My pain doc is in the process of changing my meds....He is taking me off of Topamax at the urging of a RA doc and putting me on Lyrica....and then I asked for Cymbalta so he is putting me on both...The insurance company said no to both...well definitely no to the Cymbalta, but I am thinking of picking it up on my own...I want it because it has the anti-depressant element to it too....so they might be able to talk the insurance company into the Lyrica and I will just pay for the Cymbalta..

The insurance company replaced the Cymbalta with Effexor...I said no thanks to that one...

Any opinions...I thought too if they do not approve the Lyrica...I could just stay on the Topamax and add the Cymbalta to the Topamax...Anyone try that?
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Gloria, I wrote you a long reply about 2:20 am and it is floating around in cyber space.
I have been on both meds, I started cymbalta for nerve pain that nothing had touched and have to say it has helped but for it to really help I have to take more then the required doseage and my ins. won't pay for that and cymbalta is expensive, I have however been on it a for a couple of yrs and am in the process of going off for several reasons and have to say that if you research you will see that WD can be really hard.
I was also on lyrica and it helped the pain but I had to tirate up to get good coverage and the more I triated up the worse the side effects, mine was sleeping all the time, and being in lala land and swelling and the swelling was so bad I had to stop it.
I do have to say that I have heard from a lot that both these meds have really.
I have followed your story for sometime and know how well you research, I recommend you do a lot with both these meds as they both work on the brain and can have serious side effetcs.
I wish you the best of luck with what you choose.
Linda

Linda,

Thanks for helping with these drugs...I was prescribed four new drugs this week and have not started any...I am so darn pill phobic. My docs think I am non-compliant, but in truth I am scared to death of drugs. I react terribly to them and I hate the having to wait for them to be out of the body....I have read good and bad things about both drugs. All of my docs with the exception of two have pushed and pushed for me to be on the Neurontin...I mean my pcp handed me a script and said trust me....I just cannot bring myself to put one in my mouth...I do not know why, yet I have taken the Topamax....The Topamax was difficult to get used to though too..It took weeks...but now I have to try two new drugs for pain and two for the stomach...It is too much too soon...so I will take it one step at a time. I had to pay out of pocket for the Cymbalta since the insurance would not approve it...I did not want the Effexor...I heard terrible things about that as well...I hate having to use any drug...

I don't know if this helps or not. My Cymbalta was approved by the insurance company, but I'm already in high doses of so many other generic drugs, like Amitryptiline, Gabapentin, Amantadine, and I'm also already on Depakote. I don't know if they'll approve me when I have to get to the higher dosage for Cymbalta to work for the pain. I think the best way is for you to talk to your MD and/or his NP, and discuss about the reason they think you should be on either drug or both drugs, if necessary. The approval really based on the "letter" from your MD and your records that the insurance has. there has to be a strong reason why the insurance company has to pay for really expensive drugs like Cymbalta.

Since it is very expensive, unless it's really necessary I wouldn't pay for it - but that is me. I pay Zyrtec from my own pocket because the insurance wouldn't cover and I really allergic to many things and I have not found a satisfying alternative. If I found that it works, and insurance company only approved for the small dosage, I probably will pay for the remaining dosage - only IF it works very well for my pain.

The other thing about Cymbalta is it is relatively new. It is only approved for depression and diabetic neuropathic pain. So you kind of gambling the long term effect more than the scenario that use the alternative to Cymbalta.

What was the reason that your MD wants to discontinue the Topamax?
Have you ever been on Neurontin (Gabapentin)? Now the generic is available, and it also contains anti-depressant effect though not much. Have you been on Amitriptyline? It works a MIRACLE for the pain. And I'm sure your insurance company will approve, even on very high doses (I'm taking 150mh HS) And, it has strong anti-depressant property.

hope you'll feel better soon..

p.s. I just noticed your second message. Every night I look at the mouthful of drugs I have to take. Well.. different persons react differently to the drugs. Some just have allergic reaction to almost anything, but some like me, could tolerate drugs very well. Each of us is made differently, and sometimes we forgot that. But even I have to take a month or two to be "free" of unpleasant side effects and get the maximum effects of the drugs. I think you have to ask yourself why you go to the doctor in the first place. I hate doctors who just order me things.. I love doctors that always include me in decision making. But it makes no sense for you to go all that hasle, making appointment, getting to the hospital etc., if you would just contemplate the prescriptions in front ot you. If you really2 have problem (phobia) with it, probably u should see a psychologists. They could help you to overcome your phobia.

You are right it is a phobia...My mother did it to us...She was so afraid that we would use street drugs she made us afraid of drugs that might help us...

I am about to come off topamax. Not because I dont like it but I dont think its working very well any more, and I'm on top dose for pain relief. I'm withdrawing, starting tomorrow. If I get a lot worse, then I'll go back on them. I hate drugs. I tried cymbalta much against my doctors wishes. It made me quite ill. Then I did quite a lot of reading up about it. The clinical trials were short, as far as I could see. As well as treating depression it seemed in some cases to cause it, and there were some cases of suicide. One was a girl who killed herself while taking part in the clinical trials, and had never suffered from depression before. It made me feel very sick, and really upset my insides. It also treats urinary incontinence, but as I was suffereing from retention of urine at the time, and had to self catheterise for six months following an operation, I didnt need to exacerbate that situation!! I take dosulepine, which seems to help me to sleep, and is very similar to Amytryptalline. Neurontin was dreadful. I put on about 28 pounds, very quickly indeed, and I wouldnt consider even trying Lyrica, although my pain management doc wanted me to, as I understand its chemical composition is very similar. The other reason I'm trying to come off Topa. is to see if any of my symptons are actually caused by the drug itself, as my GP has often hinted darkly that they might be. My neuropathy kicks in every day a couple of hours after I get up. Some days are worse than others. When I start I'm going to keep a diary. I believe that you couldnt take both Cymbalta and Topamax because your body could go into a kind of shock which could be fatal. There is a name for it, but I cant remember what it is!
PS. One of the other side effects I got was Thrombocytopenia, which was little pin pricky bruises underneath the skin, but I didnt even mention it to my doc because I got so so sick of going to her, and I began to feel like I was a malingerer. I dont really feel like that any more. But I still feel like there is nothing she can do. except listen to me, and also that my problem is going to go on and on and on, and I am going to live a very long time with it!!

Just wondering how long you've been on Topamax (or others) before you disconitnue use. I was sicker when I was first starting on Neurontin too, but only for the first month or two. The same thing with amitryptiline - i got pretty nauseas at first. But then it just helps more and more with the pain. Don't give up too quickly - that's my "motto."

Except, of course, if you faint or suddenly blind (which happen sometimes with Topamax) - BUT, only in the initial week. If you have glaucoma you shouldn't be on it. If you're one of those people who react violently to some drugs, just be on the viscninity of Emergency Room in the first week.

Also you should start in small dose (or very small dose if you get too much side effects), then increase every one or two weeks, depending on how your body reacts. If you still nauseous, for example, wait until the side effects gone before you go up the dose. And when you go up the dose and you got too sick that you can't manage, go back to the previous dose. Then try again after a week or two. These kind of thing only you could decide - with approval of your doctor.

hope you feel better soon.

agnuscrucis,

This is my problem ....The docs prescribed these medications in the highest dosage possible....Why don't they start at the smallest dose and then work up from there?...If they start low and then work up I might not be as afraid to take them...I do not like to take a capsule either...I like to take a pill that I can break into pieces...Then I can start a low dose and see if I react badly ...if I do not then I can take more of it...I know that sounds crazy, but I have had some really bad reactions to some of these medications....I am getting better though...I feel so badly now I usually just pop them into my mouth and hope for the best...I have stopped reading all of the side effects until after I take it and feel badly......

glad to hear you're a bit better.

unfortunately it is not a common practice for all to start in small dose and wwork your way up. But to myknowledge, it is the common practice of all the doctors in the best teaching hospitals, especially in neurology Dept. what are the medications you're taking + the ones you suppose to take? and what are the dosage?

I think what you can do first is to ask the pharmacist what is the smallest dose of a tablet. For example, if your doctor prescribe 100mg three times a day, you could ask if they could give you in 20mg tablet, so it doesn't really matter that the prescription call for a higher dosage. if they refuse, then the only way is to ask for a different prescription from your doctor.

But of course, work your way up. the standard is to go up the dose every one or two weeks. don't expect you won't get any side effect at all, although it could very well be the case. Also, even after you reach the full therapeutic dose, it will take a month or two to get the full effects due to synaptic plasticity. So don't assume that it doesn't work if you don't feel better right away.

hope you'l;l feel better soon!

I can't imagine why your docs start you at high doses when they must know you are nervous about meds. But you can always break them apart and try them out themselves.

Cymbalta is almost identical to Effexor, just newer. I don't think there's reason to fight the insurance company on this one, just yet. You could try the effexor. If you do'nt like it, then your doc can get cymbalta approved on the basis of the cheaper drug, effexor, failing. They both work, are essentially the same, and have no new magic. They are a combinaton of an SSRI component and a stimulant. You could just as easily be taking an SSRI such as prozac and a stimulant like Ritalin. With that approach, your doctor can actually adjust each piece to tailor-make the med for you. Effexor and Cymbalta are like fixed combinations of the two. The problem with both is that when people get off them they have weird sensations that are, well, uncomfrortalbe weird. Like shocking sensations in their head, or feeling like they feel their brain. Just weirdnesses. Because of this there's a good argument to use NEITHER of these, but to use the older and cheaper drugs Prozac/Zoloft/Celexa/Lexapro which can be stopped with no withdrawal, and combine with a stimulant: Ritalin, Adderal, Wellbutrin, which also have no withdrawal.

The tricyclics: Amitryptline, Nortriptiline, etc, are also great and can help with deepening sleep. And cheap. Have they been tried? Used with anything with an SSRI component, the dose needed of these is much less. I take 20 - 40 mg of Amitryptiline and find it really helps me get a goood night's sleep.

Except tonight---here I am at 1 am, energized because I've been on steroids today, and they always make me extra energetic.

Topamax makes a lot of people feel their thinking is slowed, and I believe it has a black box warning, so there's not so much going for it before using the others.

Lyrica is the new improved Neurontin, from my understanding. (Having not been at the point of considering this, I haven't been reading about it as much). My understanding is that it causes less fatigue than Neurontin. Again, if the insurance company balks, they'd like to see that Neurontin was tried, or that it can't be tried because you can't be given anything more sedating.

Last, something that hasn't been talked about much...Provigil is a drug approved for narcolepsy--it increases wakefulness. It's a mild stimulant of a totally different sort than ritalin/adderal/ etc. It's useful for the sedation produced by all the other drugs, but also, because it's a stimulant, there's real reason to believe it may help pain also.

I take Provigil when I've had a really bad night's sleep, or when I take oxycodone during the day. And I find I function so incredibly well on those days that it seems it is working in many ways at once--making me more alert, sure, but also making me feel, well, more comfortable in general. I haven't thought much before about the question - is it actually working as a drug inhibitor, but my guess is it is, and that's an easily tolerating, smooth med. My insurance company approved after my doctor said my pain meds were sedating me.

Finally, and I know I'm all over the place here, GJ, but there are tests that doctors can do to show that some people are sensitive to drugs. There's an system in the liver which de-activates most of our drugs called the P450 system. Some people turn out to have a lot of the P450 enzymes, and drugs just run through them leaving no effect. These people sometimes need 10 times the dose typical people need to just get an effect. Doctors worry that they are abusing. And there are the reverse, people with so little of the enzyme that a fraction of a pill can send them looping off.

So now there's a blood test to do for the enzyme, and all labs do it, and insurance pays. I think it's great to have done if you think you need different doses of drugs than most people, becuase it's one of those pieces of paper that says to the doctor==this patient isn't making it up; they really do handle drugs different. This article talks about these tests. I do think they can be very important in helping doctors to understand us as individuals, beyond our words.

http://www.labtestsonline.org/news/cyp050316.html

Phobias: As phobias go, I think you've got a rather helpful one. It is much much better to be scared of new drugs than to be a risk-taker here. I think it's a good idea to not take a drug which hasn't been used for years. I don't see any reason to be the first one on the block to use it. Too often we find out later what can wrong. So, not to be hard on yourself--this is good self-preservation. Follow your instincts, and use only what seems necessary, and tried and true. Going slow is good. Look, I mean, we have CHRONIC pain. It's not an emergency, and we can afford to be careful it getting good pain relief. There are always drugs to use for immediate relief, rescue drugs or BT drugs I've read them called here.

I have a doctor who has been trying to get me to take Methotrexate for, oh, I'd say 6 or 7 years now. I went for a second opinion, and he agreed. I'm still not comfortable with the idea. I feel funny going back to him, when he knows I'm not likely to follow his advice, but I figure I'd like to keep him on board, as backup, because maybe someday I'll agree and make his day! But I'm not comfortable with his recommendation; it just scares me too much. And he has to live with that. I frustrate the hell out of him, but every 6 months, I still come for a visit, because I know he cares and thinks he can help.

Oh, GJ, your doctor is breaking one rule of good medicine. Perhaps he feels desperate to help you. But a really good rule is to never, ever change more than one drug at a time. Afterall, if you start 4 drugs and get a side effect, how the heck do you know what caused it.

So perhaps you could enter a contract with him. He agrees to go one drug at a time, and you agree to comply, as long as he raises the dose slowly. During the changeover to just one new drug, you promise not to blame him or hold him responsible for your slow improvement. So you have a deal: you wo'nt act desperate or hold him responsible for slow results, and he won't push more than one drug at a time. Also, the P450 testing, to get a sense of do you metabolize drugs slowly.

I've made a deal with my doc: I keep coming back every 6 months, he keeps advising, and I will follow all advice EXCEPT the advice to go on Methotrexate until I feel more desperate. Within those confines, I will not hold him resposnible for the fact that I still have pain. And I tell him I respect his advice and need to keep hearing it to keep myself reminded of this option.

At some point, I know I'll agree to a 3 month trial, but no more. But I'm still not ready yet.

Also, like you, I have a pain person (my neuro) and a rheumatolgoist. The rheumie is the one pushing the methotrexate the the disease modifying antiarthritics. I get it that he cares about the underlying disease, and is really afriad that all the good pain treatment in the world won't help, unless he can stop the underlying the inflammation. I just haven't bought in.

Topamax I'd never buy into. I want to be more mentally alert, and it's got the least literature pain relief.

Gee I hope this helps; it's 1:20 am, and I'm just still up and way to energized for my needs. Tomrorow I'm doing my first drive in over a year, a two hour drive, and that's why the steroids. They do relieve a lot of the pain,without sedating me (clearly! I could do spring and winter cleaning at once like this).
My neuro lets me take them occasionally, and they do help, but can't be used ongoing. but still, here i'mtryin to sign off and say goodnight and I AM STILL BABBLING!

Hope you find something of use buried in the babel.

Good luck.

Oh, PS and all: A good relationship with your doc is the core. If you can't make that work, all the rest is moot. worth thinking about-Do you like your doctor?