Pregabalin

[Leelee49]

Hi all, back again with another question, I was taking gabapentin a few months ago which was helping with the rls, but I was on the max dose of 3600mg, I was what you call a bit spaced out, don’t know how I managed to work tbh. Anyway, it was making me lose my hair and put weight on so I asked my doc if I could change to pregabalin, because I know that’s supposed to help with pain aswell, and o also have a bad back aswbell as legs. So, I’ve been on them a while now, but they don’t help with any pain and my rls seems to have appeared more during the day. Any suggestions please? Forgot to add. I’m taking 3x 75mg a day, plus I take levothyroxine, venlafaxine and propranolol.

[Phogan]

Well how lucky I must be. I was on Gabba for approximately 6-7 years I think, and it was my decision alone, (without any consultation with my doctor whatsoever,) to give it away.

Reason being that I was on so much other medication at the time, that I felt I had to give something away and so I chose the Gabapentin. My initial dosage was was 900 mg, so I cut it down to 600 for at least 3 weeks, another 3 wks then down to 300, another 3 wks down to 100 and then I just completely stopped taking it all together and without any withdrawal symptoms whatsoever.

And no, my hair did not fall out, and no, I did not put on any weight gain.

But after 6 wks of thoroughly enjoying absolutely no nerve pain, it did slowly begin to return. And between myself and my doctor we decided to try something new. But I'm sorry at this current point in time, I actually forget what it was called. Woops ..... no I don't, I remember now. it was Lyrica, which actually worked a treat and the nerve pain completely disappeared. I won't again go into the details, as to how I gave that up as well, as I have before. I actually only took Lyrica for about 5-6 wks I think, but yes, I no longer take Lyrica either. And the good news is that the nerve pain has not returned. However I still take my Madopar and I'm pretty sure that has something to do with my lack of the nerve pain.

Gosh .... Isn't 3,600 a HUGH dosage?

[Leelee49 in reply to Phogan]

Thanks for the reply, and yes it is, it’s the highest dose as far as I’m aware. I’m pretty sure I could take more pregabalin, but really don’t want to go down that route if I can. A guy I work with told me he has morphine tablets for his back pain, so I might ask my doctor about trying those.

[Phogan in reply to Leelee49]

Ohh how I would love to be able to have morphine tablets. I seem to respond to morphine better than any other pain killer out there. But unfortunately, I believe morphine to be an opiate, and for some unknown reason to me, the doctors down under seem to be somewhat reluctant to prescribe opiates for RLS. They won't even prescribe Tramadol, which appears to be quite a common medication taken by many of you in the group.

[craigm1114 in reply to Phogan]

Yes morphine is an opiate, a very dangerous one. I suffered greatly with ITCHING while on them after an operation to insert a ISID defribrilator. Nasty stuff.

[Joolsg]

Venlafaxine is an anti depressant that makes RLS worse so see your doctor about switching to a safe one like Trazodone or Wellbutrin.

Pregabalin should help with pain so maybe it will kick in soon.

[Leelee49 in reply to Joolsg]

Thankyou Joolsg, I will do. And I’m an impatient sod that wants things to work as soon as, so I will try and wait a bit longer heehee.

[LotteM in reply to Leelee49]

I SO recognise that, Leelee. But, unfortunately, it doesn’t always work that way. And often it is better to examine real closely what you are taking and doing and then act on that. And often you’ll have to give your body a bit of time to get used to the meds.

[Leelee49]

I was on the phone to my gp this morning to order more pregabalin, it was a different doctor, he told me they were trying to get people off it because it’s bad and don’t want people to be on it long, so told me he would call back after speaking to the gp who knows the most about rls, he called back and said I was to try baclofen? Instead. Nothing about not stopping pregab immediately or how to wean off them slowly, I’m so annoyed. It sounded like he wanted to get me off the phone ASAP. I’m not good with words or saying what I want, so stupidly just agreed. Now I’m not sure if I’ve done right.

[Joolsg]

Baclofen is not widely used for RLS. It is primarily used for MS spasms do really don’t think it will help with your RLS.

You’re on 225 mg of Lyrica/ pregabalin and you would need to be on it for a couple of months before ditching it. That way you’ll see if it is helping.

I have no idea why all the GPs are suddenly deciding that the only meds that help RLS are bad. I suspect total ignorance. They need to read up on the subject and buy some recent medical books on the topic.

Pregabalin is not bad unless it’s abused. It’s been shown in trials to be more effective than dopamine agonists.

Anyway, if 225mg of pregabalin isn’t helping maybe add a low dose opioid. God, that’ll give your GP a shock.

I still think your priority is to get off the venlafaxine. Your RLS won’t improve until you do even if you’re on the best RLS drugs.

Jools

[Leelee49 in reply to Joolsg]

Thankyou Jools, if you don’t mind I’m going to show them your reply, maybe they will take note. Thankyou.

[Joolsg in reply to Leelee49]

Fill your boots Lee. I don’t mind at all. Good medical book for him to buy on Amazon is “Clinical Management of Restless Legs Syndrome “ by Drs Lee, Buchfuhrer, Allen & Lee or Dr Buchfuhrer has a great website rls_help.org

The website lists all meds for RLS and those that make it worse. It also has thousands of questions and answers but only look at last 3 years worth.

Jools

[Leelee49]

Me again, I’m currently taking 600mg pregabalin now, but my rls has got worse, it’s all through the day now, any ideas why? Thank you.