Hi I have come to some sort of impasse with my battle with rls having gone through the whole gambit with da’s and opioids as we’ll as supplements as well as suffering from augmentation over the year.
I now take one 0.088mg pramipexole and two 75mg Pregabalin two to three hours before bedtime and sometimes if necessary one or two codeine tablets
At least gives me some sleep as I have suffered terribly with insomnia in the past.
I don’t know if I will augment with this regime in the future and would appreciate valid comments
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Hoochybaby
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Interesting mix you are on. Ive recently come off Pramipexole after 20 years, took me about eight weeks to wean off it and towards end simultaneously I started on pregabalin. I’m on 50mg twice a day i take first one about 11-12 o’clock and the other about 9. 30 at night and finding pregabalin to be quite efficient and I am getting some pretty good sleep, so hope it remains that way for a while. I’m interested to know how you came about the idea of taking one low dose and 0.088 Pramipexole together with the 75g x2 pregabalin.
My gp didn’t help because they know nothing about restless legs but my neurologist suggested that I try a low dosage of Pramipexole I kept the dosage of pregabalin relative low because a higher dosage I.e. 300mg gave me heart palpitations
Hi Hoochy, knowing all your past troubles if this regime is working for you then I suggest you stick with it. Sometimes the combinbation is recommended.
If it starts to fail, the only thing to do is increase the pregabalin as this helps more with sleep especially.
Of course there is the risk of augmentation, but I suggest you just take it as it comes. You know the signs and you know what to do.
Hi Hoochybaby, I have posted this before so please forgive the repetition. I too am a pramipexole returnee. I had a horrendous withdrawal 5 years ago after 10 years of an ever increasing dose. I could not find a replacement regime that afforded any kind of coverage. Pregabalin didn’t touch my symptoms even at high doses and I had awful side effects. Opioids caused profound nocturnal alerting (I found it really hard to get to sleep and regularly lay awake all night). I also suffered from opioid induced central sleep apnea when I finally did get to sleep. Also, during the day I suffered withdrawals (I needed the maximum dose to cover symptoms at night) and felt generally miserable and exhausted. I resumed 1x 0.088mg mirapexin about 3 years ago and together with Kratom or temgesic I manage my symptoms and live a fairly normal life. I’m actually working full time again now.
I make sure my serum ferritin remains high as there’s a link between low serum ferritin and augmentation. I have had an iron infusion and take iron bisglycinate regularly. I also lower the dose of pramipexole if I feel it becoming less effective and I take a break from it every so often - maybe every 10 months or so for 4 to 6 weeks (having come off it gradually by splitting/crushing the tablets to reduce dose). I will never increase above 1 tablet.
I do live in fear of augmentation/the system breaking down but so far (3 years in) it is working well. I do also think that I am the opposite of sensitive to certain side effects of drugs and may be more resistant than some to the onset of augmentation.
Hi from Tasmania, Australia. Just read your comments and those of Doings as I do of many of fellow sufferers of the accursed RLS. I have been on Pramipexole since it became here, probably about 20 years ago. It served me well for the first 10 years. Augmentation has rapidly increased over the last four or 5 years so that I am now taking 2.5 mg of the stuff every night and it is failing to "stop the twitching." I was advised by a new neurologist to not increase the intake of the Pramipexole any more due to all the known side effects. I noticed that I find it easy to go to the shops every day and not buy just what is needed but always things that I would like. I think that I am now managing that better and have eliminated all thoughts of shoplifting.
The neurologist has given me Gabapentin 100 mg with one to b e taken in the morning, one at midday and 2 at night. I do not feel that they are having any effect on the RLS but are helping with inflamed nerves in my left foot. Should I be increasing the dose?
My GP declined to five me a ferritin level blood test. So I am wondering about taking the health food shop tablet for ferritin.
It is now evening and I am keeping the RLS at bay with a large dose Magnesium Malate chewable tablet. I take 1.5 mg of the Pramipexole later in the evening and a further 0.5 when about to go to sleep together with 2 Gabapentin 100mg tablets just so I can get to sleep. I am just wondering what I can take to try and wean myself off the Pramipexole and still get some sleep without the RLKA disturbing my life. It certainly gets depressing with constantly thinking about the RLA coupled with the fact that it is not really working.
What can I do next to try to stop the management of RLS taking over my whole life?
Hi Sappington I sympathise with your situation I’m afraid I’m not qualified to advise you but you could ask Manerva who is very well informed I have suffered like yo for many years and augmented on Pramipexole and it’s not easy weaning off this drug you seem to be taking a high dosage of Pramipexole and would have to come off this drug very very slowly
There are other drugs you can take to counter the effects of withdrawal but as I said I’m not qualified but others on this forum can help
Several times to the USA even John Hopkins short version.
I did a clean switch from all my horrid
medications onto 2 mg buprenorphine brand name Australia SUBUTEX not to be confused with Suboxone.
Subutex is nearly impossible to get in Australia luckily I have however others have been successful in obtaining the micro dose version TEMGESIC.02 mcg
most people take between 2 and 6 as a regular dose others need a high dose when in severe augmention that is where SUBUTEX is best
Subutex has a 24 hr half life -milligram
Temgesic 5 hr half life -micrograms.
At night now i take 2 mg Subutex sublingual under the tongue.
Nothing else required.
If you message me your email address
I can send you my medical letters when I get back from falls creek Vic.
According to the Mayo Clinic website the most effective treatment for RLS in the last 300 years is codeine. They say to start at 30 milligrams and increase it to 60 milligrams. Instead what I do is I start 16 milligrams and go up to 24 milligrams. Over three months, the efficacy declines so at that point I take a two week holiday, which is painful. Thing I do is run in place for 13 minutes just before going to bed. And if I get up in the middle of the night, I do that again. That helps me sleep much better.
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