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Susanne C. 05-08-2012 05:59 PM

Allergic reaction to different lab's generic neurontin?
 
For the past two weeks I have been suffering from a sudden escalation in my symptoms. I usually have pain in my legs and feet, also hands and arms, muscle weakness, extensive numbness, difficulty in going up steps, etc. all very manageable and predictable. Lately though, I have full body burning symptoms, as if I were badly sunburned. Sitting, lying down, most clothing, anything in contact with my skin hurts like crazy. My oxycodone barely touches it. I was beginning to think that ths was the new normal. It is definitely a nerve type of pain and gets worse as the day goes on. My quality of life has deteriorated severely.
I went to the doctor to report the symptoms and ask for an increase in my pain meds. When I mentioned that the sunburned feeling dates from a change in the manufacturer of my gabapentin, my doctor said that could easily be the cause- an allergic reaction to something in the new meds, as apart from the active ingredient, the compounds could be very different and contain something which set off this reaction.
He insisted that I refill immediately at the old pharmacy with the previous brand. I am really hopeful that it is this simple, but the pharmacist seemed skeptical. My doctor seemed very convinced, however.

Has anyone had an experience like this? Mrs. D., is this even possible?

mrsD 05-08-2012 06:13 PM

You can ask the pharmacy for an insert, and all inert ingredients will appear on it.

Then you can get one from the type you previously used, and compare them.

I really don't think inert ingredients are commonly causitive of issues.
But coatings, dyes might be. Povidione, is in some pills and some people are allergic to it.(organic iodine).

Gabapentin can cause allergic reactions all by itself. And different generics may be absorbed at a slightly different rate, and you have a rebound or breakthru, if one is slower than the other. Gabapentin has poor absorption in the first place.

So there may be several variables.

People do react differently to generics. I cannot take Lupin lisinopril...it makes me very dizzy. But Watson brand, is okay. Only slight dizziness. I think it has to due with the rate of absorption over time. I have Kroger's special order Watson brand for me, and they roll their eyes, but they do it. WalMart had the Lupin brand years ago and I transferred to Kroger because of it, and now ALL of them have Lupin!

Susanne C. 05-08-2012 06:48 PM

They are both white, so no difference there, but the one is shiny, the other matte, so definitely a difference there.
I did just notice that there is a side effect warning on the oxycodone about burning, and feelings of warmth. This is not an overall flushing or warmth, I am usually quite cold, it is a localized sense of sunburned or burned skin, and sensitivity to clothing or pressure. Could it be the oxycodone? I have taken it at low dosages for years without side effects, but have doubled my usage in response to this problem, to 3 5 mg pills per day.
Would it be worthwhile to taper off the gabapentin altogether (i know that is a gradual process ) and discontinue the pain pills to eliminate them as possibilities? I am in so much discomfort even with them I am willing to try anything.

idiopathic 05-08-2012 08:37 PM

I have been taking 800-1600 mg's of gabapentin a day for neuropathy in hands and feet and described my doctor as idiopathic(no known reason). My symptoms too are worsening and it is my theory that my b12 is not absorbing resulting in low b12 values. b12 deficiency especially if other family members have had b12 deficiency can cause neuropathy. I was not aware of this but am in the process of research. Good luck.

mrsD 05-09-2012 12:13 AM

Oxycodone has a vague effect in some people of releasing serotonin. This leads to itching skin, and flushing for some.
http://www.ehow.com/how-does_5481160...head-itch.html

It is difficult to say. But gabapentin itself causes some skin reactions.

Try taking an antihistamine like Benadryl. If it helps, then
an allergic histamine reaction is happening.

I always suspect the drugs.:rolleyes:


Quote:

Originally Posted by Susanne C. (Post 877563)
They are both white, so no difference there, but the one is shiny, the other matte, so definitely a difference there.
I did just notice that there is a side effect warning on the oxycodone about burning, and feelings of warmth. This is not an overall flushing or warmth, I am usually quite cold, it is a localized sense of sunburned or burned skin, and sensitivity to clothing or pressure. Could it be the oxycodone? I have taken it at low dosages for years without side effects, but have doubled my usage in response to this problem, to 3 5 mg pills per day.
Would it be worthwhile to taper off the gabapentin altogether (i know that is a gradual process ) and discontinue the pain pills to eliminate them as possibilities? I am in so much discomfort even with them I am willing to try anything.


mrsD 05-09-2012 03:06 AM

Also you will want to look at your diet.

Specifically MSG, and histamine releasing foods or histamine in foods. Here is a list for both:

http://www.michiganallergy.com/food_and_histamine.shtml

The nightshade family of veggies:

Potatoes have solanine in them.
http://www.michaellebowitzdc.com/html/Solanine.html

http://chronicfatigue.about.com/b/20...e-syndrome.htm

I do think doing an elimination for nightshades may be helpful.
This link is very good and explains further:
http://www.earthmedicine.com/common-...u-pain-disease

and:
http://sweetrocket.blogspot.com/2009...-and-pain.html

It took me almost a whole lifetime to connect potatoes to my burning attacks. Peppers also.

Susanne C. 05-09-2012 06:00 AM

Thank you so much for your responses!
I tried the Benadryl when you first suggested it. It certainly allowed me to sleep better, but I am not sure it lessened my symptoms. I am going to give it a daytime trial for a few days when I do not have to teach, it knocks me out.
If the drugs are implicated, I agree that it is more likely to be the gabapentin. I have heard of people developing intolerances to medication after several years. I have been on 1800 mg for nearly 3 years. I think it would be worthwhile to see what happens without it, but I will wait until I have fewer obligations to try that.
I do take B-12, and fish oil. I had started with vitamin D but stopped when these symptoms started just in case it was part of the problem.
Since I have CMT, most supplements aren't going to make any difference, and it does progress, so this body-wide burning could just be the new normal. It just seems like it shouldn't be so sudden, and I am not sure that the doctor believed how life changing this symptom has been. I cannot get comfortable at all.

Again, this is very confusing and difficult to deal with and I appreciate both of you immensely.

bent98 05-09-2012 01:52 PM

If your taking opiods like oxycodine you can develop allodyina which is the sunburn your feeling. Its quite common. It may not be the gabapentin.

http://www.painphysicianjournal.com/...14;145-161.pdf

mrsD 05-09-2012 02:01 PM

That is a very interesting article.

It seems similar to MOH, medication overuse headache, which is also a chronic pain condition.

Susanne C. 05-09-2012 02:53 PM

Thank you for that article. I had begun to question whether the oxycodone was part of the problem, I had increased my use in response to my usual worsening of leg pains during my period, which then turned into this problem. I did not think that my current usage of 7.5 mg twice per day which has only been in the past two weeks could be enough. The article seems to be primarily implicating larger dosages, but does hint at possibilities of smaller doses creating a problem.
I am going to experiment with taking Benadryl and not taking the oxycodone for 4-5 days. I have very little that must be done this weekend. Normally I rely on the oxycodone when I have to get things done, ride in the car, go to church, laundry, shopping, etc. but my usage is not such that I experience withdrawl symptoms, I have not been a heavy or consistent user, so I only anticipate an energy drop and increase in muscle pain due to the CMT which it does help with. Steps are the very devil without it!
It has not helped much, if at all with the sunburned feeling.
I did notice that the article recommended butrans as a substitute for opiates. My doctor had wanted me to try this before, and I preferred to stay as I was with the as needed oxycodone rather than a 24/7 patch. I may need to re-think this.
If it is the oxycodone causing the burning, should I know within 4 days?
Thank you again.

mrsD 05-09-2012 03:38 PM

I should hope you see some change within 4 days... but I don't know if that is enough.

You know that article discusses the NMDA pain receptors, and using a NMDA blocker to help. Magnesium does this.
http://en.wikipedia.org/wiki/NMDA_receptor_antagonist
most of the list is impractical for most people, but the DM and memantine (Namenda) are available and also the magnesium, of course.

And MSG....does the opposite...stimulates the NMDA receptor.

Are you using magnesium at all? It might help, if your problem is what the article describes.

Susanne C. 05-09-2012 04:05 PM

I have the magnesium, have not been using it regularly. Will be more diligent. Does that mean that magnesium may neutralize this particular effect, allowing me to take the oxycodone, assuming the oxycodone was found to be the culprit?

That article and related ones seem to address a much higher usage than mine. Is it even possible that this is my problem? I am not too hopeful, but it is an easy fix, the burning is much worse than the muscle pain, stiffness and weakness.

Also, while I understand that one should only change one variable at a time to gain any real knowledge, I am in such distracting discomfort that I want to do everything at once to see a change as soon as possible. I can always re-introduce things slowly.

This body- wide burning can, evidently, also simply be a symptom of small fiber neuropathy. My skin biopsy did show fibers breaking down at the upper thigh. Since it works in a mirror image fashion, I assume the burning in my shoulders and upper arms is analogous to my hips and thighs, just as the muscle wastage in my feet and ankles is mirrored in my hands and wrists.

Thank you Mrs. D.!

Kitt 05-09-2012 04:57 PM

Susanne C. perhaps the burning is due to CMT. (or partly). Some people (CMTers) experience severe neuropathic pain and require medication to control it. Just a thought. Perhaps it depends on the type of CMT as well. I hope I never have body burning. Legs and feet are enough. Hope you get some relief.

Susanne C. 05-09-2012 05:34 PM

Thank you Kitt. Actually this is what I think is most likely, and of course I hope it is something else, so I want to try what I can.
I have a question just for you. Why do some websites, like Mayo, say that CMT rarely causes pain? If small fiber neuropathy causes severe pain, and CMT causes serious small fiber neuropathy, why would CMT patients not have pain? Many websites do say it can cause serious pain, but the ones that don't really anger me. My neurologist, who had praised my pain tolerance through a 2 hour EMG/NCS ( much of which I barely felt ) decided once it was CMT that it shouldn't hurt very much. That's just the SFN component. My foot, ankle, leg, hand, and wrist muscles are visibly wasted. My legs have the dead weight and stiffness of cement. I can barely go up steps. How can this not create pain?
The gabapentin had been controlling the burning until now. The oxycodone the shooting leg pains and other muscle pain. I was really getting by okay, in spite of increasing weakness. That was just the way it is and i was okay with it. This is a whole new ball game and I don't want to play if I don't have to.

Kitt 05-09-2012 06:15 PM

I know. I have seen those websites as well. We know there are websites which truly do know and those that do not. I guess that's how misinformation gets out there.

CMT has taken much from me and it still is as it marches (progresses) on. Who knows how a person will end up. No one. It is a scary thing. All you can do is try and deal with the symptoms as they come along - and they do.

I know what you are saying about your legs feeling like dead weight and the stiffness of cement. I have said before that people who do not understand it - well how can they if they haven't walked a mile in the other person's shoes - should strap on some cement blocks and see how that feels to try and walk. I don't do stairs other than three anymore. It just does not work anymore at all. I go down those stairs backwards holding on to handrails as going backwards down the stairs is easier. You can tell when you have overdone.

My Mom used to say that her hands were like a cub bear with boxing gloves on. I am just beginning to find out how she felt. Not my hands so far though. Her feet/legs were affected also but her hands were affected first. And as we know, CMT symptoms vary greatly even within the same family. So true.

I do hope you get to the bottom of what is happening with you. Take care.

Kitt 05-09-2012 06:27 PM

Hi Suzanne C. After looking at the Mayo site it said that CMT doesn't generally cause pain. But you know it might depend on the type. I do know of those who do not have any pain. So who really knows. Mayo doesn't go into all the types of CMT either and there are many types. Some other sites do cover all the types, etc.

I think the Mayo site is just an overview of it. JMO and I do have pain.

echoes long ago 05-09-2012 10:36 PM

i get the heavy as tree trunks or cement feeling in my legs on any kind of exertion such as walking fast or attempting to run, climbing more than a few stairs, walking uphill. besides the numbness in my big toes, it was the first symptom that i had 11 years ago now. i used to run 8 miles or more regularly, i cant run more than 10 steps without this heavy dead weight feeling.

Kitt is this a symptom common or mainly indicative of CMT? i thought it was a general symptom of PN that of course not everyone has but some do.

Susanne C. 05-10-2012 05:58 AM

I'm not Kitt, but I would say it isn't necessarily CMT. Even as a child I couldn't really run, and I certainly couldn't run even a few steps now. I think the cement feeling may be from the SFN, the muscle weakness and wasting is a CMT symptom. My numbness did start in my toes, but in 14 years it has progressed to my knees.
How do you line up with other CMT indicators? Difficulty in walking uphill or up stairs (and eventually down stairs) is an indicator. Is your PN idiopathic at this point?

echoes long ago 05-10-2012 06:55 AM

i have those difficulties walking uphill and upstairs and am awkward walking downstairs. im officially ideopathic but pretty sure i have a toxic cause for my sensory motor axonal PN. im surprised because i never read before in 11 years that these were indicators for cmt.

Kitt 05-10-2012 09:33 AM

echoes long ago,

Check this site out. Maybe it will give you some idea about CMT.

http://www.cmtausa.org/index.php?opt...d=10&Itemid=41

There are many, many types of PN so it would be hard to tell without some further tests as far as CMT. Family history can also be a factor and help with a diagnosis. EMG/NCV testing can tell if a person has CMT 1 or CMT 2. And of course DNA blood testing for the types that they can now test for. That can also tell the sub type. CMT 1 shows as slower than normal nerve conduction speed. CMT 2 shows near normal nerve conduction speed or mildly slowed.

Unlike Susanne C. symptoms of CMT did not become evident until much later in my life. I could do anything and everything and I did for a long, long time. The symptoms varied greatly in my family and that is expected. No CMTer is alike.

I am not young either. I'm grateful that symptoms did not show up for a long long time. And then they weren't that bad at all. However, CMT did progress as it does and in the past three to four years CMT has really progressed for me. It has robbed me of much and continues to do so.

I do not need any heavy exertion such as walking fast (can't do anymore) to have my feet/legs feel like cement, can't run anymore in fact for the past say 18 years, going up hill is much easier than going down hill. That's the reason why I go down the few steps backwards using hand rails in my house. It is easier to do it this way as I've heard other CMTers say. I'm sure that's due to that peroneal muscle being affected greatly. CMT is of the PNS (Peripheral Nervous System). They now are finding it affects other places - depending on the type.

I cannot move my toes hardly at all. They are getting to the point of being numb. My feet/toes are very, very sensitive. I can't stand much covers hanging on my toes at all. I cannot stand on my tiptoes or my heels and have not been able to do that for years either. If I am on the floor I have to use a sturdy piece of furniture in order to get up. That's happened quite a few years ago. It's all progression of this wonderful (NOT) CMT. But you know that aging also comes into play as well and that is true for the general population as well.

For more information on CMT check out my site on CMT. At the top of this forum click on "PN Tips, Resources, Supplements and Other Treatments.

There is no cure/treatment at this time for CMT. Just no special diet, supplement or magic. A person has to deal with the symptoms as they come along. You can build up good muscle but not diseased/atrophied muscle. I also got AFO's a year ago now. They help some but I still use a cane and/or an arm. They are the least supportive kind for now. You lose more good muscle wearing them as well. But there came a point where I had to get them. These are called Toe Offs. I take them off around 7:00 P.M. at night. At some point I will have to probably have casted AFO's. Time will tell.



Hope this helps.

echoes long ago 05-10-2012 11:32 AM

thanks for the link. i had checked a few sites this morning but everything was worded vaguely in the symptom department. weakness, atrophy etc.

ive had 8 emg/ncs's over the years. no family history at all. we had one big family reunion a few years ago and I was going around to everyone, hey do you know anyone in the family who had any of these symptoms....ha!

i have the toes dont flex much at all thing also.

i guess all of these causes have many symptoms that overlap since they are doing basically the same type of damage to the same parts of the nerve as other causes. What caught my attention was the walking with cement legs comment. I describe it as my legs becoming as heavy as tree trunks to lift and they super fatigue quicly. I have not really run into or read too many people with PN having that symptom over the years. A few did but most dont. And like i said that was my earliest symptom besides some numbness.

Thanks susanne and Kitt for taking the time to answer.

mrsD 05-10-2012 11:55 AM

The Wiki CMT page says 1 in 2500 have CMT...in some variant.
Making it one of the most common genetic diseases.

This article explains that pain tracts remain intact.

http://en.wikipedia.org/wiki/Charcot...3Tooth_disease

I wonder if the 23andme DNA test will reveal this? It is much much less expensive that the tests at Athena.

Do you know about that, Kitt?

This is the criteria used in the Vit C study.
http://www.mda.org/research/view_ctrial.aspx?id=186
It does not state what type of oral Vit C was used. I wonder if the liposomal or IV type would boost any potential results?

This paper does not give details as to what form the Vit C was in when given:
http://www.ncbi.nlm.nih.gov/pubmed/21393063

Some recent research about Vit C... so they are still looking at it:
http://www.ncbi.nlm.nih.gov/pubmed/22114285

Kitt 05-10-2012 01:56 PM

Quote:

Originally Posted by mrsD (Post 878097)
The Wiki CMT page says 1 in 2500 have CMT...in some variant.
Making it one of the most common genetic diseases.

This article explains that pain tracts remain intact.

http://en.wikipedia.org/wiki/Charcot...3Tooth_disease

I wonder if the 23andme DNA test will reveal this? It is much much less expensive that the tests at Athena.

Do you know about that, Kitt?

This is the criteria used in the Vit C study.
http://www.mda.org/research/view_ctrial.aspx?id=186
It does not state what type of oral Vit C was used. I wonder if the liposomal or IV type would boost any potential results?

This paper does not give details as to what form the Vit C was in when given:
http://www.ncbi.nlm.nih.gov/pubmed/21393063

Some recent research about Vit C... so they are still looking at it:
http://www.ncbi.nlm.nih.gov/pubmed/22114285

CMT is the most common "inherited" peripheral neuropathy. The trouble is that it is misdiagnosed as polio, MS, Fredrick's Ataxia, etc.

I looked up 23 and Me and I do not believe that it would be testing for CMT. As I've said before I have heard that Athena Diagnostics pretty much has that testing sewn up and they are very expensive. There are papers to sign, etc. and they should be read totally and understood before a person agrees to it. Sometimes insurance will pay and other times they won't. DNA blood testing is good if you want to know the sub type. Not really necessary in my view as there is no cure/treatment for any type of CMT as of yet.

Sometimes the DNA testing will neither rule in or out a type of CMT. The most common types CMT 1, CMT 2 and CMT X would be pretty readily interpreted. But others, and there are more than 50 types aren't so easy. Even if the test shows you don't have it, you might if that makes sense. It just might be a type that they do not test for as of yet.

In 2008 from a reputable source stated that there were more than 50 identified types of CMT and no end in sight. CMT can pretty much be separated into two kinds - the "demylenating" forms (CMT1 and CMT4) and the "axonal" forms (CMT2, autosomal recessive CMT2, HSAN, and HMN).

The Vitamin C studies have never panned out. I can't remember off hand the dose given. One trial in The Netherlands used 4 capsules of 250 mg. twice daily equals 1000 mg. during a one year trial. A placebo was used on some and no one knew what they were taking. In some of the trials elsewhere as well people had to get out of the study due to adverse effects, etc. These studies were for CMT1A only. There was much criteria to get into the trials. Other places in the U.S. did a two year study. Here is a site:

http://quest.mda.org/news/cmt-vitamin-c

They have also been doing trials on CoQ10 and CMT. Nothing proven here either.

These trials have not been in the U.S. alone but all over the world.

Your second site on Vitamin C (Ascorbic Acid) trials pretty much says it all. There is really no significant effect. Some CMTers have tried taking a lot of Vitamin C on their own thinking that it could do something for them. But it's in vein. There is much that goes into these trials.

CMT is really considered a rare or orphan disease and some other diseases as well so there is little incentive for drug companies to develop drugs for it. CMT is all over the world. Time will tell.

Kitt 05-10-2012 04:42 PM

Vitamin B6
 
A mega dose of Vitamin B6 has a moderate to significant risk for CMTers.

http://www.cmtausa.org/index.php?opt...d=68&Itemid=42

And also there is more information for everyone. It's under the fact sheet by Vitamin B6.

http://ods.od.nih.gov/factsheets/Vit...ofessional/#h7

I had read this before but not thoroughly. I find it interesting.

Susanne C. 05-10-2012 05:14 PM

Quote:

Originally Posted by echoes long ago (Post 878003)
i have those difficulties walking uphill and upstairs and am awkward walking downstairs. im officially ideopathic but pretty sure i have a toxic cause for my sensory motor axonal PN. im surprised because i never read before in 11 years that these were indicators for cmt.

I just noticed the mention of axonal. CMT type 2 is axonal, which is what I have. As Kitt mentioned CMT is also called hereditary sensory motor neuropathy. It seems as if everyone with CMT has trouble with stairs. The first muscles to be affected are often the ones that lift the foot, which is why so many people wear ankle-foot orthotics. My half- sister wore leg braces from childhood, and I am planning on going to an orthotist as I am dragging my feet more lately, which will lead to a fall sooner or later.


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