My experience with Ropinerole (Requip)

[creepycrawly]

I have been on this drug since 2004. My mother, aunt and uncle have had it also, so runs in my family. About 1.5 years ago I mentioned to my doctor that the dose of .50 was no longer working, so he increased it to 1 mg. About a year ago, i noticed my RLS hitting earlier in the evening, so I started to take my 1 mg a little earlier. I also noticed after taking my meds earlier and earlier, that it seemed the drug was actually making my symptoms worse!! About 6 months ago I talked to my doctor who suggested an increase to 2mg. I expressed my concern that it ran in my family and i had a lot of years to go (I'm 56) and didn't want to top out at full dose, but he ensured me we could go all the way to 8mg. OMG!! I have had some of the worse nights of my life. How could it be? I am on a higher dose and after i take it, symptoms spiral even worse!! I saw my doc 2 weeks ago, told him my RLS was out of control and I am so tired. He did a little reading and prescribed me Mirapex ….but wanted me to step down off Ropinirole gradually....2mg, down to 1mg to .50 mg.....take 1 day off and start the new med Mirapex....BUT then I found this forum. (What else can you do when you are not sleeping!!) Thank God for this site....I have gone thru the withdrawal period for 10 days.....and am off the Ropinirole...but have DECIDED NOT TO TAKE THE MIRAPEX, as i have learned it may eventually do the same thing! I do not want that! I will tell you getting off the Ropinirole has been awful but great at the same time. Don't get me wrong. I still have RLS symptoms daily and interrupted sleep BUT NOTHING LIKE when i was on the prescribed drugs...how ironic. I will continue to withdraw off the drug as i understand it can take awhile......even though I'm not taking it. .but this is still more manageable than it was. Some of the things i have tried for RLS....compression socks, ace bandage wraps, pickle juice, vinegar, exercise, hot jetted tubs, icy hot, avoid caffeine (even morning coffee)…..Can't say anything really works, but once in awhile i get lucky. I guess the HOT jetted tub before bed seems to help me most.. AGAIN, SO THANKFUL TO FIND THIS SITE....I will try to educate my doctor that these DA drugs are not the answer.....I just wanted to share my story and Thank everyone for your posts....I think you have helped save me from another vicious cycle had I gone to yet another DA drug.

[LotteM]

Well done for taking control! The max of 8 mg for ropinirole is for Parkinson’s Disease. My previous doctor (neurologist even!) made the same mistake. Very neglicent.

Anyway. First thing now to look at the try to improve things even further is your iron. Especially ferritin levels and saturation. Have a look at this paper ncbi.nlm.nih.gov/m/pubmed/2.... When you have your blood tested always ask for the full listof results, ‘normal’ will not suffice. If your iron levels are not high, you may want to increase them by taking tablets (ask your doc, but if she/he doesn’t want to prescribe, get iron bisglycinate and take every other day). And you can consider adding skin patches (obtainable through patchMD). Many people also benefit from magnesium (-citrate or bisglycinate, not Mg oxide)

[creepycrawly in reply to LotteM]

Thanks for the feedback. I already had asked Doc for my ferritin test which is higher than normal...but he didn't ask for some of the other pieces of the test that might show if it's actually being absorbed, so looking online to see if i can get that piece from another lab...(I shared the 4 pcs of the test i needed, but he said i didn't need those) i knew better. Thanks for info on Iron Bisglycinate. I'll have to read up on that. There are so many kinds and i was wondering which one is suggested. Same thing for Magnesium. I have wondered what version to take. I will also research the magnesium you suggest. I am so glad i am finally taking charge of this wicked disease. Last night was not great, but at least i am not on the drug.

[LisztLover]

I’m so glad you didn’t start Mirapex! I’m trying to get off of it currently! Once I’m off, I’m never going back either! Telling you that I’ve been suffering is putting it mildly, but you already know that! I’m looking forward to being where you are now! So glad we both found this forum!!

[creepycrawly in reply to LisztLover]

Yes, you know.....it's not fun living with RLS or trying to reduce or get off medications. Its so nice that people here truly understand what you are going thru. We really do. To sum it up...."Out of my mind".....So tired but not able to sleep....but it's getting better.. Symptoms are not as severe as they were on the Ropinirole, as i know now, that it was actually making them worse after i would take my dose. Keep me posted. I'm hoping to learn more about magnesium or iron supplementation too.

[Madlegs1]

"Can't say anything really works, but once in awhile i get lucky"

I think that phrase is the most significant aspect of your post.

I know you are not looking for answers, but I have to draw attention to the commonly ignored factor of triggers in rls.

The fact you "get lucky" , I imagine may mean you have left something out of your diet at that particular time, which has been triggering the episodes.?

Keeping a food diary is incredibly helpful to diagnosing rls causes.

Triggers are just one aspect of the whole rls issue- tyere are others ,such as ferritin levels. But I firmly believe that diet is the most important and overlooked, cause of rls.

Cheers.

[LotteM in reply to Madlegs1]

Sharp reply, Madlegs!

[creepycrawly in reply to Madlegs1]

Yeah, i really have been watching my diet. I recently stopped coffee in the morning, just in case....I had stopped caffeine in the afternoon with my favorite soda years ago...but thought i needed to consider everything. I already eat little carbs and little dairy...so that helps. Doesn't help that there's an established family history. But i won't give up trying.

[wcp2008 in reply to creepycrawly]

I cut the amount of Stevia (Truvia) I was using in half, when drinking my tea. I also cut the decaf tea I was drinking out of my evening routine. I believe I’ve had some relief, but which of the 2 helped, I am not sure.

[creepycrawly in reply to Madlegs1]

I am never opposed to any suggestions. Those with RLS are always open to ideas. What else are you going do when you are running around like a Nervous Nellie, and being so so tired but unable to sleep..... We research and look for clues

[Syvxdhkoy]

I've tried all of the various non-prescription treatments... iron, potassium and magnesium supplements, compression socks, CBD oil, etc. and I do think they help but the strange thing that seems to work most for me is folding my legs under me, similar to Child's pose, and putting all my weight on them as I read for 20 minutes or so, essentially cutting off their circulation. I do this in bed so that once they start to tingle from loss of circulation, I can unfold and attempt sleep right away. It's really been working for me lately, even when my legs have been bad immediately prior to doing that. Although, I also just started an L-Theanine supplement so maybe that's helping too. Who knows!? Good luck!

[creepycrawly in reply to Syvxdhkoy]

That is strange but anything no matter how odd is worth a shot. i know we all feel that way.. and are up for anything. The strange thing is i was reading through a collection of things that have worked for others (not sure if this site or elsewhere) but that person said lying on their stomach helped them...Little did they know i was in a flare up of systems, really bad....like when i think i am going to lose my mind.....and I tried it then and there, and if you can believe it, it stopped if for me..(I had forgot about that). So maybe similar. Will use that next time....but i have seemed to have less severity since I've been off the drug completely now for over a week..... Still have it, still interferes with sleep …...but less ALL OUT RLS

[LisztLover in reply to creepycrawly]

I used to lay on my stomach for relief, but my arms were negatively affected as they would tingle and hurt rather quickly. I agree that it helps...

[wcp2008 in reply to LisztLover]

I lay on my stomach and push up with my arms, arching my back. But, that only works as long as I’m in that position and as I start to fall asleep again...bang! RLS again!

[JakeRLS]

Pls review the archives for Kratom. I've been taking it in powdered form for about 4 months and it provides fairly quick relief which seems to last 4-5 hours. I'm afraid of it, because it is not regulated, and there are addiction possibilities. Because of that my dosage is 1/2 tsp (approx. 1 gram) which is fairly small, and so far I've not had to increase it.

[creepycrawly]

Jake

I have seen a few posts but will have to go back and read more of them. I hadn't seen any medical sites mention that....but it might be worth a shot...I don't want anything that might have addition, so that would be a concern...and a low dose might be an option...I really love all these ideas. Thanks

[creepycrawly]

I am the original poster of this message and wanted to share my update. It's been about 3 weeks since i reduced down from 2mg of Ropinirole to 1mg for 3 days, then .5 mg for 3 days and then off Ropinirole. My General Dr, wanted me to take 1 day off everything then start up on Mirapex low dosage.....Wanted to report i did choose to try to stay off all meds and didn't start the Mirapex and i will share that---I AM NO LONGER ON ANY RLS MEDICATION. I am doing this without any medications and my symptom are very light....and very manageable WITHOUT DRUGS. Symptoms are FAR LESS, than with meds. I haven't done anything different with my diet. Again, i had been on RLS medication since 2004, and had increased to 2mg over the past 1.5 -2 years.....my advisc would be get off the DA drugs if you can....you might just find that you are better off without any drugs over current situation. It was NOT pleasant as I weaned off and have some nights with maybe only 2 hrs sleep....but it DID GET BETTER. Give it a shot if you so choose...Everyone is different, but i had been on this a long time and did have many family and relatives with RLS history...SO THERE IS HOPE FOR YOU.