appointment with my neurologist next month to discuss other options. Thank you

siskiyousis said:

Is he taking an antacid with methadone...like purple pill stuff..that otc but if it does not work than ask his dr to prescribe either stronger one...or anti nausea. But even the otc should relieve the nausea and dry heaves.

If you ever has surgery and are on pain drip..the nurse brings you pill to take when they first explain the pain drip and how it works..that is anti acid pill. Before they gave that i always puked or had dry heaves....now i never do so it works! Plus same for me at home...my stomach is just messed up from years of prescribed motrin at high doses..i still think it was best pain medicine but side effects..well i could not even get Tylenol down with out anti acid pill at prescription strength.

So i hope this helps..i have take both of your mentioned drugs...and neither made me sick once i had the anti acid pills...plus he should eat a bit before taking. IF still has it, i am on pain patch which i love. You only have to remember to put in on ...so just calendar days you put in on ..or write on patch date. You cannot take too many pills ..to not enough. so much easier this way. Plus i never got sick on it..like i do on pills. i hope he is feeling better soon..or this suggestion helps.

Not to be rude but I have a question, has your husband had issues with other pain killers, over the counter or street? My Mother in law was prescribed methadone after building high tolerances to most prescribed pain killers used for a severe back issue. After a short time she was able to return to the “traditional” pain killers.

My wife has CIDP and is on Gabapentin and Baclafin as well as a patch for pain. But for the CIDP she gets IVIG (Gamunex C) and 20 mg prednisone. Seems to help some. Also found that therapy during "remission periods" helps her get out of bed and to the restroom or kitchen without a walker or wheelchair. Also she has 10 mg Norco for breakout pain. We have been at his for some time and have never heard of Methadone as a “treatment”, perhaps there are underlying opiate tolerances or abuse not mentioned, just a thought.

I hope you can get to a Neuro with some experience with CIDP, even now a days we have ran across a few who don’t even recognize it as an actual aliment, or is diagnosed as something else like MS, chronic fatigue, diabetic neuropathy or fibromyalgia. As one spouse to another just hang in there, study CIPD and ask questions after question, as it stands now I know more about CIPD that our regular family Doctor.

The reason I am writing so late, about 2 AM, is that my wife is having some pain and twitching that wont let her sleep. GOOD LUCK everyone


Thank you all for your suggestions and support. Pretty sure it is the methadone; he takes 160mg a day (he is a BIG guy). We aked the Pain Mgt. Doctor about taking an antacid, but he does not want hubby taking any more meds. I think we will try it anyway. He often takes it on an empty stomach; despite what every doctor tells him. Hubby has been through patches, nerve blocks, Oxycodone and Neurotin and everything in between; but the Methadone and Gabapentin work best and longest at subduing the nerve pain.

He is also currently fighting an infection which has reached the tip bone of his 3rd toe on his left foot. (His left foot is breaking down; arch collapsed, attrophy, and pressure ulcers). He was on IV antibiotics for 3 weeks and now on oral antibiotic for 10 days. The Xray also revealed that he has broken all of his toes on the left foot which he never knew, due to loss of feeling. He will have to have the tip bone removed to be sure the infection is gone. The Podiatrist also told us that the time has come for hubby to get electric scooter, as he will only be allowed to stand or walk 15-20 mins per day due to the problems with the foot.

We will be seeing our newest Neuro in 3 weeks and I am anxious to discuss treatments for the CIDP. He tried a 5 day plasmapheresis blast a year ago January which seemed to help for a few short weeks. I thank you for sharing some of your treatments and the pros and cons of them. I know how individualistic this disease is so the more info the better!

Lisa



Shelley66 said:

Not to be rude but I have a question, has your husband had issues with other pain killers, over the counter or street? My Mother in law was prescribed methadone after building high tolerances to most prescribed pain killers used for a severe back issue. After a short time she was able to return to the “traditional” pain killers.

My wife has CIDP and is on Gabapentin and Baclafin as well as a patch for pain. But for the CIDP she gets IVIG (Gamunex C) and 20 mg prednisone. Seems to help some. Also found that therapy during "remission periods" helps her get out of bed and to the restroom or kitchen without a walker or wheelchair. Also she has 10 mg Norco for breakout pain. We have been at his for some time and have never heard of Methadone as a “treatment”, perhaps there are underlying opiate tolerances or abuse not mentioned, just a thought.

I hope you can get to a Neuro with some experience with CIDP, even now a days we have ran across a few who don’t even recognize it as an actual aliment, or is diagnosed as something else like MS, chronic fatigue, diabetic neuropathy or fibromyalgia. As one spouse to another just hang in there, study CIPD and ask questions after question, as it stands now I know more about CIPD that our regular family Doctor.

The reason I am writing so late, about 2 AM, is that my wife is having some pain and twitching that wont let her sleep. GOOD LUCK everyone

My doctor has said I will probably build up a tolerance to the Vicodin and will need something stronger as well as using steroid therapy with the IVIG. I am holding off on the steroids the side effects concern me. I do believe it is essential to keep using and stretching your muscles. I find that my energy level increases a few days after the infusions, I try to take advantage of those times. The pain and twitching has also been keeping me up the last few nights. Keeping my leg elevated and believe it or not a warm rice bag on my leg seems to help a little. Is your wife keeping herself hydrated with water, I am told over and over again to drink copious amounts of water. Stay Strong.

what a great post, thanks for sharing!

Wow your husband sounds seriously ill with symptoms that are not the usual CIDP syptoms as far as I am aware. Surely he should also be on IVIG or cortisone as well for the CIDP? Is this the case? I think it is unusual to have such severe nerve pain that methadone is required. The side effects of methadone can be quite serious and it sounds like the IVIG (if he is on it) is not doing the trick and a higher or more frequent dose may be required.

Regards and all the best
Glen



Glen Merryweather said:

Wow your husband sounds seriously ill with symptoms that are not the usual CIDP syptoms as far as I am aware. Surely he should also be on IVIG or cortisone as well for the CIDP? Is this the case? I think it is unusual to have such severe nerve pain that methadone is required. The side effects of methadone can be quite serious and it sounds like the IVIG (if he is on it) is not doing the trick and a higher or more frequent dose may be required.

Regards and all the best
Glen

Glen,

There are different variants to CIDP, so it's often difficult to say something is or isn't related to CIDP. I have Lewis-Sumner Variant CIDP, and the nerve pain CAN be debilitating. That being said, IVIG has done more than the Oxycontin for relieving/helping the nerve pain.

TO Lisa: My wife is a Drug & Alcohol counselor, and she feels your husband is having a reaction to the Methadone. One of the cases where the treatment is worse than the disease. Either that, or your Hubby is sneaking alcohol while on the methadone (a SEVERE NO-NO) which I have a feeling is NOT the case. I still think your best bet is to talk to the Neuro about getting a 2nd/3rd/4th opinion and talking to a Patient Advocate.

Wish you & your Hubby the Best,

David Q

Glen Merryweather said:

Wow your husband sounds seriously ill with symptoms that are not the usual CIDP syptoms as far as I am aware. Surely he should also be on IVIG or cortisone as well for the CIDP? Is this the case? I think it is unusual to have such severe nerve pain that methadone is required. The side effects of methadone can be quite serious and it sounds like the IVIG (if he is on it) is not doing the trick and a higher or more frequent dose may be required.