This is both a bit of an update as a request for some guidance.
I've been on Temgesic since last November when it made a HUGE difference to my life - the RLS was gone and I slept! However, even though I upped the dose to 1.5 tablets and then 2, the jerking of my body, etc gradually came back. So I've decided to come off Temgesic for a few months and return to the dreaded DA route. I've ramped down the Temgesic and ramped up the Ropinirole from 0.25mg to currently 0.75mg. I would have thought that this level would be sufficient for the first few weeks at least but it is not working well with the last two nights being rubbish. I had a meeting to attend this morning and so I gave up in the middle of the night and took a half Temgesic tablet. I then managed to sleep until the alarm went off.
So, what level of Ropinirole should I expect to use? I'm only going to be on it for hopefully just 3 months before I revert back to Temgesic and so I doubt that I will face augmentation. I should also note that I had variously been on Ropinirole and Pramipexole until last November, but it should have washed out of my system until then.
I look forward to hearing from you
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RLSofManyYears
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You probably don't want to hear this--- But you are doing something that is utterly mad.Leaving the gold plated option of Buprenorphin to return to the certain HELL of dopamine agonist medication is just " not on, old chap".
Please, please, please take a moment to think this through.
I've run into two problems with the Temgesic: 1. It is not as effective and 2. upping the dose to 2 tablets (400mcg) is giving me headaches, trouble relieving myself and other opioid self effects. I do not like going back to a DA but if it means that I sleep then it is worth it until I can return to a Buprenorphine.
I think that pramipexole is the worse of the two. I've also been on 300mg Pregabalin for several years now and so that will not cut it in helping me. My plan is to get the Temgesic washed out of my system and then return to it. See my reply to Madlegs1 about the Temgesic.
Ah, I tried the patch years ago and it did not work for me. Surely even at 1 - 1.5 mg for a couple of months ought to be fine? I really want to keep it to low levels to avoid any chance of augmentation.
I take 50mg Iron Bisglycinate and 100mg Vitamin C every second night. I've done this for several months now but there's not been any improvement. I've not been able to get my iron levels checked lately due to the Covid. And I'm an alcohol-free zone, low in caffeine and salt.
The iron is good. It does take months and if you can get your ferritin to 100, it has a 50% chance of helping.
Aggravating factors includes other medications you may be taking. It may also include diet and gut health.
Inflammation is a factor in RLS. You may not necessarily be aware of it, chronic or sub-clinical inflammation is not always obvious.
An excess of carbohydrates in the diet is not good for anybody. Some people with RLS find they're sensitive to such things as gluten orlactose. An anti-inflammatort diet can help.
If you have SIBO or IBS or H pylori bacter or any inflammatory bowel condition it needs treating.
Probiotics may help healthy gut flora (good bacteria).
These are long term things Chronic inflammation may take years to develop and years to reverse.
"Triggers" are quick acting short term factors and can be reversed quickly.
Alcohol, nicotine, caffeine and refined sugar are all triggers. MSGis a trigger for some. There are others, you'd have to keep a food diary, i.e. what you eat each day and what your symptoms are like, to see any connections.
Hi there, I have also gone back on a DA after a bad spell of Gabapentin. But for me, it is the combination which works so well. I take 0.26 mg of Prolonged Release Mirapex plus 2 Co-dydramol or co-codamol (10/500 each). To prevent constipation I take soft prunes with my breakfast and in the evening 1high strength Senokot. I am also on 0.5 Clonazepam to help me sleep. I might be a bit restless in the evening but generally sleep for 8-9 hours. Instead of Mirapex, the Rotigotine Neupropatch up to 0.3 mg might also work in this combination. This has worked for me for nearly 18 months. From one RLS for many years to another: Good luck.
I'm sorry to hear you are suffering. And empathise. You seem to be experiencing tolerance of the Temgesic.I use Tramadol and the same thing happens to me probably once every 15months.I take a drug holiday of a month and then it kicks back in effectively. This has meant I've been able to keep the dose low.I'm going through a break now and am extremely sleep deprived. But for me this regime works. If you haven't augmented on a DA before it may be ok for you to use Ropinerole for a month or so to facilitate a drug holiday from Temgesic.Huge good luck.x
Basically it means that the symptoms start to appear earlier in the day and also get worse. Hence you are often told to increase the dose which just makes matters worse...
My neurologist just prescribed C/L to add to the mix. When I expressed concerns about the DA’s (side effects and the withdrawal problems of stopping them,),he said “there’s no withdrawal, if you want to stop them, go ahead and stop them “.
I’ve suspected him to be a bit behind the times but now I know he’s really clueless!
I returned to pramipexole two years after a traumatic withdrawal following years of increasing doses. It is certainly an unusual course of action. I did it for similar reasons to you - a variety of problems with other treatment options. Patches do not work for me either - I notice an appreciable number of people who report that patches are less effective than oral dopamine agonists against rls symptoms.
I take a low dose (0.088mg) and I never increase it. When I first returned to pramipexole this was enough for my symptoms but now I need kratom or an opioid (in a lower dose than if I wasn't taking the pramipexole) to deal with them. It's not a course I would recommend to many due to the risk of augmentation. I also suspect that dopamine agonists cause permanently damage to dopamine receptors.
If you do return to ropinerole, I would suggest that you start with half of 1mg. In your shoes, I would not contemplate increasing above 1mg in any circumstances. Use another treatment drug to supplement if this is not sufficient. A lot of sufferers report that a cocktail of drugs at a low dose is more effective than relying on a single treatment.
Some people seem to be much more susceptible to augmentation than others. There is some evidence that keeping serum ferritin levels high helps protect against augmentation and, in your shoes, I would get my serum ferritin tested asap. If it is below 100, it would be worth agitating for an iv iron infusion to help avoid the worst impact of resuming a dopamine agonist. This may also help with your rls symptoms generally (there is about a 50% chance of this). Good luck. I would be interested to hear how you get on.
Thank you for this, I'm glad I'm not alone in this journey. Tonight I'm going up to 1mg and as you mention, I don't want to go any higher. I've been on 0.75mg for the last week and it is not enough. I don't really want to risk even a low dose of Temgesic until another three weeks has passed. I've also decided to go down the route of trying herbal stuff for SIBO. It should arrive in the next few days and I'll let everyone know if it works at all.
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