UPDATE: My Story - Any Thoughts Appreciated

[calluna]

Hello again Jen

I did give gabapentin/Neurontin a good shot (my GP wanted me to, it is cheap!) I took it up to 1800mg, but honestly, the side effects were horrible and I was not getting sufficiently good pain relief to justify putting up with them. So that was that, and I won't be trying it again.

Pregabalin/Lyrica is what gabapentin is metabolised to, within the body. I am sure it is a lot more complicated than that, but I've been told that's the short version of it. I've been told also that it is a lot easier with regard to side effects, in general. There are always exceptions of course, and you'll find people who swear by gabapentin and who can't take pregabalin, but in general it does seem to be the case. Unfortunately it is more expensive.

Topiramate was not something I had heard of until my lovely pain consultant suggested it to me. Yes, this combination is safe, remember I am taking these meds at a much lower dose than if they were used as an anti-convulsant. Pregabalin as an anticonvulsant is taken at doses up to 600mg, topiramate up to 500mg. I'm currently on 200mg and 50mg respectively, have been titrating the dose upwards and have paused at this level because I think - not sure! - think that this might be where to stop.

Anyway my consultant told me that this would be a very powerful combination and it seems he is right. I don't think that he suggested it particularly because of weight gain with pregabalin, most people don't gain weight with this med anyway. And although people do lose weight with topiramate, that is not with doses as low as I am taking.

So far I have neither gained nor lost any weight at all, my weight has stayed exactly the same.

No idea if any of this info is useful or not! - but there it is.

There will be lots of us here thinking about you tonight - and the days and nights to come - and wishing you well.

Please stay in touch.

[JMIL]

Thanks Calluna....your information helps a lot. I wrote down the names and dosages so I can ask my doctor next month. Neurontin doesn't seem to be helping me in my opinion. Again, what works for one may not work for another. I currently take 2000 mg/day, but I cannot go any higher. The side effects are just too much. I've given it a good shot, though, I've been on it for almost a year and a half. It's time to re-evaluate Neurontin. One thing I can tell you for sure is, I don't care if a medicine has a side effect of weight gain or loss, if it can help reduce my pain I'm trying it!

I'll update as I have my appointments and procedures. It's a nice feelings knowing I have others thinking of me.

Take Care,

Jen

[donstore]

Hi Jen,
Boy, you have really had a tough time. I would highly recommend Lyrica as it has really helped me quite a bit. It is the new and improved version of gabapentin actually. Oxycodone at higher dosages has also been quite helpful. You really have to try everything to see what works for you. LottaNeve has had a lot of success with her intrathecal pain pump. I would highly advise reading her posts for information on that subject. I have just been diagnosed with bilateral inguinal hernias after five years so I guess that is my new favorite subject.

Don

[calluna]

Hi Jen - if you are making a note of things, I should mention that my pain consultant told me that I could take the doses up to 300mg for the pregabalin and 100mg for the topiramate, if I needed. I'm currently on 200mg and 50mg respectively, so I've still got some slack there.

Don mentions oxycodone, I was on that for some weeks earlier this year whilst waiting to start the current meds, when tramadol was no longer enough and I did find it pretty good. It is definitely better than tramadol, although I was still getting a lot of breakthrough pain with it. I was taking usually 40 - 60mg oxycodone a day. I don't know if that is a high or a low dose.

[helenlegs 11]

Hi again Jen,

As Don and Calluna have mentioned, lyrica/pregabalin often gets good results and is working better for me than neurontin/gabapentin ever did. Just like Calluna I found that the side effects (even when they had diminished with time) didn't really outweigh any benefit from taking this drug. I did stick with it for a good while and titrated right up, then asked for lyrica, as I'd heard from people here about it. When I was eventually prescribed it (whole other expense/NHS story) It worked but made me sleep too well. I was probably exhausted at the time as my Mam was still at home and my Dad and I were trying to care for her (Alzheimer's) The carers who came in twice a day couldn't do the job, getting her washed and ready, in fact they just made her more upset but she was usually OKish with me .
When I think back it was probably that I didn't give up, and took a smack or two, obviously you can't expect someone who is only doing a job to put up with that sort of thing and probably on a minimum wage.
She is in a home now and doing so much better. . . . .Anyway, I digress, I WAS exhausted, not just probably I have to sleep in a bit of a contrived position, always on my front (which does nothing to help morning fright face ) with my hand tucked inside my hip bone to support my pelvis and with Lyrica working so well I was just out for the count. I was waking up with muscle pain and as mornings were always my best time (as per) I decided to stop as I read that muscle pain could be a side effect.
I decided to try again and am taking the doses earlier (no clue why I didn't have the sense to try this before) and it really is working better. No weird muscle pain (apart from the normal piriformis) So I would definitely suggest giving it a go. I know that Don swears by it and many others like Calluna have testified to the advantages of taking this, as opposed to the neurontin. I'm only half as stupid as I was on Neurontin . I did have a difficult time coming off it though (neurontin), although I think it is more usual for people to complain about the side effects, rather than withdrawl. It is actually wise to complain about the side effects to doctors (well over here it is) as that is the only thing that 'swung' it for me, allowing me to get the lyrica prescription as the cost is much higher than for neurontin, so bare that in mind, although your good insurance may make this irrelevant.
I have only just started to take the lyrica again, just wait until I pinch Calluna's prescriptive advice and ask my GP for topiramate. . . . . how (very) DARE I !!! , ask for it that is, I'm sure Calluna won't mind .
Take care
Helen

[JMIL]

Helen, Calluna & Don,
I wanted to send out a thanks to you and everyone for their suggestions. I am especially appreciative of your suggestions regarding Lyrica. I have actually been wanting to switch from Neurontin to Lyrica for a while now, but the truth is I am kind of scared of the reduction process of Neurontin. I tried of reduction (on my own) as a test to see if I noticed any difference in my pain levels. I reduced 200mg - 100mg at at time and the side effects were really difficult. I thought the side effects were difficult when I was increasing to the dose my doctor wanted me on (and we went very slow), but oh my, the 200mg decrease was rough for weeks.

I plan on talking to my pain management doctor in April about switching from Neurontin to Lyrica and possibly Tomiramate (thanks for the dosage amounts Calluna). I feel confident he will agree given I've been on Neurontin for a year and a half with no positive results. I am also going to talk about the reduction of Neurontin and the havoc it caused when I did the slight reduction on my own. I tell myself I have been through much worse so I can make it through this, however it is so difficult with the level of pain I'm in everyday to have to deal with anything above and beyond just the pain. Regardless, I will keep a positve outlook because of the successful results so many of you have seen with Lyrica.

I'll give updates after my appointments, procedures and especially my appointment regarding whether I'm a candidate for an intrathecal pain pump.

Thanks again for everyone's kind words of encouragement. I wish you all the very best day you can possibly have.

Take Care,
Jen

[janetm2]

Jen,
I have to jump in since maybeyou can just switchover vice go down on neurontin like I did. Ask the pain doc although it may depend on dosages. I went from 1500mg a day of neurontin to 75mg of lyrica then up to 150 mg of lyrica a day and now 3 x 75 . At the same time I started on fentanyl patch 12 mcg per hour switch to new patch every 72 hours. Anyway less issues with side affects and afjusted by 1 month timeframe. I was taking oxycodone for flares or tramadol but these two changes and SI joint shots and new acupuncture are ckearing out my pain now that I am almost 2 years post PNE surgery.
Janet

[JMIL]

Janet,
Once again it amazes me at the compassion consistently shown with the forthcoming of information for fellow members to help in any way possible. I took notes of everything you wrote. Thank you for your willingness to take the time to share your information with me. It eases my mind knowing the transition can be easier than I imagined.
My Sincerest Thanks,
Jen

[Violet M]

Hi Jen,

Thanks for sharing your story. You are truly a fighter and an inspiration with your positive attitude. There isn't a lot I can add since the other members have given such great advice. One thing I don't think I saw on the list of things you've tried is ketamine infusions so that's something you could keep in the back of your mind as a possible option.

SI joint injections are pretty straight forward, especially if they use image guidance which I highly recommend. I've had them image guided and not guided -- the image guided ones were much less nerve wracking because it's pretty hard to miss the SI joint on an x-ray, right? They didn't take long either. I don't know what medication you will be getting in yours. Mine were prolotherapy so there was a bit of a pain flare-up afterward but yours could be different. Anyway, hope your procedure goes well on Monday.

Best,

Violet

[janetm2]

I am with Violet on the guided injections. The doctor asked afterwards if the pain was better or worse than expected and I said borderline compared to others I had. The ones in my coccyx maybe a bit less painful but I had unguided cortisone in my toes and missed the first one so tears instantly streamed down my face. Fortunately he got the second and it was almost painless. For SI it was just painful and afterwards I seem to have less affects than others so no pain flare just the pain soreness all moved to the site like a knot back there and a few days slowly retreating after that. I got 80% relief initially and not sure if this second round got the rest. Very worthwhile. Good luck Jen and let us know how it all goes.
Janet