Side effects of Requip

[MJDK]

My RLS, prior to Requip was chronic persistent RLS. I've been very fortunate to get relief on most days from low dose Requip (.25 mg). I usually have to add xanax, ambien, or hydrocodone during the night to stay asleep. I've been on the same low dose for 2-3 years, taking the Requip about 6 pm. My neurologist told me to take it later, 8-9 pm, but I'd rather be able to relax in the evening than jogging in place until the medicine kicks in. My question - is it possible to develop side effects after being on a medication for such a long time? In the past month, I have developed severe dry mouth. At first I thought it was just my age (66). I've been thinking of using the Rotigitine patch because my RLS turns on any time of the day if I'm sitting. I thought perhaps the 1 mg patch would help keep the RLS at bay 24 hours a day. My neurologist said yes, I can try the patch but he wants me to be on 1 mg for a week, and then go up to 2 mg for 2 weeks, and then attempt to slowly wean off the Requip --- over several months --- I think he said 6 months. Then I researched the side effects of both drugs and realized that my dry mouth may be from the Requip and I may be having other symptoms that I didn't realize could be side effects of the Requip. I am incline to wean myself off Requip and get clean of any DA - - - - to find my base line for RLS. My ferritin level is 83. I have plenty hydrocodone (5 mg). Thinking of reducing my Requip by 1/4 tab every 2 weeks and adding 2.5 to 5 mg of hydrocodone. So, I'm just seeking advice and the answer to whether side effects can just pop up after long term use of a DA, and whether my plan seems reasonable. Thank you very much. Also, after reading the boards, I realize that my problems with RLS pale in comparison to so many others - wishing everyone well in their journey with this tortuous disease.

[MJDK]

Just found out today that the Neupro patch (or generic) is $750 for 60 days. Obviously, I will not be trying to change from Requip to Neupro. If anyone has any comments as to whether side effects can occur after long term use, please let me know. In the mean time, I will attempt to wean myself off the requip - - - s l o w l y.

[stjohnh]

Hi MJDK,

Side effects of dopamine agonists like Requip can occur at any time, but dry mouth is an uncommon side effect. Dry mouth has lots of causes, including old age and many other meds. If you are otherwise doing well on the Requip and not having to increase the dose, I would consider staying on it. Yes, it can have severe side effects, and augmentation is also a problem, but those are less common at lower doses, but the alternatives (alpha-2-delta ligands like gabapentin and Lyrica) and opioids also have significant side effects.

You didn't say much about iron, other than your ferritin was 83. RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is the only treatment that gets at the basis for RLS (low brain iron). It has almost no side effects. The International Restless Legs Syndrome Study Group has elevated IV Iron treatment to first line therapy. This means that IV Iron is one of the first treatments doctors should try, not one of the last (as has been done for many years). If you can get your doc to prescribe IV Iron treatment, that is the way you should go. Unfortunately this is fairly new information and most docs, even those that frequently treat RLS, are not aware of it. Note that the blood test doctors usually do to check for low iron (ferritin test) only checks for low BLOOD iron, there is no test available for checking for low BRAIN iron. Oral iron usually doesn't provide a high enough blood level increase to help, folks need IV Iron infusions. Here is a link to the recommendations:
https://www.sciencedirect.com/science/a ... via%3Dihub
Blessings,
Holland

[MJDK]

Hello Holland,
Thank you for your advice and the information. I made a mistake on my ferritin level. My ferritin level in February was 131. I wonder if that could have been a mistake at the lab, because it's never been over 83. Usually ranges from 50-75. And, interestingly, my MCHC was low at 30. It seems odd that the ferritin would come back so high and the MCHC low. Last night I reduced my dosage of requip from .25 mg to .18 mg resulting in terrible RLS. Amazing that such a small reduction could make such a difference. I will stay on the .25 mg of requip as long as it is working - adding the rescue medications (ambien, hydrocodone, xanax) as needed for sleep or when my feet and legs are hurting - which happens once or twice a month. Thank you for the information on the IV iron infusions. I mistakeningly thought that opioids were a first line therapy. I am planning to watch the webinar on Wednesday by Dr. Winkleman. Thank you again, always appreciate your thoughtful responses. Best to you, Jorjann

[badnights]

Yes, not surprised by your terrible night.... I think you might benefit from iron even if your ferritin is 131 and not 83. Did you get a full iron panel with the MCHC? Although, as Holland explained, the measure of iron in the blood is not a good reflection of iron levels in the brain, still it's the best we can do. Iron from tablets or infusion might work for you. Can you access one of the WED/RLS specialists at one of the Foundation's RLS Quality Care Centers? Or, well, not all of them are on board with the iron infusions, but for sure Dr Buchfuhrer in Downey CA or at Stanford, and the group at Johns Hopkins...

If you did go on the rotigotine patch, you might want to try staying on the 1 mg longer - - and getting off the ropinirole faster; you will want to avoid increasing the rotigotine dose to cover ropinirole withdrawal. There is usually no need to reduce from such a low dose of ropinirole anyway, but ask your doctor if there are specific reasons he knows of that pertain to you.

I got dry mouth from ropinirole. But it happened almost right away.

I usually have to add xanax, ambien, or hydrocodone during the night to stay asleep.

I assume, though, that you use them for different things - Xanax and Ambien to induce and maintain sleep, and hydrocodone to reduce the sensory wierdness and urge to move? (Unless you find that Xanax helps with the sensorimotor issues, too? I know clonazepam does for some people). My doctor once misunderstood me to say I took an extra hydromorphone for insomnia, when I told her I took it because I needed to sleep. I meant that I took it to stop the sensorimotor disturbances that were preventing sleep. We have to be careful with wording.

I realize that my problems with RLS pale in comparison to so many others -

Your problem is big enough, and you need help every bit as much as any of us. I'm glad you're here, and I hope you get some new ideas.