Pregabalin or duloxetine? - plus topiramate - any thoughts?

[calluna]

Hi all

Just thought I would throw this one out there to see what thoughts you might have... I've had a read through past threads, but thought it might be worth asking anyway.

Today I saw Dr G again. I would like to have fewer limitations in my life, so that means more effective pain relief would be sensible. I am managing with tramadol, but breakthrough pain is very significant. Dr G suggests that I go back on either pregabalin (Lyrica), which has helped me in the past, or else try duloxetine, which would be a new med for me. He also wants me to try topiramate (Topamax) at the same time.

I really, really, really don't want to risk gaining any weight. I have lost 17 lbs over the last year, and I feel so much better for it. When I lose another 2 stone (28lbs for those who don't think in Imperial measures) then my BMI will be at 25 - I would really like to lose a further stone (or even two) on top of that. I certainly don't want to gain any weight at all. Dr G tells me that I will lose weight on topiramate, and that it should help with the pain as well.

Any experience with both pregabalin and topiramate together? - or indeed duloxetine and topiramate? I can't find anything on the forums about anyone taking both at the same time, and would be grateful for any comments.

[ezer]

I managed to gain weight on Topamax. Topamax has the strange property of altering the perception of taste. Sugar tastes like cardboard... For some people it works and you don't feel like eating but for others you just adapt.
But the side effects of Topamax were just too shocking. I could not remember the names of my kids. I am usually pretty frugal but caught myself going on shopping sprees. I became a very aggressive driver etc... I will not touch that substance but again everybody is different.

[calluna]

Hmmm, scary.

We don't eat sugar at all, so that wouldn't be an issue. But the rest of it - well, I'll have to wait and see.

What dose were you on, could I ask?

[ezer]

At the maximum I was on 100mg/day. I ramped up very slowly up to that level.

[calluna]

So that was a relatively low dose.... thankyou for telling me about your experience.

I am finding all sorts of comments about this drug online. Some people say it is wonderful and they get excellent pain relief and have never had any side effects - some people had terrible side effects and no pain relief.

Well, I think I will give it a try first. I have discovered that there is no interaction between tramadol and topiramate, so I would not have to do without pain relief whilst the dose is titrating up. I'll talk to my GP and see what he says. I am not keen on the idea of starting two meds at the same time...

[ezer]

I got both. Terrible side effects and pain relief (for a couple of months than it stopped working completely)!

[calluna]

Well, I am (of course) hoping for good pain relief that lasts, and no side effects. It could happen!

Have not got a GP appointment yet, must go and ring the surgery and get that sorted.

[Thunderman69]

Hi Calluna -

I have been on Topimax since last October.. I started out at low dosage of 75 mg per day and eventually ended up at 300 mg per day in February. I was taking it with Cymbalta 60 mg as well. In my opinion the Topimax is a complete waste of time. It has nasty side effects - please google topiramate and kidney stones/topiramate and glaucoma. I did not develop the serious side effects thankfully.. The others have listed the more minor side effects such as diziness and memory loss (which I experienced), and when I weighed the pros and cons of this medication against the zero benefit I got I decided to taper off of it. I am on 50 mg per day and should be totally done by early next week.. I just never felt any benefit from it at all.

That said, I did see a benefit from Cymbalta and Gabapentin taken together. Last year I had to stop taking the Gaba because it was giving me vertigo. I was taking about 1800 mg of it at the time.. The trouble is that it really helped with the burning pain. I am in the midst of a nasty flare thats going on 2 months now so I gave in to the Gaba and I am tapering up on it again. I am at 900 mg per day with no prob and going to start at 1200 mg tomorrow.. Keeping my fingers crossed me body holds it better this round! Calluna, have you mixed Cymbalta and gaba? If not, I would start it asap. Dont waste your time with Topirimate ( just my opinion, but I havent found much positive feedback as it relates to PN'ers)..

Also - another drug is out that contains gabapentin called Gralise. it has less side effects and you dont need to take as much of it. It comes as a time released tablet. I had to get off of it due to Insurance considerations. Its very expensive... But it a great alternative for those that are sensitive to the gabapentin.

Cheers -



Matt

[calluna]

Thanks for this, Matt.

I have tried gabapentin before this, took the dose up to 1800 mg (which took ages) and was having such problems with side effects and still not getting any pain relief that we decided it was just not worth . I do not want to ever try it again, the side effects were seriously unpleasant.

It is interesting that your experience has been so different - it does seem that we all respond differently, doesn't it? A good thing that we have some choice of meds, really....

I tried pregabalin a couple of years ago, and found this much more helpful, I did get good pain relief then and I thought that the side effects weren't too bad at all - but my husband says that I seemed like a different person when I was taking it. I wasn't really aware of this myself at all, but the idea is a bit worrying.

And yes I have googled topiramate, looked at the list of side effects, and got quite scared about it. But I do know that lots of people take it with no problems at all. I am hoping to be one of them.

My pain consultant thinks that the topiramate/pregabalin combination should give me good pain relief with minimal side effects, and that it may also help with the temporal nerve pain that I've been getting. I do trust him, and I am going to follow his advice, but I will admit that I am a bit apprehensive about starting two meds at the same time, one of them completely new to me. However my GP is being very supportive and helpful, and he's only on the end of the phone after all....

I am picking up the prescription tomorrow - if the local chemist has it all in stock, which I somehow doubt - otherwise it will be next week. So we'll see....

[Thunderman69]

I totally understand what you mean. I had such a hard time with the nuerontin and cymbalta at first and I had to decide between severe pain or vertigo! The vertigo landed me in the emergency room last year when I first started the nuero stabilizing drugs. I ended up just cutting back the gabapentin to like 1200 mg a day and dealt with being dizzy all summer. My wife had to literally hold me by the arm when we would get to the grocery together. I would have to prop up againt a table ( standing of course ). I decided it was better than laying in bed suffering in hellish pain. Decisions .. Decisions.

I hope the topiramate helps you Calluna! My pain specialist had such high hopes that it would help me but I can honestly say it did nothing for me. I am still very interested in the lyrica however but its so damn expensive and I am already paying thru the teeth because of this demon of a disease. I wonder when pregablin becomes a generic.....

LindsayG helped me find a Canadian pharmacy called bluesky.com that looks very promising for me however. If things work according to advertised on the site I can cut my Cymbalta expense down from $225/mth to $66/mth!
That may open up the door for Lyrica - I heard the Cymbalta and lyrica coctail is very potent for pain relief and the Lyrica has less side effects! So I am excited.

Good luck and please keep updating on how the Topiramate is working for you. I still have about 50 of the 100 mg tabs of it and 75 of the 50 mg tabs ... If I get Lyrica I might consider that mix.

Matt