Help! My meds aren't working

[jy13131]

I am a patient of dr B's. I have been blissfully medicated for the past year. After going off requip due to augmentation, I started using a combo of methadone, oxycodone And tramadol. I have used very low doses with just about 100% effectiveness. Two weeks ago, out of the blue, the legs got bad with a vengeance. I have not been able to get them under control again! I am so scared that one day I will have to take debilitating amounts of opiates of this is how this rolls. Has anyone has an experience like this? And does it ever go back to the status it was before? Or does it progressively get worse? I am grateful for the break I had. But I'm not feeling grateful to have this torturous disease at the moment:(

[ViewsAskew]

I am a patient of dr B's. I have been blissfully medicated for the past year. After going off requip due to augmentation, I started using a combo of methadone, oxycodone And tramadol. I have used very low doses with just about 100% effectiveness. Two weeks ago, out of the blue, the legs got bad with a vengeance. I have not been able to get them under control again! I am so scared that one day I will have to take debilitating amounts of opiates of this is how this rolls. Has anyone has an experience like this? And does it ever go back to the status it was before? Or does it progressively get worse? I am grateful for the break I had. But I'm not feeling grateful to have this torturous disease at the moment:(

A few months after starting methadone, I needed more. Then about 10 months later, it wasn't working enough - more again. This happened regularly until I decided I'd soon max out and I didn't want to be on large doses.

I tried stopping them and subbing tramadol (and getting no sleep for a few weeks) to "reset" my brain. It didn't work. I tried using other opioids - I couldn't tolerate them. Finally, I chose to alternate one night of opioid with one night of pramipexiole. (I augmented in 7 days when I first took it, so it was hard for me to try this.)

I used this for a couple of years. Eventually the pramipexole caused depression and I couldn't tolerate it, but I'd absolutely recommend it - even now I take a half dose of pramipexole every other day - so far no tolerance (it's almost a year now, and no increases have been needed). It's very unlikely to augment and just about impossible to need higher amounts of opioids. The other alternative is to stop the opioid every few weeks for a few days or a week. The hard part is finding something else to use. But, if you stop it regularly, you shouldn't have tolerance develop.

But, before you go there - just making sure nothing else could be causing this. I imagine you did your homework and looked at all the factors, but just in case - medications, schedule, hormones, pregnancy, other conditions - and so on could all be making it worse, too.

Hope you find a solution soon - it causes so much anxiety when this happens.

[jy13131]

Wow...none of those options sound terribly pleasant. I am peri menopausal and my hormones are changing all the time. I went on birth control to try to regulate them for one month. Then I went off. The rls started shortly after that by about 2 weeks. I also had a virus that gave me a fever for one week but the rls started 2 weeks before that. I reintroduced processed sugar after none for a few months. Then I tried stopping again but once the cat is out of the bag it's hard to stuff her back in!! (The cat being my rls). I also have lost some weight over the last 3 months. I remember thinking "hmmm, if my metabolism is kicking into a higher gear, am I going to go through these meds faster?" Anyway.....I have to go to work m-f so to be in withdrawal for a week while working sounds pretty bad. I have been asking if anyone has success with weed as it is legal where I live. But I need it to stop my rls, NOT just make me sleepy and give me the munchies. I still don't even know what is considered a high dose of methadone. Last night to sleep though I has to take 20 mgs which is 4x my usual. I just think its weird the pattern here. I mean if it is a " tolerance" issue, that would usually happen gradually. There was nothing gradual about this. BAM!!!!! Was more like it. I appreciate your response. I will be making a dr B appt to see where to go from here.

[Polar Bear]

Others will advise better than I can regarding your meds, dosages and tolerance.
But what does jump out at me is that you were on the birth pill two weeks prior to the WED/RLS appearing again.
Many members have commented on hormonal changes affecting their symptoms and especially as they arrived in such a sudden manner.

[ViewsAskew]

Yeah, 4x doesn't sound gradual! Mine did appear relatively suddenly, but I could control it with a small increase - say 2.5 to 5 mg. 15 additional mg is quite a bit more.

Sounds like something is definitely going on - an perimenopause does complicate things. But, again, as you said, this is a large increase. I am perimenopausal - I usually need 2.5 to 5 mg more for about 8-9 days of my cycle. I already take 20 mg. Adding 2.5 isn't much of an increase compared to 4x.

Good luck with your appointment and let us know what happens.

[veldon7]

I am going through Menopause also, I had to start taking Prempro(hormone) because I am having alot of hot flashes and Migraines. I've been taking the Prempro for about 3 wks and I'm sure it aggravates my legs, but I haven't had as many migraines, which is a big relief! So far it's not really helping the Hot flashes. I am taking Gabapentin and 10 mg of Oxy. and .5 of Mirapex, plus Inderal for BP and Migraines, so I feel like a Zombie most of the time. I have a hard time driving to work in the am. Ann do you have PLMD? There was another thread that talked about Oxy. not working as well if you have PLMD. I do have PLMD, and I don't think the Oxy is doing much for me. I was thinking I could try what you do, rotating Mirapex and Oxy10 mg, but I don't think I would make it at night without Mirapex every night. This is driving me MAD!! I finally got some Oxy, and it doesn't help much so far. If I do rotate, I'm sure I would have to have more Oxy. maybe 20 mg. How many mg of Pramipexole and Opioid do you take?

[ViewsAskew]

I am going through Menopause also, I had to start taking Prempro(hormone) because I am having alot of hot flashes and Migraines. I've been taking the Prempro for about 3 wks and I'm sure it aggravates my legs, but I haven't had as many migraines, which is a big relief! So far it's not really helping the Hot flashes. I am taking Gabapentin and 10 mg of Oxy. and .5 of Mirapex, plus Inderal for BP and Migraines, so I feel like a Zombie most of the time. I have a hard time driving to work in the am. Ann do you have PLMD? There was another thread that talked about Oxy. not working as well if you have PLMD. I do have PLMD, and I don't think the Oxy is doing much for me. I was thinking I could try what you do, rotating Mirapex and Oxy10 mg, but I don't think I would make it at night without Mirapex every night. This is driving me MAD!! I finally got some Oxy, and it doesn't help much so far. If I do rotate, I'm sure I would have to have more Oxy. maybe 20 mg. How many mg of Pramipexole and Opioid do you take?

I have PLMs, yes, both during sleep and while waking. They were much worse then the WED originally. Now they are about the same. I take methadone and my husband does not see me moving any longer, except for more exaggerated hypnic jerks - for some reason they are stronger when I take opioids. But they are not related to the PLMs, so I don't worry about them!

So far, nightly rotation is the only thing that works decently well for me. I take .25 mg of pramipexole over a 4-6 hour period, taking about .08 every 1 hour. That gets me through the worst of the WED at night and during sleep. I took up to a full mg of pramipexole while augmented - stayed off over two years, then needed much less. When I take rotigotine, I use a 2 mg patch at about noon - that gets me through the day and night. When I use an opioid, I take 25 mg of methadone over a 10 hour period, starting in afternoon. I usually get up between 11 and 1 PM - and start my first dose of opioids about 4 hours later and my last dose just as I go to sleep. It was trial and error to find out what worked best for me.

[veldon7]

Thanks, I was just wondering since people were saying that opioids may not work as well for PLMD. I am taking 1-2 Oxy 10mg in the evening and still having to take .5 of Mirapex. I guess the Oxy alone won't work for me, I am taking the Oxy for neck pain, I have a herniated disc and Facet joint problems and degenerative disc.

[ViewsAskew]

Thanks, I was just wondering since people were saying that opioids may not work as well for PLMD. I am taking 1-2 Oxy 10mg in the evening and still having to take .5 of Mirapex. I guess the Oxy alone won't work for me, I am taking the Oxy for neck pain, I have a herniated disc and Facet joint problems and degenerative disc.

The oxy may work for you alone, but you won't know until you completely stop the Mirapex for at least 2-4 weeks. You may have to up the oxy to get through it, though.