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Old 05-07-2008, 06:38 PM   #1
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Doc said stop Lyrica & start Neurontin w/o titrating...

Yesterday's visit to my orthopedic/pain doc was another exercise in frustration. He said that due to the side effects I've been experiencing with the Lyrica, (weight gain, swelling, increased muscle pain), I should discontinue taking it, and he put me on Neurontin. Diet says she had disastrous results doing this...no titrating down on the Lyrica, just going straight to the Neurontin.

I just called my internist after reading Diet's warning. She said it could be that the OP has had experience with doing things this way, but she thought that it was odd that I was on a twice a day treatment of Lyrica (150mg each), and the dose of Neurontin is only 600 mg, once a day. She said that the relatively short half-life of the Neurontin makes it a poor candidate for a once-a-day dosage, especially coming from a moderately high dosage of Lyrica....in other words, it's a low dose of Neurontin compared to the Lyrica I was taking.

I have a call into this turkey, because I am alone during the week, sleep alone all the time due to my insomnia, and now I am very nervous about this whole thing. If something happened to me, it could be potentially quite a long time before anyone would know it.

Thanks, Diet, for sharing your experience....anyone else care to chime in?

TexMom

Last edited by TexMom85; 05-07-2008 at 06:38 PM. Reason: left out details

 
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Old 05-07-2008, 11:00 PM   #2
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Re: Doc said stop Lyrica & start Neurontin w/o titrating...

Tex, what the pm is doing is more than likely building up your dosage of neurotin once he makes sure that you can tolerate it.

What I don't like is the fact that you are having swelling from the Lyrica and that has not subsided and he is switching you to a brand new medication. Neurotin can cause swelling as a side effect. If the swelling has not subsided from the lyrica, how would you know if the neurotin is causing swelling or not?

When I reacted to neurotin my face blew up and I started having coughing and breathing issues. I went into analphalysis.

I am sorry if I scared you. Sometimes it is difficult to know whether to post or not.

 
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Old 05-07-2008, 11:52 PM   #3
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Re: Doc said stop Lyrica & start Neurontin w/o titrating...

Hey TexMom, I really don't think you have anything to worry about risk wise. No more than anyone taking an new drug. Diet an allergic reaction, full blown analphalysis, Unless your her twin sister, you have no greater chance of being alergic to this med than any other. It's great to share experience,es, But I don't think her intent was to imply it's a dangerous med. There actually both n the same family, their both anti convuslants and you dobn't have a seizure disorder. The real difference is that gthe makers of lyrica speent the time and money actually doing clinical trials to treat neuropathic pain and post herpetic neuralgia after docs had used anti siezure meds to trerat pain although it was considered an off label use. Doing the trials simply allows them to claim they are the only FDA aproved med for neuro pain. Why would a well proven med go to the trouble of doing a tiral when it isn't neccesarry and has been used safely for years by people that only experienced droswiness. The normal starting dose of neurontin for pain is 100 mgs twice a day, Your doc is trippling that so he isn't starting low, I'm sure he will titrate the med but you have to start somewhere and bit's always better to be safe than sorry. If you continue to have symptoms, it just means that you have symptoms to drugs in this class.

Knowledge and research is great, but there is a point where it becomes insulting to the doc. Calling another doc and then questing his choice based on a person you met on the nets allergic reaction really isn't cause to question your doc. If your doc is a PM doc he should be more experiemced in treating pan with the antiseizure class. It's not like your GP said it so absurd don't do it, I'll take over prescribing because this guy is a quack. He admitted he'w s not well versed in the use r class of medication, that combined with someone elses alergy is hardly cause to question your docs ability and that's exactly what your doing, You take the chance of either insulting or appearing your not going to take a chance because it's not the med you want so there is no point in trying adjunct therapies. It's no dfferent than changing antibiotics mid therapy because of side efects or your not responding.

There is nothing wrong with research and sharing info but there is no reason to think of every worst case sceario and believe your one in 10,000 or whatever the stats are that might have a negative reaction simply because Neurontin hasn't needed a clinical trial to convince docs and patients it's an effective treatment for some for this type of pain. Just like Lyrica is only effective or tolerated by some. The FDA approval means very little to the docs that has seen the results of using the dozen or so other antiseizure meds available for the last 20 years before Lyrica hit the market and they knew the marketing edge FDA aproval meant. The only aproved med to treat neuro pathic pain. Sounds impressive, but without the years of other anticonvulsant use, they never would have bothered doing a trial for neuro pain..

IMO the dose is proportionately high, although some people take up to 3600 mgs of neurontin. Both drugs are in the same class which limits the lileyhood of an allergic reaction but hopefully they are different enough to lessen the side effects. He's doing the right thing and there isn't a better choice than trying a different med at a proper starting dose. If questioning your docs every move is going to be an ongoing thing everytime you read about someone having an negative reaction, your going to find it hard to keep a doc. Just put yorself in the docs shoes. If you were a profesional and you had the choice of treating someone that respects your judgement, education and experience or treating someone that questions every move you make, who would you choose to treat?

You have to do what you feel is right for you, but someone elses allergy is hardly reason to question your doc. Of course there is someone out there that's allergic, you just happened to meeet one.
Good luck, Dave

 
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Old 05-08-2008, 12:17 AM   #4
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Re: Doc said stop Lyrica & start Neurontin w/o titrating...

Quote:
Originally Posted by TexMom85 View Post
Yesterday's visit to my orthopedic/pain doc was another exercise in frustration. He said that due to the side effects I've been experiencing with the Lyrica, (weight gain, swelling, increased muscle pain), I should discontinue taking it, and he put me on Neurontin. Diet says she had disastrous results doing this...no titrating down on the Lyrica, just going straight to the Neurontin.

I just called my internist after reading Diet's warning. She said it could be that the OP has had experience with doing things this way, but she thought that it was odd that I was on a twice a day treatment of Lyrica (150mg each), and the dose of Neurontin is only 600 mg, once a day. She said that the relatively short half-life of the Neurontin makes it a poor candidate for a once-a-day dosage, especially coming from a moderately high dosage of Lyrica....in other words, it's a low dose of Neurontin compared to the Lyrica I was taking.

I have a call into this turkey, because I am alone during the week, sleep alone all the time due to my insomnia, and now I am very nervous about this whole thing. If something happened to me, it could be potentially quite a long time before anyone would know it.

Thanks, Diet, for sharing your experience....anyone else care to chime in?

TexMom

I had stopped taking Neurontin because I had the same problems with it that you had with the Lyrica. I then switched to the Lyrica. Eventually I stopped that and chagned to Topamax. The Lyrica also caused weight gain etc. To me, they are the same drug. Same side effects. I would wake up in the morning and could not even bend my fingers because of the swelling and pain.

 
Old 05-08-2008, 06:15 AM   #5
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Re: Doc said stop Lyrica & start Neurontin w/o titrating...

Thank you Shoreline. You said what I was trying to say but much more eloquently.

 
Old 05-08-2008, 09:28 AM   #6
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Doctors should be able to handle our questions

Dave,
Thanks for the advice, but I don't agree with you. I don't normally pit one doctor against another, but understand that I have had a pretty lousy track record with doctors in the past, even ones I have had a long-term relationship with. This OS/PM has relegated me to his PA on most of my office visits, and prescribed two different pain meds that aggravated my insomnia, (which he knows I suffer from but seemed to ignore), which contributed to my sense of uncertainty with his decision to stop the Lyrica cold-turkey and start the Neurontin.

I wasn't necessarily worried I would have the same reaction as Diet, but since I did experience such severe side effects from the Lyrica, and he let me stay on it for four months despite that fact, I was worried that I might have a greater chance of a bad reaction to the Neurontin. The PA for another physician in the practice called me last night to reassure me that my doc knows what he's doing (although her doc never prescribes either Lyrica or Neurontin) and that I should continue with the regimen he prescribed.

I have had doctors who, after I have experienced bad reactions to drugs, have told me to continue on them anyway, and in many cases this has led to additional health problems. I have only been seeing this doctor since November, and as I said, I see his PA more than him, so we haven't established a strong relationship as of yet. Forgive me for being skeptical and concerned; I've just had too many bad experiences in the past, and I am trying to protect myself the best way I can from bringing on any more health issues. My internist did not suggest that I not follow the OS/PM's treatment; and in fact said that she wouldn't feel comfortable telling me what to do without a neurologist's consult. The reason I called her is because I knew she had prescribed Lyrica for some of her patients, and I felt she would be able to give me an informed opinion regarding my concerns.

Unfortunately, with the number and nature of ailments that I have, I cannot have a "one stop and shop" doctor for treatment. I do tell each of my physicians what the other is doing, not to undermine, intimidate or tick them off, but so they know what I am being treated for and with what medications. I try to be well-informed in order to make the most of my office visits. If that fact pi$$es off a doctor, then he/she is not the doctor for me. I am always respectful of a doctor's knowledge and experience and am not the type to overtly challenge the doctor. But I do try to stand up for myself, and if the regimen prescribed is either not working or is causing other problems, or is know to have potentially serious side effects, I will speak up. Too many times in the past, I did not speak up, and I have had two surgeries that might have been unnecessary, and many health issues as a result of improper treatment.

It took me a very long time to find my present internist, with whom I have developed a trusting relationship and who takes the time to talk with me about how medications work and how they might apply to me. The OS/PM has not done that. He seems to busy to have that kind of relationship with me, which is why I have some uncertainty about his suggested treatment. I have decided to move on to someone else.

While I can appreciate the comments about annoying doctors, I take issue with the statement that my research could be insulting to the doctor. IMO, my doctor should take my efforts at knowing about my treatment options as an indication of my dedication to getting well and avoiding any potential problems that could arise from treatment. After all, I know my body the best. Why not give him/her the benefit of knowing my concerns so as to make an even more informed decision on my treatment? Most of my questions are in the form of "Would medication x work for me? How does this med x that you prescribed interact with my other meds? Will it bother my other ailments? I've read about bad reactions to this, what's your opinion?" Those can hardly be considered as attempts to challenge the doctor's authority.

When I was in Corporate America, I often was told by others, peers, managers and "users" alike, how to do my job. Since I was confident in what I did (although not to the point of being an egomaniac), I would listen to their comments and advice, and sift out what was useful and useless. I always took these things with the attitude that they were trying to help, although sometimes it was a control freak trying to tell me what to do. I just did my job, and most of that useless advice I either responded with an explanation of why I did it my way, or I just ignored it and moved on. I was then, and am now, my own best advocate.

Since I am alone in my house during the work week and sleep alone every night, it is a good reason to exercise caution when making a change of this magnitude. Even if I didn't experience the one-in-500,000 (or whatever it is) reaction that Diet did, I could still have a reaction, such as seizures, that would be serious enough to require immediate medical attention. Being alone could result in a delay to getting that attention, so these days, I try to be pro-active. I don't question a doc's "every move," but given the fact that I'd had a bad reaction to the Lyrica and he let me stay on it for 4 months despite my complaints about the side effects I was experiencing, I think it was justifiable on my part to question his advice to immediately stop it and replace it with another drug that could do the same thing or worse. It even states in the Lyrica drug information that you are not supposed to stop taking it suddenly.

So many of the members on this board experience frustration with their doctors and treatment, it boggles the mind. When dealing with situations where the brain/central nervous system is at risk, I would think the doctor would appreciate interest and concern from their patients, rather than a herd of sheep who will go off the cliff if led there.

Sorry for the rant, but you definitely hit a nerve.

Tex

 
Old 05-10-2008, 07:49 AM   #7
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Re: Doc said stop Lyrica & start Neurontin w/o titrating...

Tex, Just wanted to know how things were going. Have you spoken any further with anyone? I so hope that someone can get you on a med regimine that is tailored for you. When you mentioned that you feel that your many health issues require more than one doctor, it got me thinking. (That can be dangerous. )

I am probably going to start sounding like a broken record pretty soon, but I can't say enough about Physiatrists. These are docs who specialize in physical medicine and rehabilitation (PM&R). This is what my PM is, and I think that, unfortunately, the name tends to confuse people sometimes. They assume, if they are chronic, that the word "rehabilitation" is a contradiction to pain "management". It is in fact just the opposite. My PM does have short term pain patients, but the majority of his patients are chronic, including me.

Physiatrists recieve extensive training in PM. They are generally open to all modalities, including meds, and have a tendency to have a more comprehensive knowledge of the importance of prescribing narcotics for pain. I'm not trying to say that they have a reputation for just prescribing narcotics, willy nilly, to every patient who walks in their door, but they do have a tendency to be less afraid to do so. They don't focus on one area of medicine, such as a surgeon or a neurologist. They treat the "whole" patient.

This just sounds like a good option for what your needs are. Of course, it is up to you. I am not trying in any way to tell you what to do. I just feel that not many people have heard of this specialty and how beneficial these docs can be for people in our position. I had never heard of this specialty until I had CP, and I worked for years in HMO's. I was familiar with almost every specialty there was. Key word being "almost".

Just thought I'd throw that out there. Don't know if it is something you are interested in, but I figure we can all benefit from one another's experience. If you do a search under the word physiatrist, you can get a lot more info.

Take care my friend and God Bless, cmpgirl

 
Old 05-10-2008, 09:48 AM   #8
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Re: Doc said stop Lyrica & start Neurontin w/o titrating...

Tex, I have been praying for you and was wondering what's happening as well. I pray that you are okay and have gotten the meds straightened out.

 
Old 05-10-2008, 11:17 AM   #9
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Re: Doc said stop Lyrica & start Neurontin w/o titrating...

Hi All,

I did speak to my doctor's PA, and she reassured me that I should be fine with stopping the Lyrica and starting the Neurontin. Her explanation was that these two drugs are from the same family, and the warning regarding the possibility of seizures when stopping suddenly is really meant for those patients who actually suffer from seizures, which I do not. It would have been nice if the doctor could have told me that when I asked.

I also told her how my insomnia got irritated by the Relafen and Ultram ER, and she was surprised. She said "we haven't had any patients complain about that" to which I responded with the fact that I've been seeing a sleep doctor for over 15 years and my sleep is so sensitive that taking the wrong vitamin supplements can stir up my insomnia. I told her I was still needing something for pain, and without seeing me again, they cannot order any narcotics. She called in Daypro (Oxyprozin), a NSAID that she says should work better for me. So far, I'm not impressed.

The reason for the mulitple doctors:
1) Sleep issues - chronic insomnia, sleep apnea and Restless Legs Syndrome; all of which could require a sleep study from time to time
2) Nerve/spinal issues - degenerative disk disease in lower back, pinched nerve in neck -- these have required spinal/cervical injections and my Orthopedic Surgeon also does Pain Management (supposedly)
3) Fibromyalgia, fatigue, weight, hormonal problems, overall health issues -- I go to an internist who is the only one of the three who really tries to take into consideration all of my health issues when treating me, but is limited when it comes to spinal problems and sleep studies. When I saw her last month, my tendonitis had really just started, and she was able to refer me to a great physical therapist, but because I've continued to use my arm fairly actively, it has worsened. At my follow-up with the OS, he diagnosed "tennis elbow" and gave me a brace at the same time he took me off the Lyrica and gave me two pain meds that were bad for me (he'd previously given me Celebrex which does not do a thing).

I am frustrated. I believe the OS/PM doctor has basically ignored my overall health issues and is just focused on my spinal/cervical issues, with a sprinkle of the tennis elbow/tendonitis. I get the feeling that he and his staff think I am just exaggerating my pain. The PA said they were starting some new physical therapy methods that I should look into (oh, and by the way, they own the PT clinic), and I told her I'd been getting it elsewhere for over a month already, and it's not addressing the pain that I am having. They must think I'm a druggie or something, but they really don't consider the whole package, like my internist does.

I called my internist and she is looking into other treatments for me, since she doesn't like to prescribe narcotics due to the tendency for dependence. So, I feel like I need to find a PM, or the Physiatrist that you mentioned, cmp. They can consider not only my nerve pain, and my tendonitis pain, but also the Fibromyalgia pain. Since the OS cannot give me any more injections or steroids for several months, I don't see the value in returning to him, especially since he seems reluctant to treat my pain with anything but NSAIDs.

It is frustrating. Since stopping the Lyrica and starting on the Neurontin, some of the nerve pain is coming back. It's not as bad as prior to the Lyrica, but I can definitely feel it, especially at night. I still have swelling, although it is not as bad as it was on the Lyrica (my toes and tops of my feet are puffy, but I still have ankles).

I have less than three weeks left before hubby's job goes away, along with my health insurance. It is likely that we will get a different provider once he does find a job, so I feel like I should probably tough it out until I know what network we'll be on before I look for a PM doc. I know I'm going to be miserable until then, but I've been suffering anyway, so what's a few more weeks? I don't really have much choice.

Anyway, that's the scoop. Thanks for your prayers and concerns, and for the advice. I really do appreciate it. What would I do without my PM friends? You are a huge source of comfort and encouragement to me! You are all blessings from above!

((Hugs))
Tex

 
Old 05-10-2008, 03:03 PM   #10
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Re: Doc said stop Lyrica & start Neurontin w/o titrating...

Hi TexMom,

My Mom has suffered from shingles for about 2.5 years now and was given Lyrica about 6 months ago. She had a bad experience with it (she was and is also taking the Neurotrin (sp) along with the Lyrica.

But the side affects were too much for her to handles (she's 72) - he doctor instructed her to stop the Lyrica but continue with the Neurotrin. She experienced severe dizziness on the Lyrica.

I don't know if I've helped but as for weaning, etc., I do believe that weaning off a drug is very important. My GYN put me on Lexapro last August and I tried to just stop it - very bad experience so I'm weaning off it with the help of my primary. I think that maybe you should raise this with the doctor. Sometimes I think that they think we can just jump around from med to med without experiencing side affects when quitting X med.

I wish you luck and I'll be looking for your update.

 
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