Lyrica & Savella

[Dennis The Menace]

Hi

I'm a long timer lurker/first time poster just wondering if anyone has had any experience of these drugs?

I am currently suffering bad muscle and joint pain that is as worse as I have experienced in over 12 years of having ME. I find that prescription drugs rarely seem to help much so I generally rely on paracetamol to "take the edge off" my pain. However, lyrica and Savella have been suggested to me as drugs which could help considerably.

Any comments/experiences gratefully received.

 

[minkeygirl]

I just started taking a low dose of Lyrica, 50 mgs, every other night. I can say it has helped my "brain" which has been off for years so I like it for that. I didn't have pain so can't comment but but as i said, I can tell it is working on my brain.

I tag @heapsreal since he knows about these things. Im sure others will chime in.

But as you know from lurking, everyone has a different response to the same meds so it's ultimately up to you. What I would say is if you are in pain, then try them. You have nothing to lose.

Oh I wanted to add that I take Sea Mussell every day for my joint pain. I really notice if I haven't taken it. Mine might be more from arthritis but whatever works.

 

[*GG*]

I think Cort Johnson recently wrote about this on Health rising, I think that research is finding "medical" marijuana is more beneficial than any prescription out there!

GG

 

[minkeygirl]

If you can't get it, and I'm pretty sure it's not legal In The UK, then it doesn't matter if it works it not.

 

[heapsreal]

Lyrica seems to be a drug that people either love it or hate it?? Antidepressants for pain like savella seem more hit and miss.
Lyrica is good for that burning nerve type of pain or the painful tingling type pain people get from neuropathy, it is good at calming the brain down and helps with sleep.

I would also look into tramadol for pain, its also a drug that people either hate it or love it, so its all trial and error. Tramadol i find energizing and does lift ones mood, thats if your in the group that find it helps. They also make a slow release version that gives u pain relief for 12hrs. I use it most for a tuffed lower back that arthritic beyond its years lol, tramadol i have found is the best pain killer so far and for me i rate it higher then morphine slow release type pills??

The above is just my experience, im sure others have the opposite but at the end of the day u just dont know how these things will effect u until u try them. if u do feel like crap on them then just stop, dont continue on them for weeks and weeks??

cheers!!!

 

[heapsreal]

Im sure MJ helps some but i think theres more hype then anything, maybe its a part of the big push to get it legalized??
I couldnt see it helping my back issues etc i can see it maybe helpful for headaches and maybe neuropathies??

 

[ukxmrv]

I don't think that Lyrica helped me considerably with my ME neuro type pain but for a while it was the only thing that did. In my case I had to pulse it due to the side effects. Not tried Savella but after serious and long term reactions to other AD's I'd not be willing to try it.

 

[Lynne B]

Hi, There's a good post right now on Health Rising 2014 at:

http://www.cortjohnson.org/blog/201...-treatment-widespread-pain-fibromyalgia-mecfs

It's discussing small fibre neuropathy and pain treatments. It doesn't recommend anti-depressants. Also, over the counter meds don't touch our pain that is caused through lack of energy at the cell level of our sensory nerves.

I've been taking Lyrica for 12 months and Cymbalta for 6. Now I take both. For me, the Lyrica (pregabalin) is good for blunting the burning pain in my feet so I can sleep at night but it's not good enough on its own. The Cymbalta (duloxetine) is noted as the best overall. I find the Cymbalta improves my mood and confidence. Further it is designed to have a neurological effect, (hard for me to understand but you can find it on Wikipedia) so it isn't just a painkiller. However, the discussion notes Cymbalta is only moderately effective overall and i think that's correct, but both Lyrica and Cymbalta are worth trying. Apparently more meds are on the horizon.

At first, both these drugs affected my vision and concentration when driving but now I'm used to them so they're okay in that respect. I got to them through a long line of trying other drugs like gabatine that didn't help enough. We're all different, but I definitely recommend these two for small fibre neuropathy. I don't know if they will help with muscle pain (which may involve long fibre neuropathy) but again, these kinds of drugs are safe and widely used.

Good luck, Lynne

 

[Dennis The Menace]

Thanks all, I really appreciate you taking the time to post in such detail -it certainly means that I'm in for an interesting discussion with my GP.

I can see that the other drugs mentioned are, but does anyone know if Lyrica is licensed in the UK for use with ME?

 

[heapsreal]

Thanks all, I really appreciate you taking the time to post in such detail -it certainly means that I'm in for an interesting discussion with my GP.

I can see that the other drugs mentioned are, but does anyone know if Lyrica is licensed in the UK for use with ME?

here in australia its prescribed for neuropathic pain which your doctor should be able to say your fibro is. If your unable to get lyrica then try lyrica's older brother neurontin/gabapentine, should be cheaper. I find they both help for neuropathic pain but both have a different feel, i think lyrica is more sedating/calming then neurontin, again i have heard others having the opposite effects to me.

 

[ukxmrv]

I can see that the other drugs mentioned are, but does anyone know if Lyrica is licensed in the UK for use with ME?

I don't think that any drug is licensed for use with ME in the UK..... However, Lyrica is being prescribed by some Rheumatologists for FM in hospitals. My London hospital is doing that plus other "experimental" drugs. My GP then took over the prescription. Some Rheumatologists think that ME and FM are exactly the same thing. Normally I'd argue with them but it helps in this case to get drugs.

Some GP's will also prescribe Lyrica and some Neuologists - it's a postcode lottery.

 

[jpcv]

Hi, I have recently started Lyrica 30 mg for muscular pain and it has helped. I would wake up everyfday with pain, now the intensity of pain is much lower.
I don´t know if it would help with pain during a PEM, but fortunately I haven´t had one PEM episode in weeks.