What Is The Best To Take For Pain From Cidp

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Tom Says:


What is the best pain medication for C I D P (Chronic inflammatory demyelinating polyneuropathy)? I'm taking opana 40 mg twice a day it does not work very well for me I'm still in bad pain. Sometimes I feel my pain management doctor does not believe me when I tell him I am still having bad pain and the medication not working. I'm not addicted to the medication. I truly wish I did not have to take pain meds I was in great shape befor my illness C I D P. thank you for any input. Tom



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Brothers Boy Says:

TOM,
My wife has had CIDP for two and a half years. She has settled into a regime of 5 mg pills of the serious pain killer , Mthedone taken three or four times a day begining at 4PM or so. She also takes Lyrica (50mg) twice a day, Cymbalta (two pills at bedtime) and Magnesium four times a day.
Remember what isgood for the goose may not be good for the gander.
While I would say that for the most part she is free from pain during he day, she had pain every day for the whole 2 and a 1/2 years every day.She has also been active in doing some physical work or gym or therapy over long periods in this period.
We, just recently, once again whet to the "Pain doctor". I am afraid that I do not have much faith in them though they mean well but have that arrogance that seems to surround the medical pill pushing professional.I am also afraid I suffer from the same defects.
There are three organizations that have some value in helping distribute info. CIDP org who are most concerned with the disease but seem rather disorganized; the Neropothy assocaition that are politically active and keep their eye on the big picture that accompanies the word Neuropathy and finally the Mylin Repair group. It is this later group that I believe holds the most hope just because they are in the bowls of the problem.
Pain seems to be caused because the mylin is being attacked by the CIDP and yet we need the mylin repaired which process may itself be causing pain.
My wife has never had Opana prescribed. She has had the infusions several times and I believe they may have helped stop the progress of the disease.
I am not a doctor so I do not probably attack the logic of the pain management correctly and I am not sure there is a true logic out there. I am a computer person and believe that at each stage of the disease and the progress in the field there is a best tactic. I even believe a computer program could be written that would suggest protocals that would be best for different people at a stage in their disease given their length with the disease, what they have already done, the nature of the pain and their sex, age and symptoms. If a data base was collected on success and failures of pain management for CIDP, over the years, the recommendations would get better and better.
I don’t know if I have helped you any but will close with two other suggestions. Pray every day that God helps you accept your pain and work every day to find a new approach that He has ready for you.

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2
Verwon Says:

TOM is correct, what's good and works for one person will not necessarily be good and effective for another, because everyone is different.

If your doctor isn't helping, you may want to try a different doctor, perhaps someone that specializes in pain management.

There is a time released Oxycodone in the market, under the brand name Oxycontin, which might help you more:

https:/­/­www.medschat.com/­wiki/­Oxycontin/­

There is also a time released patch, that contains the active ingredient Fentanyl, which is used to treat severe, chronic pain:

https:/­/­www.medschat.com/­wiki/­Fentanyl/­

They are both narcotics, so they may cause side effects, such as: nausea, dizziness, dry mouth and constipation.

Are there any other suggestions?

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Lawrence Says:

I have been fighting the pain from cidp for about three years now. They have me on ivig every three weeks and it has effectively stopped the progress and somewhat improved the past damage. The one thing it hasn't done is relieve the pain. It starts with my shoes seemingly shrinking by two sizes and then the sharp stabs begin. The pain med doc has me taking one Nucynta ER 200mg every eight hours along with one Percocet 325 and one 300mg Gabapentin at the same intervals. On most days this works well but it took me about three months to acclimate to the high dosages and be able to function. It still has its ups and downs and you can't miss the timing by more than 30 to 45 minutes or it takes a couple days to recover. Along with the pills you can expect to be even more exhausted but at least I can still work and enjoy most things. No marathons anytime soon. Good luck.

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Roy Says:

Hi Lawrence, thank you for your feedback and I hope that you are finding relief from your current treatments. For those passing through who are not familiar with CIDP, here is some reference data from the NIH:

What is Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)?

Chronic inflammatory demyelinating polyneuropathy (CIDP) is a neurological disorder characterized by progressive weakness and impaired sensory function in the legs and arms. The disorder, which is sometimes called chronic relapsing polyneuropathy, is caused by damage to the myelin sheath (the fatty covering that wraps around and protects nerve fibers) of the peripheral nerves. Although it can occur at any age and in both genders, CIDP is more common in young adults, and in men more so than women. It often presents with symptoms that include tingling or numbness (beginning in the toes and fingers), weakness of the arms and legs, loss of deep tendon reflexes (areflexia), fatigue, and abnormal sensations. CIDP is closely related to Guillain-Barre syndrome and it is considered the chronic counterpart of that acute disease.

Is there any treatment?

Treatment for CIDP includes corticosteroids such as prednisone, which may be prescribed alone or in combination with immunosuppressant drugs. Plasmapheresis (plasma exchange) and intravenous immunoglobulin (IVIg) therapy are effective. IVIg may be used even as a first-line therapy. Physiotherapy may improve muscle strength, function and mobility, and minimize the shrinkage of muscles and tendons and distortions of the joints.

Source: http:/­/­www.ninds.nih.gov/­disorders/­cidp/­cidp.htm

There is also an interesting powerpoint presentation available about medical cannabis with specific mention about studies on the pain relieving properties of it. It starts off with lots of details about legislation and legal status, but by slide 31 it starts to get interesting:

Neuropathic Pain Studies

Results have been convergent.

Five studies demonstrated a significant decrease in pain after cannabis administration
the magnitude of effect in these studies, expressed as the number of patients needed to treat to produce one positive outcome, was comparable to current therapies.

Source: http:/­/­www.ucdmc.ucdavis.edu/­chpr/­seminars/­presentations/­wilsey.ppt

Hope this helps and best wishes to all!

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Wildcard Says:

Hi All, Having CIDP now for nearly two years I can relate to the ongoing daily pain, especially from early afternoon onwards. I am looking for some type of relief as I am on slow release oxycontin 40mg twice daily and 1200mg of gabapentin with top up oxycondone 5mg when needed. With daily pain I have thought about suicide, but with a young family this is not going to happen. Does anyone know of a patch either 12 or 24 hour that can stop this burning/skin tearing pain in feet, legs, arms and hands?

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Roy Says:

@Wildcard - sorry to hear about your challenges. I don't know if this is ever used in treating CIDP, but have you ever talked to your doctor about Fentanyl (Hydromorphone)? It's very strong and comes in patches. If so, please let me know what they say. I'm wondering if it might have use in your situation...

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Pieteer from South Africa Says:
via mobile

I am a male;69;suffer from CIDP past six years plse suggest medication that wont harm kidneys. Currently using Austell & Tramadol. Medical aid does not pay for pain killers! Seeking alternative.

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Stephen Says:
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Brothers Boy - do you know whether the software idea you mention has been taken up anywhere? I'd be interested as a software developer to take a closer look if I can manage the time.

Tom I agree with the general thrust of replies here. I've had CIDP for 18 years. Been to hell and back really but I lead a productive if somewhat uncomfortable life despite initial quadriplegic response, pain at all. The best thing you can do is undertake a pain management program. Depends where you live as to cost and availability. I live in Australia which has an excellent public Medicare system. I understand that it's complicated in USA. Regardless pain treatment choices are very tricky really for doctors and patients alike. In my experience there several strategies you need to consider and not in isolation and not exclusively. Again what works for one will not work for another. Narcotics get a bad rap for lots of reasons. But the bottom line is that they are very useful if well managed. I despair the profane use of the word addiction with these meds because although addiction is a possibility as a patient your volition will be noble. You will develop tolerance and require increased dosing but this can be managed by rotation and a smart GP informed by a pain management team or specialist. You need to have an open and trust based relationship with your GP. The anti epileptic type of drugs work in about 50% of patients according to a close friend who is a pharmacist. I've rotated through a half dozen or so of these multiple times to no effect. So they don't work for me where opiates do. Anti depressants can also work very well but side effects were too much for me. Pain management is difficult and needs to involve more than drugs though so exercise and diet should be looked at as well as sleep (crazy bad in my case). I use stretching ( yoga like) to great benefit. I do it daily for 20 minutes and again when I think I need more relief. I've been able to manage opiate dosing down (but not out) as a result. Not sure what to say about diet except be sensible and maybe see a dietician. Work can be problematic in pain management. I found it hard to accept that i couldn't work as much or as hard or as long and what do you mean I can't do a second contract? Stay home as much as you can and spend time with family. One of the posts alluded to some drugs - I think they meant cortisone - having baggage long term. I've been on IVIg for 15 years - subcutaneous for last two. I also take myfortic and Prednisolone. I now have secondary adrenal insufficiency due long term steroid use and excessive plaque in most arteries of heart. Sitting in hospital at the moment to find out whether i have stents or bypass. There are other mitigating factors, one self inflicted (I smoked when I was young - I'm 62) but steroids have aged me internally. But as confronting as that is I am grateful for the good they have done. My original prognosis was never to walk again and I think cortisone was the platform that changed that in my case. Cortisone can also impact liver and kidneys longterm. But I trust my doctors to monitor and balance things as time goes by. Back to pain management then. Don't expect anything to happen quickly. Be kind to yourself and the world around you. Have hobbies. I took up singing - wow! What difference that made. Taking up piano now as well and hoping my legs can strengthen enough for a desert hike in the middle of Australia with a mate and a mountain walk in my home country (Canada). I just might retire from teaching. So find and do things that make you happy. Did I say Tea? Coffee? Read a book? Music? They all produce natural feel good chemicals in the way stretching does. Moderation and pacing are important. Sorry about the ramble so last word: find the strategy that works for you and wear sunglasses because despite having CIDP your future is bright :)

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billie Says:
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I have suffered with cidp for the past 5 years, I take lyrica 200mg 3x a day, opana 15mg 2x a day, and vicodin 5mg 4x a day, I wish the pain would stop, this is such a sad disease

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C Says:
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Hi, I've had c.I.d.p for 3 years. I'm 48, male, non smoker and not overweight. I am an outpatient of Toronto general. They have me on a two course treatment. 4500 mg gabapentin a day, and I.v.I.g. subcutaneous 2 days a week 95mg a day to stop the progression of disease as well as 12 mg hydromorphone daily, 300mg nabilone daily, 60 mg of cymbalta daily, and 50mg fentanyl patch 48 hour release. Its a lot to manage but has brought me to 8 hrs pain free during day and sleeping 8 hours a night. I'm walking no cane or assistance, can keep up with my 10 yr old and feel some sense of life. I've been on this regime 1 yr and I have strength back about 80%. I agree everyone is different and side effects play a huge role individually. Good luck, my best advise is keep asking questions, keep telling the Dr exactly how you feel and ask for referrals to pain specialists & neurologists until you are happy with the care.

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Kathy Says:

Are you really on IVIG two days of each week? In my 11th year with CIDP, I an being infused every 3 weeks. Have never heard of the frequency you receive IVIG.

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Tommy Says:

My husband has CIDP for about 3 yrs now and is receiving an IVIG treatment every week, low dosages). He takes Lyrica and Cymbalta. He was on Cymbalta and 3200 mg of Gabapentin. They decided the gabapentin was not working enough considering the dosage. He took 12 weeks of IV prednisone, but it did not help. He does take 7.5/325 Norco. But the Drs do not want him on narcotics. In the long run they will cause nerve pain. I have heard about The Cleveland Pain Clinic, they use Bio feedback and other methods. My husband has never done drugs, but he was willing to try anything. He did try some marijuana and it was incredible how it helped his pain. Unfortunately it is quite expensive, and he does not think this is a solution to the problem, just a bandaid.

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13
Joey Says:

Re: Stephen (# 8)

Thank you, Stephen, for your thoughtful and generous post. You´ve really got the Spirit! From someone who has never written on this forum before, who came to it from a sense of helplessness, and leaves a little bit more hopeful.

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Diane Says:
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Re: Pieteer from South Africa (# 7)

Have had CIDP for almost 3 yrs. Find no relief from Tramadol. Government won't allow for more mil. If legal you need to get medical marijuana, doing well in the states, but not legal in state where I live. Want to more where legal. Good luck, may God bless you

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Diane Says:
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Re: Tommy (# 12)

Again, depending where you live, if you can get medical marijuana, try liquid marihuana. Reports are great results

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JUTTY Says:

I have been dealing with this horrible condition since August 2015. I am in so much pain. I wish there was something for my pain relief. I take 4000 mg gabapentin daily oxy as needed prednisone 20 mg a week. I have the tense units sometimes they do work for a while. As anyone tried tramadol for nerve pain reliever. You are all in my prayers.

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marin5 Says:
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Re: Brothers Boy (# 1)

what is CIPD? I don't know what else to say because I'd like to know what is being discussed???

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18
JUTTY Says:

I have come to the conclusion that nothing stops CIDP pain. This condition has path of its own. You never know when the immune system is going to attack the Mylan sheath. All we can hope for is a true cure or pain we can tolerate. My prayers to all of you with hopes that your days get better.

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