Question about RLS and meds.

[tuckbo]

I am new to the forum and have learned a lot from reading the many entries. I am curious to see if anyone has done the following: I just eliminated the antidepressant Cymbalta and hope to soon eliminate Ropinirole from my system. Why? I am convinced both have contributed to my restless leg issues. Has anyone else been on these two medications and gone off them?

[involuntarydancer]

I'm not sure about cymbalta. I know that a number of anti-depressants can exacerbate rls - I think Cymbalta might be one but you should check on that.

Ropinerole can be very effective against rls initially but, in common with all other drugs in the dopamine agonist family, it eventually starts to feed the condition in a process known as 'augmentation'. Once augmentation sets in a larger and larger dose is required to manage the symptoms. Symptoms can present much more profoundly. They can also occur at different times of the day (typically rls occurs at night but with augmentation it can start occurring earlier in the evening and even during the day) and spread into other parts of the body than just the legs. SO you are correct that ropinerole could be making your symptoms worse.

Discontinuing ropinerole is an extremely difficult process however unless you have been on a very low dose or for a very short period of time. It is advisable to reduce the drug gradually but even then you will experience an extreme worsening of your symptoms and typically no sleep at all for a period of 10 to 14 days after taking the last tablet. The only treatment that will help during this awful period is a strong opioid such as oxycontin which can alleviate the symptoms temporarily to allow some sleep.

Most people who have withdrawn from a dopamine agonist will say it is one of the hardest things they have ever done. Most are very glad they have done so once the process is over however. There is a sense of regaining control of the condition and of feeling more normal again. If you are interested you could check out the posts by Nick-the-Turk who withdrew from a dopamine agonist about a year ago and posted regularly throughout the process. There are many others who have done so also. Many will show up on a search of 'augmentation'.

It is worth getting your serum ferritin checked (get the actual figure - not just that you are 'normal') before embarking on a change in regime as high iron levels can help with symptoms.

[Lolly53 in reply to involuntarydancer]

This is the best and most thorough reply I have seen. Every person who has RLS and every medical practitioner who deals with patients with RLS needs this exact post. Thank you for wording this response, Involuntarydancer. I hope many many people will take this to heart. Those of us who have suffered through these things understand the importance of your words. Thank you.

[involuntarydancer in reply to Lolly53]

Thankyou, Lolly53. It made my day to read your response.

[Hidden]

The anti-depressant would probably be a big factor in making your RLS worse. as most anti-depressants can. The Ropinerole depends on your dosage and how long you have been taking it. Ropinerole can cause Augmentation which means instead of giving your relief it makes your RLS worse.

[tuckbo in reply to Hidden]

I too believe the Ropinirole is making my RLS worse. I am up to 8mg's a day. My doctor doesn't seem concerned by that high a dosage, but I absolutely hate having to take that much. But, if I don't take it, my legs drive me nuts!

[involuntarydancer in reply to tuckbo]

8mg per day is a high dose for rls. I think the max recommended is much lower than that. It is extremely likely that the ropinerole is worsening your rls - almost certain. But it will be hard discontinuing such a high dose. You should reduce gradually and not stop all at once.

[tuckbo in reply to involuntarydancer]

I agree that dose is way too high! Since I have just weaned off Cymbalta, I am worried about doing the same with Ropinirole so soon. It’s only been three weeks since I stopped taking Cymbalta. Weaning off it was horrible!

[involuntarydancer in reply to tuckbo]

I always try to give my body a chance to regroup when I discontinue a drug. Well done for quitting cymbalta. It will be tough discontinuing ropinerole from that high dose and I would suggest reducing very gradually.

[Hidden in reply to tuckbo]

Oh yes, 8mgs is way too high its double the dose for RLS, and actually now RLS experts only recommend to take no more than 1mg. When you dont take it like you seem to have tried its withdrawals you are getting. By taking the Ropinerole you are taking extra dopamine, so when you try to reduce your dose then the dopamine receptors object to not having the dopamine they have got used to. Thats why its sooo hard to get off a dopamine med. But many have done it and come through it. When you decide to try you need to ask your doctor for a pain med like Involuntarydancer has suggested, most people take Tramadol which helps with the withdrawals, its still not easy but worth it once you are off the Ropinerole Lots of posts on here where people have weaned off a dopamine med and you can get some tips that will hopefully help you. Weaning down very slowly is what most do, like just reducing by 1/2 a mg for a week or two then wean down again.

[tuckbo in reply to Hidden]

I am starting to question whether my doctor really understands RLS. She really didn’t want me off Cymbalta and pressured me to go with another medication. I truly would like to be off all medications except for my high blood pressure pill. For some reason, my doctor isn’t understanding in my desire to eliminate these drugs. The side effects are horrendous to one’s body!

[Hidden in reply to tuckbo]

Tuckbo if you suffer with Chronic depression then you will probably still need a anti-depressant there are 3 that are more RLS friendly that you can try. Wellbutrin but not available if in the UK, Trazadone and Remeron also known as Mirtazapine. If you have RLS then its for life there is no cure, so even if you came off your meds you will need something to give you relief. There are other med options to try look at rls-uk.org or some have found natural remedies some work most dont. I have never found any natural remedy to help with my RLS.

[tuckbo in reply to Hidden]

I tried some homeopathic products, but then I suffered with stomach issues. I was hoping CBD drops/pills would help, but once again, my body couldn’t tolerate it. I just need to be patient since it’s been less than a month since I started withdrawing from Cymbalta.

[Parminter]

Bully for you for escaping Cymbalta! Great!

Now that really is the drug made in hell.

[tuckbo in reply to Parminter]

I certainly agree with you. I have tried to withdraw from that drug several times and couldn’t handle the withdrawal symptoms. I had been on the drug since it hit the market, so to go off it, is quite a feat for me!

[Parminter in reply to tuckbo]

tuckbo, I belong to a Facebook group called 'Cymbalta Hurts Worse'. Although I have now escaped it, I thought I could help others with my own appalling experience.

Do think of joining, escapees are needed to help the still-afflicted. They are many, and desperate.

[kelka]

Rls.org has good info on medication that worsens Rls and augmentation. Perhaps you could print it off for your GP

[tuckbo in reply to kelka]

Good idea! Although she wasn’t that impressed when I shared some of my homeopathic discoveries!

[involuntarydancer in reply to tuckbo]

Many people have great success with homeopathic remedies but I would think that it is not optimal to share those results with your GP as they tend to have a strong evidence- based bias in their approach to treatments. If you want your GP onside it might be better to amass a dossier of the views of medical experts in the treatment of rls and enjoy your successes with homeopathy without sharing them.

[kelka]

I'm with her on that one! But the info on rls.org around augmentation is evidence based so should be right up her street :))

[marsha2306]

I am on a low dose of Cymbalta for nerve pain unrelated to RLS. When the dose was incensed to 60 mg My RLS returned with a vengeance!

[Stumpy4546]

I use Ropinirole,(Requip), in conjunction with Madopar, (co-benaldopa). They between them have reasonable effect, giving up to 2hrs relief, (no side effects). Its like most meds, non being specific for RLS, they all have or have not, differing effects on people. It’s the same old trial and error programme we all have to be party too I’m afraid.. The one thing guaranteed to stem my severe symptoms is illegal in the UK. However, if being penalised for wanting to sleep, AND be a productive member of society, so be it. CANNABIS....!!! with being on vacation at present I don’t have the dosage measure with me. One is 1mg tab 3xdaily, and I believe the other is 12.5mg 3 x daily, but cannot remember if these are correct or which way round. Will confirm when I return home 4th July.

Take care Tuckbo, hope you find your way!! JP

[tuckbo]

I would love to use something natural like Cannabis! It’s not legal in the state I live in, and being a resident of such a conservative state, we will probably be the last in the country to legalize it! As I stated earlier, CBD, in both oil and drops, didn’t work well for me either.

[involuntarydancer in reply to tuckbo]

In fairness, cannabis doesn’t work for everyone. It is possible you are not missing much. I use cannabis as an edible - it does nothing for my rls but it helps me sleep

[Rosieme]

I had problems with Cymbalta & had to come off it, might be coincidence.

[Cocomow]

Hi I am new here to.I have restless leg syndrome also.They put me on ropinarole and it helps alot. ialso take gabapentin and it helps with rls andback pain.