Titrating off of Ropinirole

[climber54]

I've been on ropinirole for 10 years. Got up to 4mg in October 2023 and suddenly it became ineffective. Thank God, I found this site and tge amazing help that you all provide. I began to taper and now I'm down to 1mg. I've been trying to follow the recommendation of 1/2mg every 2 weeks.I also got on as a patient of Dr B. He had me go cold turkey when I got to 1 1/2mg, but I nearly had a nervous breakdown. I became extremely depressed and anxious. He started me back at 2 mg and from there I've gotten to my current 1mg.

But the depression and anxiety are roaring back again. I've also got a cerebral spinal fluid leak that makes it nearly impossible for me to stand up or sit for more than about 10 to 30 minutes. Being upright causes severe 10/10 headaches due to the fluid leak (being addressed by cerebral spinal fluid specialists). I've had 24/7/365 headaches for nearly 10 years.

In any case, my RLS in combination with the leak, are taking a terrible toll on me mentally. If if weren't for my wife, I doubt that I'd have gotten this far.

With her help and the wonderful folks on this site, I feel like I have a chance of getting through this titration to zero.

I've got two primary questions. It feels like I might have to allow more than 2 weeks between 1/4mg drops in the ropinirole. I hate to prolong this suffering but is it normal to have to extend the titration? Or should I try to soldier through.

And, is this depression and anxiety normal? Is it caused by DAWS and the lack of dopamine or is it a side effect of the Buprenorphine that I'm taking? Is there anything that might relieve the mental issues.

Sorry for such a long letter. And thanks so much for all your help.

Chris

[Madlegs1]

It's perfectly normal for the last stages of titration to be absolutely horrific.

Be prepared to take as long as it needs for your body to get used to each new stage of the process.

Be kind to yourself and make it as easy as possible. Give yourself treats. Keep healthy with juices and vitamins.

You are already on an opioid, so that should cover a lot of pain.

I found the Matt Finch site very helpful. He has been through the whole withdrawal experience.

Good luck.

[climber54 in reply to Madlegs1]

Thanks a lot, Madlegs. That sounds about right, especially since each 1/4mg drop is relatively larger than the preceding 1/4mg drop on a percentage basis.

[SueJohnson]

I agree with madlegs1. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. Anxiety and depression can be a result of DAWS or buprenorphine. Have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal.

[climber54 in reply to SueJohnson]

Thanks very much, Sue. Is there any way to determine whether it's the Bup or the lack of dopamine that's causing the depression and anxiety?I did get a full ferritin test.

Ferritin 126

Total iron 127

Binding capacity 252

Saturation 50

Would it be worth trying to get these higher? Any thoughts about the Saturation being high?

Thank you, Sue

[SueJohnson in reply to climber54]

With the saturation that high I would stop taking any iron tablets. I don't know any way to determine if it is the DAWS or the opioid.

[climber54 in reply to SueJohnson]

Thanks Sue. I appreciate the help.

[Merny5]

It is normal. Take it slow and listen to your body. The anxiety and depression are most likely due to the decrease in the ropinirole and not the opioid. I suffered extreme depression and anxiety when coming off of the Nuepro patch.

[Birdland]

I’m so sorry you are dealing with so much. Sounds overwhelming.

I also augmented on Ropinirole. I took it for 16 years and was up to 8mg per night. It took me 3 years to fully come off of it because I can’t tolerate opioids. Dr. B kept prescribing different ones to no avail. Since under his guidance, he had me go cold turkey with ropinirole, replacing it with opioids. Every time I failed with the opioids he had me go back on ropinirole, although at a reduced amount. I tell you this because each time I replaced the ropinirole with opioids (usually for about 5 weeks) I experienced an immense sorrow deep in my soul. Every time I returned to ropinirole the sorrow went away. Eventually I succeeded in coming completely off ropinirole. But when it was completely out of my system, about 4 weeks after last dose, I became EXTREMELY depressed. I was begging the people close to me to give me permission to end my life. I couldn’t function. I tried Wellbutrin and trazadone but the side effects were unbearable. I eventually found my way through this depression but I found it even more debilitating than the horrific withdrawal from ropinirole. After all those years having ropinirole produce dopamine for me, my brain just couldn’t create it on its own. I even tried rTMS treatment but it didn’t change things. I finally decided on a very unconventional way to treat the depression and am starting to feel better. So, I would bet my life savings that your depression and anxiety is from the ropinirole withdrawal.

And, yes, when withdrawing from ropinirole, it becomes more difficult the closer you get to 0. The most difficult time in my withdrawal was the 4 weeks following my last dose.

[DogBella in reply to Birdland]

I had similar experiences coming of the Ropinirole with Dr. B. After trying various opioids I am now on Buprenorphine which saved me. It was hell for an entire year. The 4 weeks after was very bad but now the anxiety has lessened and am starting to feel I have me life back.

[climber54 in reply to DogBella]

Thanks Dogbella,How long after you got completely off of the Ropinirole did you start to feel mentally better? And do you continue to improve?

[DogBella in reply to climber54]

It took about 3 months. After I stopped the ropinirole, I was prescribed Xanax for my anxiety. The first time I took it, I was unsteady on my feet and fell and hit my head. I ended up in ICU with a small brain bleed as I take a blood thinner. Luckily no permanent side effects. Afterward, I stopped the anxiety drug. It took a while to regain my confidence in almost everything I did. Gradually I started to feel better and continue to do so. One of my doctors suggested I start a journal rating my days and night on a scale of 1 to 10. This has helped me to reflect on how my days and nights are improving or to note when I have a bad day or night. I include the time I take my medications. This helps especially if the night is bad as I can see what I may have done differently. This journal has been a big help to me. I look forward to being off my drugs but for now, I am so much better than a few months ago.

[climber54 in reply to DogBella]

Thanks very much for that clarification. I truly appreciate it. It gives me great hope for a positive future.May you continue to improve to full health and vitality. God bless you.

[climber54 in reply to Birdland]

Thanks, Birdland,So happy that you're through the worst of it. What was your unconventional solution?

[climber54 in reply to Birdland]

Hello again Birdland,It's hard to imagine how awful it must have been for those three years. And I'm assuming that Dr B had you try gabepentin and Lyrica before trying the opioids?

He tried all the other meds on me before starting to work through all of the opioids. He says that I'm a "2 percenter" in that almost nothing works for me. I'm sure that you're also in that group. Do you take anything now, or has the RLS dissipated without further meds?

I'm so glad that you've passed through to the being DA-free.

[Birdland in reply to climber54]

Yes climber54, I had a very rough time! I tried gabapentin under dr B but it didn’t work for me. The side effects were so bad at even a small dose that he agreed I shouldn’t continue with it. I have a liver condition that makes it very difficult for me to tolerate medication. The condition doesn’t affect my life in general, only when I try to take prescription meds. Dr B told me I was in the 3% he couldn’t help. My RLS has gotten much better since I stopped ropinirole. I have a script for methadone but can’t take more than 5mg a week. I save it for really bad nights. I get by most nights with hot baths. I recently found a particular strain of cannabis that helps. My nights are not easy and I don’t get the sleep I need. I also have a script for clonazepam for sleep. But again, I can only take it on occasion or else it backfires on me. My unconventional approach to depression is micro dosing psilocybin. It has been a life saver for me. My gp sent me to a doctor to talk about ketamine treatments. This dr also does trials on psilocybin. I asked him what out of the 2 he would recommend. He said hands down, psilocybin, but it was illegal for him to administer unless I was in the trial. He said I couldn’t be in the trial because it was about taking doses much larger than micro dosing and that wouldn’t work for me because of liver issue. I have a relative in Humboldt county who got some for me and I take a small dose 3 times a week. It’s not enough to know I’ve taken anything but works on depression. A Godsend for me. My gp gave me his blessing and told me it’s just a matter of time before it will become legal for doctors to prescribe.

I hope the rest of your journey goes as well as possible.

[climber54 in reply to Birdland]

Thanks. Birdland,Excellent information. I've been hearing a lot about psilocybin treatments for various mental issues. I was worried about getting the druggy feeling. Buy it sounds like the micro doses avoid that problem and still provide relief. So I'll track it down and see if I can get it here in Colorado.

As for your cannabis, I've tried both vaping and gummies. I'm not keen on the vaping due to possible lung damage. Then I ran into gummies with 10mg THC and 5mg CBN. The CBN is remarkably better than CBD or CBG. It is great for sleep.

So I take Wyld Elderberry Gummies 2:1 THC to CBN. I cut each gummy in half and that works very well. I've been using it for about 2 months with no fall-off in effectiveness. You might take a look at that or others that contain CBN. Good luck, and thanks again

[Birdland in reply to climber54]

climber54, thanks for that info on different gummies! I will look into these.

Good luck if you decide to go through with trying psilocybin. I started off with 1 tenth of a gram 3 times a week. I eventually went up to 2 tenths of a gram 3 times a week. Of course there will be a trial and error period where you find what works for you. I don't feel any kind of high from such a small dose. A full "tripping" dose is 3.5 grams. I've read than it resets the brain. And after what DAs have done to our brain, we could use a little resting.

[HipHop1972]

Hello Chris, oh my word you are going through it aren’t you. I’m no doctor and have no medical training and can only go by what I experience with RLS and feel very fortunate that I don’t have any side illnesses that can impact on my RLS. Having a supportive and understanding wife is a real blessing and it’s not easy for them either. Making you go through cold turkey was not a good move by you doctor and could be quite dangerous unless you’re monitored 24/7 in a clinic. You are doing great with the Ropinirole reduction but I did find that there is no definitive time scale between reductions, I’ve had to wait a month or more, and getting down to 1.75 mg level was the most difficult but at some stage we have to make that step forward. Can’t comment on Buprenorphine and if it’s affecting your wellbeing, I know it’s one of the medications that can be prescribed to help RLS but it could be everything that you’ve having to deal with at the moment. I really do hope you can get through this and your spinal issues, you’ve got a lot going on but we have a lot of knowledgable people on the forum who help and guide us.

Best wishes Chris

[4inthemorning]

It’s normal and what I experienced also. It took me completely by surprise the anxiety in the overwhelming sense of fear, and I think that The opioid is probably reducing pain but also having a mental effect also. You’ll get through it I found that meditation really helped Through that period. Similarly, I had an incredibly supportive spouse, such an important piece that not everyone has But we also set some boundatso that I didn’t burn my wife out completely.

[tagaxel]

There is a way to avoid Withdrawal symptoms altogether. You take the solid medication to a compounding pharmacist and have it rendered into a liquid form. You can then titrate down by infinitely small amounts every day thereby tricking the brain into not noticing what's happening. I tried getting off Mirapex/pramipexole and I went into such hell that I ended up on a much higher dose than my original starting point. I have been tapering for over a year now and should be finished completely in two years without the agony I experienced previously.