Keep weaning my ropinirole or wait for doctor's advice?

[ddkjohn7]

Let me start by apologizing for the lengthy post. I have been taking ropinirole/requip for many years, I want to say around 10. I started with .25mg in the evening before bed and over the years worked my way up to .25mg at noon, .50 mg at 5PM, and 1mg at 9PM. The .25 mg at noon was added when I retired from work and was more idle in the afternoon and my symptoms would not allow me to sit and read a book. This combination was working fine until about two months ago when I started waking up around 5AM with symptoms. My neurological suggested we increase the dose and because I have been educated through the foundation on augmentation, I refused. She added gabapentin and told me to take it with each dose of my ropinirole. The gabapentin made me very lightheaded and felt like my head was in a fog so I stopped taking it. I decided it was time to get off the ropinirole entirely. I printed off the Management of Augmentation and RLS document and sent it to my new GP to read before my annual exam. I also made an appointment with a Quality Care Center in August, which was the earliest opening. When I went to see my GP two weeks ago, he was totally on board with working with me on getting off the ropinirole. He prescribed 50mg of tramadol. I have been slowing weaning myself of the ropinirole and I am down to .75mg at 9PM. My legs do get restless in the afternoon and again in the early evening, but I just keep myself busy to calm them. The .75mg of ropinirole takes effect about 10PM or so and I am able to sleep until about 3AM. I then take 50mg of tramadol and that allows me to sleep until about 6:30AM. I am very anxious about the next reduction of ropinirole. Should I stay at this level until August when I can get the advice of the doctor at the Quality Care Center? Or should I reduce the ropinirole and increase the tramadol? My biggest issue right now is that when I take my ropinirole my symptoms get much worse for about an hour before my legs finally start to calm down. Any advice from those who have gone through this process would be greatly appreciated. I can’t tell you how much just reading about other people with the same struggles has helped me. Thank you all for sharing.

[Rustsmith]

Two suggestions: First, call your GP and ask to change from Tramadol to Tramadol ER. The ER form is more expensive but lasts for 24 hrs. Regular Tramadol has a half life of only 5 to 6 hours.

Second, keep going down on the ropinerole dose if you can. That is what the QCC will tell you to do, especially if you can get Tramadol ER.

Finally, be aware of the fact that Tramadol is both an mild opioid and also an anti-depressant. Most doctors are not familiar with the anti-depressant properties since the FDA refused to approve it as an anti-depressant but when it is metabolized by the liver, half of the tramadol molecule becomes the opioid and the other half is essentially the same as the SNRI anti-depressant Effexor. This will eventually be important because you MUST taper anti-depressants over a period of a few weeks whereas opioids can safely be stopped in just a day or two. Failure to do this results in a condition known as Anti-Depressant Withdrawal Syndrome which causes symptoms such as PTSD, nightmares, migraines, etc and lasts for over 90 days. I learned this the hard way.

[Polar Bear]

Well done on reducing your ropinerole down from 1.75mg to .75mg. Our RLS experts believe that 1mg is the daily max to try and avoid augmentation. I weaned myself off 5mg daily ropinerole (my doctor knew nothing about RLS and kept increasing the dosage). It was with the support of the members here that I made it, but took 10 months to do this and with the support of cocodamol and pregabalin.

During the times when my symptoms were at their worst I would soak my feet and lower legs in a bucket of icy cold water, splashing the water up as far as my knees. Takes your breath away at first. It would take about 15-20 minutes but eventually the symptoms would fade away and there would be a window where I could get a nap, or even to sleep for a few hours. Some people find that hot water works better for them, running the shower head over their legs until the symptoms will fade.

Again, well done on your reduction of the ropinerole, It will be a wonderful achievement when you have come off it altogether.

[ddkjohn7]

Thanks for the reply and encouragement. So when I go down to .50 mg should I also increase the tramadol? Assuming my doctor will change to the ER,
when do you suggest this be taken? I am currently taking 50mg when I wake up around 3AM. Should I maybe take 25 mg with the 9PM dose of .50 ropinirole? Thank you.

[Rustsmith]

You don't want to increase the tramadol dose until you talk with your doctor. You only have a limited number of pills and you will not want to run out of them too early. As for a dose change when switching from plain tramadol to the ER form, that is up to your doctor.

As for the timing of the tramadol, since taking it when you wake up during the night allows you to sleep until 6:30A, that is probably find for now. Taking it at bedtime would just mean that it would run out during the night. But switching to ER addresses that problem and you can take the ER pill anytime you want since it works for 24 hrs. As you wean off of ropinerole, you will probably want to start taking it in the early evening or late afternoon so that you can fall asleep at your normal time.

And I said it before but I will say it again, be aware of the fact that tramadol ER is much more expensive than plain tramadol. The increase in price isn't as drastic as that of ropinerole ER or pramipexole ER, but it is definitely NOT cheap (like the other opioids).

[ddkjohn7]

I am away from home until next week. I messaged my doctor to get the Tramadol ER but decided to try to go to .50 ropinirole anyway with the regular Tramadol. The first night was fine. The first hour after taking the ropinirole is the worst. My legs get very restless. Once they calm down I was able to sleep for about 3 hours. I then took 50 mg of Tramadol and slept another 4 hours. The second night did not go as well however we were out listening to music and didn't go to bed until later. Took my .50mg of ropinirole at 9:15PM. Was in bed around 10:30 and awake about 12:20 so took my 50mg of Tramadol then. Slept until 4AM but then couldn't get back to sleep. My legs weren't restless but just could not sleep. My legs started to get restless at 5:30AM so I got up. Last night I took the ropinirole at 9PM and my legs were still restless at 10:30PM. I finally dozed off and slept until 12:30 so again I took the 50mg Tramadol then. My legs would not calm down. However, I woke at 5:10AM so I must have finally dozed off. Sorry for rambling again but I wanted to give details to see if maybe I am timing my doses incorrectly or is this just what I can expect until I go to no ropinirole?
I guess I was hopeful that the final stages would be as tolerable as the earlier stages of coming off the ropinirole. I have my long car ride home on Monday and am getting anxious about that as we can't start traveling until the afternoon and that is when my legs start to get restless. Thanks for listening and thankful for any advice.

[ddkjohn7]

Me again with another Tramadol question. Can it cause insomnia? I woke up again last night around 2:30AM and took 50mg of Tramadol. I slept for about an hour but then woke up and couldn't get back to sleep. My legs were not restless but could not sleep. This seems to be the pattern now that I am down to .50 mg of ropinirole about an hour before bed. I sleep for about 3 or 4 hours and then wake up so I take the tramadol and my legs stay calm but no sleep. Do you think I would have the same issue with Tramadol ER? Thank you.

[Rustsmith]

Yes, opioids can cause something like insomnia for those of us with RLS. Most doctors assume that opioids are sedating and don't understand that we tend to react differently. The term that many of us on the board use is that our opioid medication is "alerting". We are still dead tired and what to go to sleep but our mind is wide awake and alert. I have this with methadone and address the alerting issues by taking my once/day pill at lunchtime. For me, the alerting goes away after about 8 hrs so I can get to sleep at my normal time. If I forget to take my methadone at lunchtime and then remember in the late afternoon, I know that I will be awake until at least midnight.

By the way, the term that doctors use for this alerting type reaction is "Paradoxical Effect".

[Vadowa]

Stick with your current ropinirole dosage until your August appointment at the Quality Care Center. Your doctor there can provide the best advice on how to proceed with your medication adjustments. Consider discussing with them if increasing tramadol could help manage your symptoms better during this transition period.

[ddkjohn7]

Thank you. Does this continue to get worse the longer you take the medication? And does it happen with all types of opioids? Since I just started taking the Tramadol, would I benefit from switching to another opioid?

[Rustsmith]

This is not something that is specific to the tramadol. If you have the alerting reaction to one opioid, it will probably occur with the others. The only way around it would be a medication with a longer half life than tramadol. The options with longer half lives are oxycontin (not oxycodone) methadone, Tramadol ER and Suboxone.

[ddkjohn7]

Going to stop taking the Tramadol and just get by with my .50 ropinirole at 9PM and try to get at least 5 hours of sleep. I am on the wait list at the Quality Care Center so hopefully I can get in before my scheduled appointment in August.

[Rustsmith]

You don't want to abruptly stop taking the tramadol. Go to a half pill for a couple of days and then a quarter for a couple more before stopping. Stopping too quickly can cause Anti-depressant Withdrawal Syndrome, which can cause severe anxiety and depression that lasts for up to 90 days. I have been there and assure you that it is not something that you want to experience. I ended up having to see a psychtherapist to get over it.

[ddkjohn7]

I appreciate the advice. How long were you on Tramadol before you stopped? I will take .25 for a couple of nights. I have only been using it for 10 days. Also I wanted to just say how much I value the willingness of everyone to help and respond to posts on this forum. It is priceless! My husband is very supportive but it helps to have a sounding board. I am so grateful that I found the RLS Foundation and this community of supporters!

[Rustsmith]

I used to switch back and forth between methadone and tramadol every six months. I had a severe reaction to Wellbutrin that caused my RLS to go ballistic. I couldn't even sit for more than 20 seconds for almost a week. I was constantly on my feet with zero sleep and zero rest. In desperation, my put me on both methadone and tramadol ER as well as she upped the dose of gabapentin and pramipexole that I was taking. Three weeks later, due to circumstances outside of either my control or my doctor's, I was involuntarily committed to a psychiatric hospital by a doctor who violated a number of hospital policies. Apparently, he thought that I was a drug addict who needed help. The psyc hospital abruptly cut off my tramadol ER with the excuse that it wasn't part of their formulary and not in their pharamacy. That was a weak excuse because there was a major hospital and also a retail pharamacy across the street. I believe that it was because they were getting paid a daily rate to care for me by Medicare and tramadol ER was too expensive.

Therefore, I was either on it for six months or for three weeks. As it resulted, I ended up with a severe case of Anti-depressant withdrawal syndrome with nightmares, migraines that didn't respond to my normal meds and PTSD. Normal psychotherapy didn't help (I tried for over a year) and I finally had to go through treatment using EMDR to reduce the PTSD symptoms. I still experience the nightmares and thoughts about my week in that hospital are enough to have driven me near suicide on several occasions since then.

I did go back onto tramadol ER for a short time after that (before I found out how to treat the methadone side effects) but I was careful to follow my doctor's and pharmacist's instructions on how to correctly taper down to zero. I have also since found that almost no doctor realizes that tramadol is an anti-depressant because it doesn't carry that label from the FDA.