WHAT AM I DOING?

[sweetiepye]

I have had 11 iron infusions so far , 1 more to go. It has helped so much. I see a Dr. who studied with Dr. Buchfurer on Oct. 14 . In the mean time I am trying to reduce the amount of requip I take. I was on 9mg. and I'm now at 6mg. I've been taking it twice a day 3mg at a time. I'm not sure what I was thinking, but I've been taking it farther and father apart.Now I am taking 1 pill every12 hours. Last night I decided to reduce the amount of requip so I cut a pill in half. I had a terrible night. Legs were crazy all night and still are. I want to know what's going on and what do I do next. I realize you might not have an answer for me but I hope you do. Am I withdrawing ?I feel sick, can't sleep. Help please. Pam

[Heatherlss]

Hi,

Indeed you are withdrawing. But I am of the opinion that maybe you've gone a bit too quickly. Withdrawal is very hard so I also think that you need something to supplement. I decided to forgo DA but had a terrible time for 8 weeks after the last dose. I couldn't keep up so I went back to the dose but again, I hadn't augmented so mine is a different story.

With your infusions and ability to drop the dose because of it, it is possible that you'll benefit with infusions alone. I have absolutely no one even willing to go close to infusion. You're lucky in that aspect. I wish you all the luck. It's going to be very hard but the people here are really good at this. Perhaps, they'll chip in with some advice.

[sweetiepye in reply to Heatherlss]

Thank you. I really don't know much about infusions , is there a problem with them?

[Celtic27]

Hi pam I'm sorry to hear your having such problems lately! Are you sure it's a good idea to adjust your medication with out first consulting your doctor as this is maybe the problem I've found in the past I can usually tell if I've missed a dose as it made me feel a lot worse so I consentrate on getting the dose right and don't have to many problems I hope you feel better soon all the best david 👍

[sweetiepye in reply to Celtic27]

Yes you are right, David. I've backed off trying to cut down on the requip. I'll wait till I see the Dr. I am so anxious to get off this drug , but a couple of weeks won't matter. It's always something lol. How have you been ? How is your rabbit ? My cat weighs 4 lbs now. She does more to lift my spirits than any medicine I've ever taken . Be well my friend. Pam

[Celtic27 in reply to sweetiepye]

Hi sweetie pye the rabbits great still a bit grumpy at times! I hope things go well for you getting of the medicine! Having a upset stomach feeling sick at the moment I hate this feeling my wife thinks if been eating too much of the wrong thing nearly been sick but hopefully it will settle down! You take care and God bless david x

[sweetiepye in reply to Celtic27]

Just whisper rabbit stew to your rabbit. He'll probably cheer right up.

[Celtic27 in reply to sweetiepye]

Not a good idea he would scratch my eyes out first

[sweetiepye in reply to Celtic27]

I thought bunnies were non aggressive.

[Celtic27 in reply to sweetiepye]

He's not to bad really been a while since he's scratched or bit me!!

[Joolsg]

Withdrawal from requip needs to be done very slowly. You’re on 6mg so you should reduce by 0.5mg every 5-7 days. With each reduction you will have withdrawal symptoms but that’s normal.

I hope you manage to withdraw slowly and don’t have severe withdrawal symptoms. You may need an opioid to help for the withdrawal period.

Once off requip you may find the iron infusions are all you need.

[sweetiepye in reply to Joolsg]

Thank you Joolsg, That's very encouraging and I think I can do it. I have to say requip is a beast and a terrible foe. My new Doctor will probably give me opioids for withdrawal . I am over anxious to get started. He will probably want to put me through a sleep study first, I don't know what his procedure is, but it may take more time. I want to get past living this way. The lack of sleep is draining my strength and my Afib is playing up. Afib, another beast. I live with monsters. lol Pam

[LotteM]

In addition to Joolsg’s advice, you mention you take the Requip twice a day. If you want to make progress until Oct 14th, try to slowly reduce your daytime dose. During the day you have far more opportunity and energy to deal with the symptoms. Take small steps (0,25mg is the smallest pill) and only do the next reduction when increased symptoms due to the previous reduction have subsided a little. This approach may prevent you from wearing yourself put before you see the doctor. Good luck. Oh, and well done to come down from 9 mg to 6 mg already on your own.

[sweetiepye in reply to LotteM]

Thank you LotteM, I wouldn't have thought of that. It is interesting to me that the best advice comes from people who experience this condition and have educated themselves. Doctors are woefully behind in their understanding. Again, thank you. Pam

[Parminter]

Reducing by half is a lot. Your brain is crying out for more, and will punish you.

Accept that you are essentially addicted, and you must reduce very, very slowly while replacing the DA with another drug.

Iron can wipe out RLS completely for a few, reduce symptoms for many more, and do nothing for some.

No matter which group you belong in, you need to take withdrawal seriously.

There are a few miracles for those with RLS, but not many.

ncbi.nlm.nih.gov/pmc/articl...

[sweetiepye in reply to Parminter]

What you say makes sense to me. There is no doubt that I'm addicted to ropinirole . I've been taking it for 12 years. It has turned on me and I'm having problems with side affects. I fall asleep in the middle of conversation or eating. I cannot drive anymore. So you can see why I'm anxious to end my dependence on this drug. I appreciate your information. Every little bit helps. Pam

[Parminter in reply to sweetiepye]

I had the opposite problems - I never slept at all, and I spent a lot of my limited funds shopping compulsively. Horrid.

This is a dangerous drug, and I have no doubt it should have a Black Box warning.

Will your doctor consider an opioid to help you to come off?

I was given methadone, and I came off DAs (also after about 12 years) overnight.

Whichever way you do it, get help. Doing this alone is close to impossible. There is no prize for being a hero.

[sweetiepye in reply to Parminter]

This is why I'm seeing a new to me Doctor. My regular Doctor will not give opioids and isn't really savvy about RLS treatment. I've been cutting down the amount of Requip since I augmented. I want to continue to do this because I'm afraid I'll augment again . I have it in my arms now and I have experienced it in the trunk of my body. It's horrid. No hero here, I'm just trying to hang on. Pam

[Parminter in reply to sweetiepye]

I get it, Pam.

My RLS was in my arms for years, and on the day it jumped to my trunk in the middle of a busy day I went cold turkey out of sheer terror, and just took a full dose of methadone - which I had previously used only for backup, at night.

That was the turning point. I had not expected such a miraculous change - I did not really expect anything, but I have had almost no RLS symptoms since that day nearly a year ago.

I assume you have the newest paper on the use of opioids in RLS?

[sweetiepye in reply to Parminter]

Never assume lol. I don't have it, how do I get it?

[Parminter in reply to sweetiepye]

mayoclinicproceedings.org/a...

There you go!

[sweetiepye in reply to Parminter]

Thank you so so much.

[Parminter in reply to sweetiepye]

Pleasure. I hope it helps.

My greatest lesson through this long and arduous journey is that it pays to educate yourself as much as possible, so that you can be a partner with your doctor, not a victim of your doctor.

Scientific words on paper are better than waffling. Doctors assume you will waffle, so don't! Surprise them!

[looloo4007]

Hi I didn’t know ropinirole was addictive I just asked to be put back on it starting @1 mg ,, this has made me think twice now

[sweetiepye in reply to looloo4007]

I have augmented on it which means it doesn't work for me anymore and actually makes the RLS worse. Once this happens you have to lower the dose, but you will eventfully augment at the lower dose . I wish I had never taken this drug and I will never take another DA. You have to make your own decisions of course , but I hope you will educate yourself on the side effects of this drug. Pam

[looloo4007 in reply to sweetiepye]

Yea I certainly will it’s been so long since I was last on it as I haven’t had bother with my RLS since I was taking tramadol ,but they are now lowering my dose of it to get me off it as I have been on it for so long ! I

[sweetiepye in reply to looloo4007]

Look up Dr. Buckfhurer , you can search this site. He has had patients on opioids for over 20 years for RLS. . You can also go through old posts here. There is a ton of useful information.

[niabxxx]

I went down to Southern California to see doctor dr. B one year ago when I was augmenting from pramipexole which I had been taking for 20 years. I had no problem at all coming off pramipexole because I started taking methadone right away. Since then my life has completely changed. I can sleep once again. Once in awhile I get a slight Touch of RLS but only for a minute or two. It's a whole new life. Why not just fly over and see doctor B? I had no problem getting the prescriptions here at Walgreens in my state.