Some of you are familiar with my story so far so I will make this brief.
Three years ago I was taking 6mg Pramepexole. It took me nearly three years to taper the dose down to 1.25. My idiotic Neurologist said he would no longer treat me unless I stoped taking Pramipexole. He writes my prescriptions for tramadol and that was what I was taking to control the RLS whilst tapering the Premipexole. I decided to take his advice.
I took my last pramepexole nine weeks ago. (I can't even remember how to spell it!) It has been a terrible experience with nausea followed by anxiety/depression, chronic insomnia and RLS off the scale.
I am very happy to say that I am starting to feel a little better. I wouldn't call it normal exactly, I think I forgot what that's like. If anyone out there is contemplating going cold turkey of a DA medication like Premipexole I would strongly advise against it. I have had severe RLS for many years but nothing in my experience comes close to the living hell I have been in for the last 9 weeks.
I consider myself very lucky to be alive.
I am now taking 150mg pregabalin and 7.5 mg zopiclone and300mg tramadol.
Here are the questions I am now contemplating:
1). I am am taking 300mg of tramadol. Is this an unacceptably high dose?
I have to wait another two weeks before I can get a referral to a different Neurologist and (hopefully) a prescription for Methadone or Buprenorphine (thank you all for your advice on this).
2) Am I going to be horribly addicted to tramadol?
3) Will I get my RLS back if I try to taper the dose?
4) Should I just stay at 300mg until I can transition to a better opioid? (3more weeks)
5) Would it be best to ask for Buprenorphine without the Nalaxone?
I am still quite ill but the relief is huge and the thought of more suffering fills me with horror.
Any advice on these difficult questions would be very welcome.
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welschrispy
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Yes 300 mg is a high dose. According to the Mayo Clinic Algorithm 200 mg is the top of the range for an effective dose. A common approach is to decrease the dose by 10-25% every 3-7 days. . A slower approach would be decreasing the dose by 10% to 25% every 1 to 3 weeks. But your best guidance should be from your doctor and it should be done under the supervision of your doctor. The advantage of the naloxone is it helps prevent constipation.
I am so glad you are feeling better. I know it has been a long hard journey for you.
Well done for getting this far off such a criminally high dose of Pramipexole.You will feel depressed, traumatised and not yourself for quite a while. Withdrawal is indeed hellish.
But, with each passing day, you will feel a little better. Hold on to that.
Don't reduce anything until you see the neurologist. Hopefully you will get methadone or Buprenorphine and you can make a straight switch from tramadol without any withdrawals.
Does the depression from tapering level off too? I am just starting my taper from Pramipexole .50mg and worry about getting more depressed as I already suffer from depression. I plan to shave a little off each dose and weigh on a jewelry scale. Hope this is a safe way to do it. I question how much to taper at a time. Any advice?
The general advice is to reduce by half a 0.125 pill every 2 weeks. So, ask for the smaller size pills first.The depression may take some time to settle. Everyone is different, but dopamine agonists have an effect on dopamine levels in the brain, so reducing it will affect mood.
I have never experienced depression or anxiety, but I did after withdrawal from Ropinirole. I had PTSD for around 2 years.
I didn't take anything though, just tried to find the right combination of meds to control the RLS. All anti depressants trigger or worsen RLS, so it can be difficult for those who experience depression AND RLS.
Safe options are trazodone and Bupropion, but they may not suit everyone.
And make sure your serum ferritin is above 100ųg/L, preferably 200ųg, as that can help reduce augmentation and some of the withdrawals.
Stay strong. Once off Pramipexole, you'll realise how severe your RLS had become.
Congratulations on your progress so far. My only advice in on the buprenorphine. Naloxone is going to be in most formulations, mainly because the drug is primarily used to help with addiction and the naloxone lessens the ability to abuse it. I’ve heard that it reduces constipation, but didn’t find that to be the case for me. I have much less on the Butrans patch that has no naloxone than I did with Suboxone that includes it.
Generally I would advise starting with the sublingual pills or strips. There is some adjustment period involved with finding the optimal dose, and the sublinguals allow you to tweak the dosage more easily. If the side effects still bother you after a month, then you might consider the patch. Most people have reduced side effects on it, mainly I believe because the dosage can be lower due to absorption differences.
hey, you are doing great and glad you can feel some improvement. From everything people have said here, it will get better as your body adjusts. stick with what you are doing and be kind to yourself, including what your expectations are of a) success and b) your progress. You can quote me to me when I update with my own trials as I am on the start of the journey to quitting pramipexole.
Good luck with your own journey and I think be kind to yourself is great advice and quite perceptive. The last thing you need while coping with a stressful change is your own mind adding criticism. All the best.
Ahh Kejimkujik! you are so kind and I thank you for your encouragement. Do you have a plan? Record sheets are very helpful if only to let you see there is improvement even in your darkest times.
Go slow ,really slow and don't be afraid to relapse a little now and then. When it get's bad, hold on the the time it was good(or at least better) But when it is good celebrate it. Put some good music on loud and dance naked around the room with your undercrackers on your head.
Have a mantra you can repeat over and over when you can't sleep and you haven't slept for days. I am not Christian but for reasons beyond my comprehension I found myself repeating the words of Solomon: I didn't even know I knew them.
'Though I walk through the valley of death I will fear no evil, for though art with me, the power and the glory, for ever and ever..amen.."..repeat. This is part of the older way of being in the word. it is of course Christian but I believe it is also a full on Majic incantation. It gave me enormous relief in the most terrible circumstances. Solomon must have been quite the guy! I felt the power of those words and they connected me to something that is greater than me and to the best in me.
Don't forget...You will get through this ..you really will.
Thank you so much for your kind words and your encouragement.
Have you begun quitting Premipexole? I wish you all the luck and all the love (the chaste sort of course) in the world. Despite all the evidence to the contrary I believe there still is enough love for all of us. ( If only.......)
Keep in touch with the good people on this incredible web site. They have seen me through the darkest time of my life.
It is a trial, and no doubt about it, but if I can do it so can you.
Here is your advice back at you..... be kind to yourself.
You will get through this and remember you are not alone.
Hey Welschrispy, I will only add one thing to all the helpful comments you have gotten here.
You have come so far on what has been such a horrible journey and you have survived. Be kind to yourself is good advice, but also be proud of your fortitude and strength!
congratulations welschrispy! The worst part is over. At some point when I was reducing my Neupro patch, I made a straight switch from tramadol to Oxy. I didn’t have any problems. Good. Luck!
Thank you Merny5. This is exactly what I need to know because my doctor knows very little. If and when you have time could you please tell me about the process?
Did you just swap over medications or was it gradual?
How many mg of tramadol to how many mg oxy?
Are you happy with the oxy? It hs such a bad reputation. Are you concerned about addiction?
Sorry this is a bit personal but I would be very happy to receive whatever information you feel OK about giving Many Thanks
It’s not too personal if I can help you. It took me about 19 months to get off of 9 mg of Neupro. I was also given tramadol, 100 mg by this horrible neurologist who prescribed such a high dose of Neupro. During this time I found a fabulous neurologist who switched me from tramadol to Oxy, 5 mg. The 5 mgs didn’t really help at all. I got up to 15 mg by the end of the tapering period. My neurologist suggested I switch to methadone, 10 mg. That is my currently dose. I have been taking methadone for I think about a year and a half. It works very well at controlling my symptoms. I have no fear of addiction because the dose is small. I hope I answered all of you questions.
Hello Merny5 Thank you so much for this information. Yes indeed you have answered my questions and I feel a bit more optimistic about my future. Or at least I feel like I have a future! Spring finally arrived here on the West coast of Canada. It's hard to believe the mess the planet is in when everything bursts into life. Many thanks again.
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