Decided to stop Ropinirol

[Grandma132]

I am slowly reducing my daily Ropinirol dose from 1.5 mg. I cut several in half and instead of taking three pills, I took 2-1/2 for a week or so. I am now taking two for the last week. I intend to reduce my intake to 1-1/2 in a few days. And continue in that manner until I can stop altogether.

I don’t like the way I feel after taking the drug. I’m always tired during the day. Walking is a chore as my legs feel very heavy and I’m having difficulty losing weight. My daughter has noticed that I am a little more forgetful since taking Ropinirol; all of these I read are possible side affects. I think I would rather deal with RLS on my own, rather than taking drugs. If I can’t manage the condition, I will seek other options.

[SueJohnson]

I'm glad you have decided to do this. But it won't be easy. You will have increased symptoms. 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. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. But in the long run, you will be glad you came off it. However, it is unlikely you are going to be able to deal with RLS on your own without taking any medicine. You can certainly try. The first line treatment for RLS is gabapentin. If you decide to go that route, one would normally start with 300 mg gabapentin and would normally start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. If you start it after you are off ropinirole it takes 3 weeks to be fully effective. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin. Also 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 your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 and your transferrin saturation to be between 20 and 45. If your transferrin saturation is OK, then if your ferritin is less than 75 take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps with its absorption. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it can interfere with its absorption. Take it every other day preferably at night at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.

[Grandma132 in reply to SueJohnson]

Thank you so much for your response and encouragement. I seriously want to be free of prescription medication for RLS but I will make that determination when I have completed the weaning off Ropinirol. I did notice that when I went from 2-1/2 pills to 2 pills, my RLS was worse for a couple of nights. Last night was better. I will take your advice and cut pills into quarters and decrease more slowly starting next week or when RLS responds to the lower dose. I don’t recall my RLS being as severe as some people who post to this site so I’m hoping I will be able to deal with it drug free.

I did have a complete iron panel done and all numbers are within normal range. However, ferritin was 60.1. I did not have a TSAT test but a TIBC. The percent of iron saturation was 28. Is that what I should look at?

I have not told my doctor my intention yet, but he is very supportive and respects my decisions. I feel he is my partner in my health care.

[CrusoeCortez in reply to Grandma132]

I too am coming off Ropinerol. I started about 6 weeks ago and it's been pretty horrible. Worse than I was expecting, and it gets more challenging the lower the dose.I could not have got as far as I have without gabapentin. And even with 600mg before bed, Im usually awake for half the night and the only relief I get is from doing high numbers of squats (between 100-200) at 2am ish.

I've heard that opiates can help too but haven't tried these. I will succeed in getting off this ghastly drug tho.

Just don't underestimate how difficult this will be, especially towards the end.

Good luck, and hopefully it won't be so bad for you. 🙂

[Grandma132 in reply to CrusoeCortez]

Thank you. So far, it’s been ok. Though I only get about 3 or 4 hours sleep at night. I try to take a power nap of 30 minutes during the day. I wish I can do squats. I have arthritis in my knees so squats are painful. I too am determined to get off this drug. Good luck to you.

[TeddiJ in reply to CrusoeCortez]

hi-just happened to see this post. I think you may need to take more gabapentin-and it just might make a difference in your nights! I think many members on here take twice what you are taking. I think-please do ck and good luck!

[Grandma132 in reply to TeddiJ]

Thank you. I don’t think my RLS is a severe as many on this site. I currently do not take Gabapentin. (My dog takes 300 mg a day LOL) I really would like to stay away from any prescription medication if possible. I think if don’t rush it and go slowly, I will be ok. If not, I will talk to my doctor about Gabapentin. My daughter suggested valerian root. But I’ll consider that after I’m of Ropinirol.

[TeddiJ in reply to Grandma132]

hi-yes, I was just replying to CrusoeCortez, as he or she is taking a low dose of gabapentin and i wanted to make sure they looked into their dosing. As Sue points out above, I see!

I took Horizant, which is an rls targeted form of gabapentin and you don't have to build it up, and it did not work for me.

But, yes, you should keep all options in mind during your journey!

I gave you other advice, based on your comments being so close to my thoughts and my own hopeful plan.

just make sure valerian root isn't a trigger for rls. there are SO many triggers.

so interesting about your dog-I had no idea dogs took that! well, i guess you could pilch the dog's supply?! lol.

[Grandma132 in reply to TeddiJ]

Haha! I was surprised myself when my dog was prescribed Gabapentin … 300 mg.

[SueJohnson in reply to Grandma132]

Yes the percent of iron saturation is the TSAT.

[Eccleston]

You may be interested in the few words below concerning Ropinirole and similar that I found the other day.

From: rls-uk.org/rls-news

LATEST NEWS

The new Mayo Clinic Algorithm (2021) makes it clear that dopamine agonists are no longer first line treatment for RLS because of the high risk of Impulse Control Disorder (ICD) and augmentation of RLS symptoms.....

There is more info on their web page.

I have resisted the use of Ropinirole and try to rely on Iron infusions.

Eccleston

[Grandma132]

Thank you! This makes me even more determined to get off ropinerol.

[TeddiJ]

I, and most of the rest of us on here, did the same thing-got off the DA's. I hear you on the meds comment, as I am trying very hard to go without opioids and other rls meds. I did need an opioid to get off of the DA's but the opioid allowed me to almost go cold turkey. I only tapered for a few weeks last August.

It is proving to be difficult to go without drugs and I am relying on kratom/hirsuta to get through each night. My receptors could be permanently damaged, or, perhaps it takes a long time for them to heal. I am taking a berberine supplement for a few months to see if that helps re-set them. But, for now, you just have to keep going and do what you are doing. Just wanted to share a few details with you. And mention kratom as an option to help you get through.

Just fyi, I lost a lot of weight after getting off the DA's-it just fell off. I was not expecting that to happen.

Best of luck!

[Grandma132 in reply to TeddiJ]

Thanks! I would much rather go the herbal route. I will look into kratom and berberine. As I mentioned before, my daughter, who studies herbs, suggested valerian root. The drug interaction is not dangerous but it does intensify the Ropinirol. Not good. I have always found losing weight difficult but now it’s impossible and I’ve actually gained a few pounds. I am encouraged by your comment that weight comes off. Looking forward to that! At least my dieting may work.

Thanks again.

[TeddiJ in reply to Grandma132]

You're welcome! I would order a good quality, lab tested kratom (or hirsuta) to have on hand for the bad nights. It works within 10-15 minutes-incredible, really!

I am not saying you should use it forever but it can help alleviate so much unnecessary suffering and allow for much needed sleep. The powder works fast and the capsules take longer-which then allow you to sleep longer.

I know, right? I thought my weight gain was due to menopause and nothing much I did worked...even after a lot of biking and other exercise. I feel like it must be due to stopping the ROP and the PRAM. I also stopped downing tons of diet coke and switched to Zevia drinks. I certainly hope it happens for you, too, as it was such a fantastic surprise. I didn't even diet-it just came off.

Keep me/us posted!

[Grandma132 in reply to TeddiJ]

I never heard of kratom or hirsuta. Would I find them on a natural herbs site? If it helps even temporarily, I would be willing to try them.

[TeddiJ]

I had never heard of them either; total lifesaver from posters on this forum.

Mitragaia.com is a great one and lab tested. Try the red bali powder, or red borneo, first ($39), then add the capsules in later.

Hirsuta is from teatimebotanical.com.

[Grandma132 in reply to TeddiJ]

Great! Thank you. I will definitely look into them. For the last two nights, I only got about three hours sleep. I’m tired. 🥱

[TeddiJ in reply to Grandma132]

Ugh-I know-I would never sleep these days without it!