Help with DA augmentation recovery - Restless Legs Syn...

Restless Legs Syndrome

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Help with DA augmentation recovery

davchar23 profile image
16 Replies

I have had a considerable amount of help from Joolsg and several others on this topic but I would now like to tell everyone where I am up to currently and ask for help going forward.

I stopped DAs 3 months ago after suffering from augmentation. After a period following neurologist's advice to use higher pregabalin (up to 600mg/day) and then oxycodone and I am now going through a very bad patch on 25mg/day oxy (5x 5mg tablets 3 of which are before bed) and a reducing pregabalin regime (now at 150mg once a day before bed.). The higher pregabalin dose caused very bad balance side effects and was reduced quite quickly

I seem to be getting some relief from RLS at 25mg/day Oxy but very bad side effects. My symptoms are very bad mobility, nausea (on waking), poor balance and weakness in thighs and legs generally. Has anyone else found these to be augmentation/withdrawal side effects and if so how long do they last?

Best regards

Davchar

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susiehandley profile image
susiehandley

Really sorry to hear the problems you are having with your meds. I too suffered from augmentation on DA's and also with Pregabalin after maxing at 600 mg. I was recommended to take Targanact which is 5mg Oxy and 2.5mg Naloxone (opiod/anti opiod). It took e 3 years to obtain authorisation but finally in March this year I started this drug. I had reduced the Pregabalin and now take 2 Targanact every 12 hours with 350mg Pregablin currently. I have a prescription for 450mg if needed but since moving across to Targanact, I haven't needed the higher dose. The main difficulty is that I do get drowsy, but as I am retured, I am able to have an afternoon nap. My RLS is now under control and I would recommend Targanact to anyone who has maxed out on other prescribed drugs for RLS. This is in the UK, in the USA I believe there is another alternative, I can't remember the name.

davchar23 profile image
davchar23 in reply tosusiehandley

Susie, Thanks for your reply and details of your meds. I am pleased for you that your RLS is under control with Targinact. It seems we are in a similar situation. Since my post my GP has decided to reduce my Targinact (Oxycodone/nalaoxone) from the 25mg/day (5 x 5mg) down to 20mg due to the quite dangerous side effects of the higher dose. Although the 25mg/day (15mg before bed) was giving some very some slight RLS relief I could hardly stand up let alone walk.

If the 20mg Targinact does not, as expected, significantly improve my RLS then he advises a switch to Burenmorphine but only after gradually reducing the Targinact to 10mg/day before switching.

What side effects did you have with Pregabalin at the higher doses and I assume it did nothing for your RLS? Is drowsiness the only side effect you have with 20mg/day of Targinact? I assume you refer to 5mg tablets of Targinact and do you find that a 5mg tablet "lasts" for 12 hours.?

Do you think it is the "mix" you take of Targinact & Pregabalin that provides the RLS relief and therefore you cannot come off the pregabalin?

Kind regards

David

susiehandley profile image
susiehandley in reply todavchar23

The drug is a 12,hr release and to get the benefit I need 2x5 mg a day with pregabalin as a boost at night.

What worries me about what you are saying is that you’ve also had a very high dose of pregabalin and now oxy too. The trouble then is that the RLS breaks through these so called barriers. It was always about finding the right balance between the two. As the Targanact alone does not resolve my RLS I take pregabalin to give it a boost. I e had severe RLS in my arms and legs for 30 years and now finally I can sleep at night. So important for my mental health. I’m not entirely free, I do have to take the meds at the right times so I take Targanact at 9am and 9pm then pregabalin at 9pm too. I also take ferrous Fumerate (iron) at 9pm to help with absorption. The best way forward with RLS is to go cold turkey for as long as you can bear it (even if it’s only a few days), but not with the oxy, reduce gradually, then start again on lowers doses until you find the right balance. That would be my suggestion but you’d need to talk to your prescriber. They can give you something to help with withdrawal. Good luck.

davchar23 profile image
davchar23 in reply tosusiehandley

Susie, If i understand you correctly you mean stop the pregabalin fully but reduce the oxy gradually? As i am about to reduce the pregabalin to 100 mg/day do you think that might be a reasonable base on which to start the balance trials

Regards David

susiehandley profile image
susiehandley in reply todavchar23

It might, I don’t know. If it doesn’t help after a week I’d reduce it again till you’ve stopped then go back again after a couple of weeks, no sooner. I’m also concerned about your high levels of oxy. Is that coming down too? I only know this from my own experience.

davchar23 profile image
davchar23 in reply tosusiehandley

My GP has told me to reduce oxy to 10mg/day (2xx5) and then he will prescribe bupenmorphine and then continue to reduce the oxy to zero. So that we do not change too many things at once he told me to keep the pregabalin at 150mg (1x150 at night). i will let you know how I get on but at moment struggling badly with oxy side effects as justr educed to 20mg/day Thanks and regards

David

susiehandley profile image
susiehandley in reply todavchar23

Good luck David, I hope it all works for you.

SueJohnson profile image
SueJohnson in reply todavchar23

To stop the pregabalin reduce by 25 mg every 2 weeks. Any faster and you risk withdrawal effects.

davchar23 profile image
davchar23 in reply toSueJohnson

Sue, By withdrawal effects form reducing the pregabalin faster do you mean RLS.

My problem is that my GP prescribed 150mg Pregabalin tablets and I have for last two days taken one of those at bedtime. I have not had any sleep until 3/4am because of RLS/ Do you thin k i have reduced too quickly and should i go back onto 200 until i can get some small tables?

Davchar

SueJohnson profile image
SueJohnson in reply todavchar23

The withdrawal effects are insomnia, headache, nausea, anxiety, diarrhea, flu-like symptoms, pain, excessive sweating, dizziness, confusion, and palpitations. You are having insomnia which can also be caused by your opioid withdrawal. I would go back to the 200 mg and that will tell you which one is causing it.

davchar23 profile image
davchar23 in reply toSueJohnson

Sue, Tks and will go back to 200 mg of PGB which i will take as follows:- 100mg @ 8pm and 100mg @ 10-30 pm The withdrawal symptoms sound like mine. Thanks as usual

Davchar

davchar23 profile image
davchar23 in reply toSueJohnson

Sue,

Since we last exchanged comments I have managed to reduce my pregabalin to 150mg one a day (in late evening) but still take 25mg/day oxy. The oxy (5x 5mg Targinact) is taken at 6pm. noon, 5pm and then 10mg at 11pm

My main problem with the reduction seems to be dizziness and possible insomnia. I say possible insomnia because when I first go to bed I cannot sleep not so much from the RLS symptoms which I felt earlier in my "escape from augmentation" but from different symptoms mainly a gradual numbness in my feet and calves (RLS or not?) which is removed by walking and stretching. Usually after a couple of "get up and walk" events i get to sleep about 1-30-2-30am.

I have a GP appointment later this week and I need to have a clear case to put to him in which I understand where I am up to. i will be asking for 25mg Pregabalin tablets and a possible change to Buprenorphine

I would very much appreciate your comments . Thanks

Davchar

SueJohnson profile image
SueJohnson in reply todavchar23

A numbness in one's feet and calves is experienced by some who have RLS but if you never had this symptom when you weren't taking your two medicines, I doubt that that is it, although I suppose it could be. The buprenorphine will block the oxycodone you are taking so it will be ineffective. Other then that I am not quite sure what to tell you.

davchar23 profile image
davchar23 in reply toSueJohnson

Dear Sue,

Thanks your reply. I did have similar symptoms before so i suspect it is still RLS.

I understood from Joolsg that Buprenorphine should be used if Oxycodone didn't stop the RLS 3/4 months down the line from DA augmentation? When you say block you mean Buprenorphine could be taken before I reduce the oxy?

kind regards

Davchar

SueJohnson profile image
SueJohnson in reply todavchar23

It is best to slowly reduce the oxycodone first since the buprenorphine blocks the oxycodone you could suffer withdrawal symptoms from the oxycodone. However there are some studies that say you can switch directly without tapering off first. You might want to message Joolsg and ask her as she is more knowledgeable about opioids

davchar23 profile image
davchar23 in reply toSueJohnson

Sue, Thanks and will do

Davchar

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