This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi Guys

I had a look at other topics and wasn't sure where this question belonged - not drug pipeline, not really regimen, possibly daily life...But eventually settled here - hope no-one minds?

Saw my Neuro today and he has changed my Neurontin to Lyrica (for neuropathic pain). I have been on Neurontin for a long time, and now Lyrica, which he says is better, is available in S. Africa (I know it has been available in the USA for sometime now), so he has decided that it will manage my pain better, especially since my recent exacerbation.

Anyway, I haven't taken it yet - tell the truth I am a bit scared of change, so looked it up a bit, and the side effects seem quite bad

The point of this post:
Was wondering if anyone had any personal expeience with this drug - good or bad?
I will obviously try it for myself, just want to be prepared (I realize that we all react differently) . I have been prescribed 75mg twice a day, I was on 600mg Neurontin 4 times a day.
Also, is it commonly prescribed for MS pain in the USA?

I am also on Baclofen and Amitriptyline for pain...

Thanks for any input.

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Al

Hi Ally,

I don't take Lyrica myself but I have a friend who was just diagnosed with fibromyalgia. She was prescribed Lyrica and said that it's helping with her neuropathic pain. Her exact words were something to the effect "...haven't felt this normal in a while because the pain has just been so bad..." In addition, the side effects don't seem to be a problem for her. However, you might want to look into how it might interact with any other medications you are already taking.

NHE

AllyB
I have taken them all I believe lyrica ,gabopin, neurotin, one other I can't remember. To be honest I could't tell the difference. I was taking 3200mg of neurotin a day. None of them seems to give me any relief. Did they for you? Currently I don't take anything for the pain, I sure wish I could find one that works for me. The only thing I take is Mirapex, Lunesta and I just finished a four week course of Rituxan. My pain is constant in my lower back. Goodluck and change sometimes is a good thing.

Howzit Ally,

Hope you are doing ok now. Sorry I don't know about Lyrica. Just wanted to say hello and let you know I am still enjoying the Rooibos every morning. I gave some to friends and they are crazy about it.

Cheers,

Jack

_________________
RRMS since 01/07.

Artifishualf,

If you haven't been to a pain clinic and been seen by a doctor that specializes in pain, I suggest that you do so.

Too many times doctors give patients a cocktail of drugs to cover up pain, and the real cause of the pain is never found. A pain doctor is trained to find the cause and get rid of it at the source.

I suffered with back and leg pain for over 15 years and was always given three different meds to mask the pain, which never truly got rid of it.

Then a new neuro sent me to a pain clinic and the doctor found that I had a large infection somewhere in my hip area, which he cleared up in three days with a very concentrated shot of steroids in my spine.

Pain doctors are my favorite physicians.

gwa

GWA
Pain clinics in my area have been really cracked down on. Seems there was just to much abuse.

That is a too bad.The doctor that I saw was an anesthesiologist and he really knew his stuff.

gwa

Hi Guys

Thanks for all the responses - and Jack, good to know that the tea is enjoyed (also nice to hear from you too!).

I have had MRI's of c-spine, brain, and thoracic, lumbar spine. I don't have any major problems (other than the ms lesions in c-spine - 3 of them, and brain) - there is a slight narrowing of the nerve root at C6. So I had an electro-myleogram, which showed that there was a problem with my radial nerve, and median nerve in my rt arm, but that the problen originated in the spinal cord. I saw a neuro-surgeon just in case surgery would sort out my problem, and the consensus was that my pain in rt arm/hand, and rt leg and severe L'Hermittes was due to ms lesions, based on where they were in the spine and the distribution of my problems.

I have taken Neurontin and Amitriptyline for a while for neuropathic pain - they work reasonably well together for me, but not on their own. I still have breakthrough pain though, hence the change - I filled the prescription today, but have not yet taken the first dose...

I couldn't agree more re: pain clinics - it is impossible to properly treat pain if the root cause is uncertain - I even had a shot of steroids directly into my c-spine under CT scan guidance - done by an anaesthetist, to reduce inflammation and in case the nerve root was an issue - no dice!

Anyway, truly appreciate all the replies - will update in a week or two to let you know if it is great or hideous!

_________________
Al

Ally,

My wife, who suffered from leg spasms at the time, went to the pain clinic here in London Canada. The neuro rxd Lyrica for her. Said it was better than Neurontin with less side effects.

My wife never did like to take pills and slowly started to build up to the recommended dosage. What she found for herself was anything beyond the lowest dosage ended up causing her a bad upset stomach. So she remained on the lowest dose and within a short period of time the pain from her spasms went away.

Again, because she didn't like to take pills, she weaned herself off the Lyrica about 6 months later and discovered the spasm pain did not return. The neuro told us that in some cases, when the system is given a "jolt" by this kind of medication, the pain goes away.

Although Lyrica does list a number of side effects, it isn't too often that patients experience the more serious ones. The only way you know for sure is to try a medication and see how your body reacts to it.

Harry

My husband suffered from back pain for over 10 years. His pain was concentrated in one area. At first the steriod shots helped alittle and for only a short time. Pain medications like you have all mentioned didn't help. One doctor would say it was from MS and next would say it was a back problem - narrowing of the spine, disc problem, etc. Finally a neurosurgeon (said he couldn't help) sent him to a pain clinic at the hospital. This doctor is the first who helped. To make a long story short, he used radio frequency (sends radio waves through a needle) to cut the nerve that was causing the pain. It definately reduced his pain.

Hi Harry

Thanks so much for all the info regarding Marge and Lyrica - that is reassuring, and as you say, the only way to know for sure is to try it!
I will be taking the first dose tonight (now that my courage has improved!) - the doc said to give it a week or 2 to experience the full effect...
I am not too crazy about pills either - you never know if you feel so bad because your are not too well, or because of the pills! However, I seem to acquire new ones with each visit to the Neuro, though in all fairness to these docs, their arsenal against MS is pretty limited (at the moment), so although I am on interferon, all he can really do is prescribe stuff to try to improve quality of life...So I shouldn't complain because I rattle like a box of Smarties (or M&M's)...

Maggie - thanks for your input too. I am so glad that they were able to get to the root (no pun intended) of your husband's back pain and sort it out - what a relief that must have been.
I am aware of the type of treatment that you refer to and it works wonderfully well if the pain can be narrowed to a specific nerve (the TENS machine is supposed to work in a similar, though temporary, fashion by interupting the transmission of pain signals along nerve pathways - I tried it for dental work and it was good, but also tried it for labour, and it didn't help!) - which must have been the case with your husband. It has been established by my Neuro, a Neurosurgeon, an Anaesthetist, and my Oncologist that my pain is caused by CNS damage between C3 & C6 - because of MS lesions, which was why the cortisone shot didn't help (would have helped temporarily if there was nerve root compression due to entrapment).
The Neurontin (in combo with the Amitriptyline) does help a bit, so I am hopeful that the Lyrica may be better...Now if I could only get rid of the headaches caused by the Baclofen and Avonex...

You guys have all been great - I would have tried the Lyrica anyway, but it really helps to have one's own gut feel reinforced, and a bit of support and reassurance is so, well, reassuring!

_________________
Al

Hi Ally,

I just got home from my monthly support group meeting. One of the people there had recently switched to Lyrcia from Neurotian. He said it really helped the pins and needles feeling in his legs and so far no noticable side effects.

Hope it works as least as well for you.


Jack

_________________
RRMS since 01/07.

I've been off Lyrica for about a month and the neuro. pain in my skin has definitely increased. I say my skin because wherever it comes in close contact with something like a chair, bed or tight clothes my skin feels like it is full of needles or tiny cuts. It sometimes did this even when I was on Lyrica but usually only when it was either too hot or cold. I was looking forward to drinking a few beers this summer and it is strongly discouraged while on Lyrica. All I know is that when I started on it I felt drunk when I was stone sober. This did pass however with time.
Terry.

Hey there

Jack & Terry - thanks for the input - I have started the Lyrica now, am feeling a little zonked, but not too bad (I am not on a high dose yet) - I think I may have to wait for it to settle down to see how it helps the pain.

Although I have been taking big doses of Neurontin and Amitriptyline for neuropathic pain and Baclofen for muscle spasms for quite a while now, I have not been pain free in so long...I have some hope that this will help, especially after hearing that it has helped others with similar types of pain - deep burning pain, sharp 'electrical shock' like pain, feeling like thousands of needles are pricking your skin, not to mention the spasms that can contort your limbs!
Jack, I don't have a support group any where near me (don't even think there are any active ones in the country), which is why I value the input of this group so much.
Terry - I don't drink any alcohol - I think I had so much when I was a young student, I can't stand the stuff now! Also, I am on Avonex, and other drugs that are metabolised by the liver, so even if I felt the urge...The idea of an ice cold beer or glass of crisp white wine on a hot summer evening is great, but the reality...But you are right - the Lyrica does give you a similar feeling.

_________________
Al

Ally,
I'm on the same meds you are, minus the Avonex, so if you feel the need please feel free to pm me.
Terry