I augmented on Ropinirole 2 years ago and used Tramadol to help the withdrawal symptons. Once over the withdrawal my legs were so much better (I hadn't realised how awful they had become while on Ropinirole). At the same time I increased my ferritin levels to over 100 (currently 128). I took 50mg Tramadol every other night in the hope that I wouldn't get too reliant on it and I suffered the night I didn't take it.
After 2 years I think my body has become tolerant of the Tramadol, I find I have to take 50mg most nights and very often this only lasts a couple of hours and I have to take another. The RLS has also spread to my arms and hands.
My question is - do I continue with Tramadol and increase my dose to 100mg a night, at the risk of becoming tolerant to that also, or do I try Pregabalin and if so do I continue taking Tramadol as well? ie two low doses may work better that one higher dose of one drug?
I am also currently trying to lose weight and understand Pregabalin can have a negative effect on this.
Any ideas, suggestions, appreciated.
Thanks
Pam
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Pam34
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Dear Pam, your story sounds somewhat like mine! I augmentated fairly quickly on still a fairly low dose of ropinirol and afterwards took tramadol 50mg a night to control the RLS. In hindsight the tramadol lost its efficiency after several months, but it took me a few more months to dare to try to stop the tramadol - which at that point did not worsen my symptoms. Increasing the dose of tramadol worked well for my symptoms but not for the rest of me - too nasty side effects.
Since about 4-5 weeks I have changed to a new regime. I alternate between -again- the lowest dose of ropinirole (25mg) and targinact (5/2.5mg). I take ropinirole the first 3 days of the week then switch to targinact for the other 4 days of the week. Have done so for just over a month now. Usually my regime starts losing efficiency after a month, so I have to wait a bit longer to decide how well it works for me.
I just wish there was something we could take that we could rely on for long term. I don't think I could even consider ropinirole again, withdrawal was so horrendous, but I know that tramadol is losing it's effect and as Parminter has said there are questions about augmentation with it. It's having the courage to stop it without really knowing what to do next.
Dr Buchfuhrer previously suggested pregabalin with tramadol 3 times a week but I so far I have resisted starting a new drug. I think now is maybe the time but supplementing something else instead of tramadol. (And then of course persuading my less than knowledgeable GP to prescribe it!) Any suggestions on what I could use instead of Tramadol?
hi LottoM I also agminated on ropinirole so weaned of it been of it know for about 6/7 mths ,I found it was the only D/A that worked for me.I have been on that much stuff nothing seems to work anymore, I would love to go back on ropinirole but I am to scared in case I augment again, its not very nice when you have to wean of it. I have taken the targinact 5mg + also the tramadol but fond the targinact didn't suit me, everyone to your own XXXXXSUE
Thanks Elisse, I'm not sure I have augmentation. The symptoms are nothing like as severe as ropinirole but the tramadol is certainly losing its efficacy. If I increase the dose to 100mg per night then I expect my body will become accustomed to that too. Not sure where to go next!
Sounds like you have become tolerant to the Tramadol, that can happen when taking all sorts of med. But also it might mean your RLS has progressed so the 50mgs doesnt work so well.
See my reply to involuntary dancer. It’s seems Dr B may agree with you about the possibility of my RLS progressing. I guess I hadn’t thought of that - always ready to blame the drugs! He’s given me some things to consider anyway!
They mention Tramadol as a relatively weak opioid and recall it is Dr Earley, one of the good gods of RLS, who says that Tramadol can cause augmentation.
I cannot think that just increasing the dose, doubling then re-doubling, is rational, and it may be dangerous.
So perhaps you should try a stronger opioid, such as a very small dose of methadone - 5mcg - a drug which seems to operate in a way that is particularly helpful for RLS.
To reassure yourself, (and your doctor), why not write to Dr Buchfuhrer? You will find a link to contact him at rlshelp.org .
Obey the instructions about proper writing style, state your case clearly and precisely, and go for it!
I have not written to him (yet) but many people on this site have.
You will get a reply from a Stanford professor within a few days.
Hi Pam, maybe you could take a short break from tramadol to reset your receptors? I agree with the others that increasing the dose is likely to be counter productive ultimately. I would predict that Dr Buchfuhrer will suggest OxyContin and possibly lyrica as well.
The difficulty with lyrica (in addition to weight gain problems) is you have to titrate up so you can’t really go on and off it readily. In fact it can be very difficult to discontinue.
Would you consider using a low dose of ropinerole just for a month or two and then try tramadol again to see if it works better after a break? At least that way you will have thoroughly exhausted the tramadol route before increasing to OxyContin which is quite a potent opioid or lyrica which brings its own problems.
Alternatively you could try Kratom which is a good as-and-when option but I appreciate is not for everyone as it is not legal in UK.
Thanks for answering and everything you say makes sense although I’m not sure I could consider even a small dose of ropinirole at the moment, the memories are too recent. I have received a reply from Dr B - see below
It is much less likely that you are becoming tolerant to tramadol as you are on a very low dose. It is possible that you could be developing augmentation from tramadol (the only non-dopamine drug that may cause augmentation) and although that is also dose related, it sometimes occurs at low doses. It is also possible that your RLS is worsening for other reasons (lower iron levels in your brain despite reasonable blood ferritin levels, other drugs that worsen RLS, increased stress, change in lifestyle or natural worsening of your RLS).
There are several reasonable choices for therapy:
1. You could increase the tramadol and see if this helps the RLS without making it worse after a few months or so.
2. You could add pregabalin (or Horizant if that is available) and that might help considerably. You can even try transitioning from tramadol to pregabalin alone (at higher doses) if that does not cause any side effects (typically sedation, dizziness).
3. You could change the tramadol to a very small dose of a potent opioid like oxycodone or methadone (which may be hard to get from your GP) and is very effective and safe over the long term.
This has given me food for thought. I hadn’t considered it could just be my condition getting worse and also I’m finding working harder and harder, increasing the stress and therefore the legs! Funnily enough I got a follow up appt through yesterday from the neurologist (8 mths after it was due!) so I can discuss the above points with him. It may be a battle - he is not a believer in Tramadol! In fact there is quite a lot we don’t agree on .....
I definitely find stress makes my rls worse. I suppose if you try increasing tramadol it would at least answer some questions and allow you to get some sleep. I also find that my rls gets worse if I don’t get sleep (a cruel irony). Good luck with neurologist.
hi pam just read your post about tramadol you can take (unto 800mg a day)but try to keep it as low as possible I take 50mg at 6.0pm then a pregabalin around 9.0 pm then (I always wake up in the middle of the night) I take 50mg tramadol this takes me through to the morning. But Pam everyone of us is different, you have to find the right combi for yourself.it will take awhile but you will find it.XXXXXXXXXXXXXXXXSUE
Hi Pam,I take 100mg each night plus 1200mg Gabapentin and have done for over 7 years. It has become less effective over the last year and now I have to get up every half hour to relieve the RLS in my arms and legs. I have been on ferrous bisglycinate (empty stomach, every other night, with orange juice) for 5 months and am having a ferritin measure this morning. If under 100 I will try to persuade my GP to arrange intravenous iron. I believe I have tolerance now with Tramadol and would like to try another opiate but need to try the intravenous iron first.
I’ve not been on Tramadol for some years after becoming tolerant and my GP refusing to prescribe more.
The past 4 years I’ve been on 150 mg of Pregabalin and it works 80% of the time. I sometimes have to get up in the night for a 10 minute wander or occasionally I take an extra 50 mg but on the whole I think it’s as good as I can expect. The horrors of ropinirole are still there. I always think if it ceases to work I could have a break and perhaps go onto Tramadol again for a few months. Perhaps I’m being naïve.
I used to take gentle iron every other night but I’m not sure how effective it was and since chemo and subsequent medication my oncologist told me to stop taking it. I never queried why.
So good luck with infusion and persuading your GP to allow it. I find they are not always the most receptive to something they don’t understand. Incidentally have you tried Pregabalin? If gabapentin is no longer working sometimes a switch to Pregabalin may help?
Good luck and I hope you find something that helps. It’s a constant battle.
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