New here: stopping Requip with Dilauded

[abart]

Hello!
I’ve been reading but have never posted. I am thankful everyone is here sharing their stories.

I have had RLS to some extent as long as I can remember. As I kid I wouldn’t be able to sleep due to “wiggling”. I managed it though my early 40’s, with 1-3 nights per month where I did not sleep at all. I would stand and sway back and forth in front of the TV. Once the internet came about I was able to learn I was not alone.

At age 48 I went through chemo and radiation for breast cancer. I beat it, I am okay. Unfortunately this set off the RLS, and it was unbearable. I went to my primary doctor and she prescribed Requip. Five years later (now) I am a patient of Dr Buchfuhrer and using Dilauded to get off of almost 5 years of Requip.

Has anybody gone through this? I am shaking, feel hot and overall unwell. I’ve slept no more than 3.5 hours each night since I’ve made the switch, exactly 8 days ago. I keep worrying I have Covid 19, but then remember I’m coming off or and going on a few drugs.

Any insight or direction to more info in this forum would be greatly appreciated.

My best to you all,
Audrey

[stjohnh]

Hi Audrey,
I'm glad you found your way here. I've been lucky enough to have never needed opioids except for short spells, finally got off all RLS meds after IV Iron. I did have to go through withdrawal from pramipexole augmentation, similar to Requip. Anyway, withdrawal from dopamine agonists (Requip, pramipexole, Neupro) is tough at best. If you have augmented, it is pure torture. The Dilauded can ease the awfulness somewhat, but it is still bad. If you are getting 3 hours of sleep now, you are on your way to improving your life. Likely it will be quite a bit better in another week.

[ViewsAskew]

Hi Audrey - I went through that about 15 years ago. It was tough. Everyone is different, with some turning the corner at 5 days or so, and some of us not until day 15 or so. The majority seem to turn the corner at an average of about 10 days from my very informal analysis of responses here. It was at least 15 for me, if not 20 before I was confident that things had turned around.

It sounds trite...but hang in there. It does get better.

[badnights]

Hi Audrey and welcome.
Withdrawal from DAs is horrid. I don't recall being hot, but I definitely felt unwell; it was years ago, and I'm sure I've blocked most of it out of my memory. And I was only coming off a few months of DAs, not 5 years.
I didn't sleep at all for 2 days, and I was in endless agony of WED/RLS sensations; on the third day I started sleeping but only for 10-20 minutes at a time curled up tightly in an armchair. I'm glad you're checking in with us. I don't thnk you need to worry about covid19 if your breathing is good and no cough.

[Polar Bear]

Hi Audrey. I weaned myself off 5mg ropinerole without much in the way of extra withdrawal effects but did it very slowly. It took me ten months and I used codeine and lyrica meds. This is very different to how most people do it. Most folk do it like you are doing it.
But I was afraid that I wouldn't stick with the reduction if the withdrawal was too severe.

Take heart from what the others have said about their quicker withdrawal. You will get there much sooner than I did.

[abart]

Thank you Holland, Ann, Beth and Betty!

I appreciate your insight very much.
I am a little unclear on what would be next. Dr Buchfuhrer said I may be on a low dose of opioids forever. Is there a possibility that the RLS will go away? Or other options?

I'm on day 13 off the Requip completely and still feel sick. It's hard to know what is the requip withdrawal and what is the Dilaudid. I've never taken it before.


Thank you in advance for any input.
Audrey

[Polar Bear]

Your RLS is unlikely to ever go away. It is possible that it could be well controlled and if this can be done with a low dose of an Opioid that would be great.
When you say you still feel sick do you mean you feel poorly with possibly withdrawal symptoms, or that you actually feel sick/nauseous.

[badnights]

13 days seems a long time to still be nauseous or otherwise sick from stopping ropinirole. Opioids affect our guts as much as our brains; it could very well be the hydromorphone. You should probably contact Dr B and ask him about it.

As for getting better, I've found that I'm always wrong when I think as if I know what the forever-future holds. We just don't know. Practically speaking, most people are stuck with WED/RLS for a long time, but I know of at least two studies showing remission is not only possible but rather common. Most of us on this board have never experienced remission, because we tend to be the worst cases. I have, however, experienced dramatic improvement from a diet change, and a second marked improvement after an iron infusion (which has now worn off). Others have been able to stop medication completely after iron infusions. And then there are the as-yet-undiscovered treatments, and new understandings that will evolve from all the research that's currently being done.

Meanwhile, I'm on a low dose of hydromorph contin and if I have to be on it for the rest of my life, well, I can live with that (so to speak). But I haven't given up on finding a way to eliminate it, either.

[abart]

Thanks Betty and Beth!

When I say sick, I mean generally unwell. I feel shaky. It's like my whole inside is buzzing. Not like RLS, there's no pain, it's like I could jump out of my skin. It's hard to focus on work. I am depressed and cry a lot. A whole lot.

I'll call Dr. B.
Thank you for your insight.

[abart]

Another question. When would iron infusion come into play? Would it make sense now that I'm off the tequila for 2 weeks?

[Polar Bear]

""When I say sick, I mean generally unwell. I feel shaky. It's like my whole inside is buzzing........
it's like I could jump out of my skin. It's hard to focus on work""

Do you feel like a nervous shaky? ... I agree with Beth, it may be a question for Dr B.

You have mentioned that you are depressed. Is this just since your withdrawal or is it an ongoing condition.
Are you taking an antidepressant? They are often not a good friend with RLS.

[badnights]

The iron infusion can be done at any time, even as a first treatment before any medications are tried, if your iron bloodwork is within certain boundaries. (Measuring iron in the blood is not really reflective of iron in the brain, which is where the problem lies, but it's the best that can be done.)

[abart]

Thanks for your responses Beth and Betty!

Betty- it's weird. My hands and arms shake on and off. But I also feel shaky inside, not nervous though. It's hard to describe (like the RLS sensation!) so the best I can say is that I feel like my whole inside is buzzing.

I had 2 calls with Dr B on Friday. He said that I was on a very low dose of Requip (.5mg for 5 years) and also of Dilaudid (2-4 mg) and that he's surprised that I'd have and withdrawal side effects. He asked that I stay the course and we'd discuss in 2 weeks. That made me worried, because if not that, then there is something else wrong with me! He didn't seem to think I needed an Iron Infusion. (Iron Total: 144, Iron Binding Capacity: 412, % Saturation: 35%, Ferritin: 18)

I've been on anti depressants (Prozac) for 15 years. My RLS didn't get unbearable until 5 years ago, so I hope that's not it. I really need the Prozac.

[Rustsmith]

abart, anti-depressants very often produce RLS symptoms. The question is whether your Prozac is causing the RLS or is it acting as a trigger. Either way, the experts all agree that the first priority is to treat your depression since that can kill and then to treat the resulting RLS. So, if you feel that you really need the Prozac, Dr B isn't going to try to get you to stop. There might be a suggestion to try Wellbutrin as an alternative to Prozac. Wellbutrin is more RLS friendly than Prozac, but it also isn't as effective for treating depression.

[badnights]

Iron Total: 144, Iron Binding Capacity: 412, % Saturation: 35%, Ferritin: 18

ferritin 18? is that a typo?