New here

[shinderlider]

Thanks for the welcome! I’m a longtime RLS sufferer, about 50 years. I’ve been on ropinirole for about 20 years (now at maximum dose). Last fall I was diagnosed with venous insufficiency and have severe edema in my feet and legs. Overlying the issue are the two knee replacements and one revision which was completed two weeks ago. My struggle is the need to elevate my legs to reduce the swelling but my RLS makes this impossible, causing me to wonder if the ropinirole is working at all. I was reading the information on the site regarding augmentation and plan to discuss this with my PCP when I see her in a couple of weeks.

Until then, I will continue to read information on this site for possible relief. I welcome any suggestions.

Sue

[Rustsmith]

You should read through these two documents, highlight relevant sections and then ask your doctor for her/his opinion of what they have to say. The first is the latest recommendation for the treatment of RLS and was prepared by the leading RLS experts in the US. The second explains why low dose opioids are the proper treatment for refractory (i.e. post augmentation) patients, like you.

https://www.mayoclinicproceedings.org/a ... 0/fulltext
https://www.mayoclinicproceedings.org/a ... X/fulltext

If your doctor gives you a flat NO! on the use of opioids, ask to be referred to someone who would be willing to treat your RLS with them. This is not drug seeking, it is seeking a doctor who is willing to provide proper care for the patient and relieve their suffering.

[Polar Bear]

Welcome Shinderlider - you say you are at maximum dose of ropinerole. Please do tell us the exact dosage. There was a time when the max dose was considered to be 4mg daily, the information slip that comes in the medication pack probably still says this. However the RLS experts would now say that the max dosage should be around 1mg daily, this is to try and avoid/delay augmentation. It does sound like you may be augmenting on your ropinerole, 20 years is a long time to be taking it.
If you are augmenting the solution is to wean off your ropinerole. You will need support of other medications to do this and it would be a blessing if your doctor was agreeable to prescribing a short course opioid to help you over the first week or so. Are you at present taking any other medication for your RLS. To wean off the ropinerole your doctor may suggest Gabapentin or Lyrica but these would be unlikely to be sufficient on their own to cover the withdrawal and the increased RLS symptoms.
Also, have you had your ferritin serum blood level checked. This is so important. Normal can be anything from 20+, however us RLS sufferers need our level to be up over 75, better up at 100.
If your RLS symptoms are not under control it will be very difficult to be comfortable in your chair with your legs elevated.
As a temporary solution really hot or really cold water (using a shower head or a bucket of hot/cold water) on your legs for about 20 minutes may often calm the symptoms and give a window where you could rest a little. It is usually only temporary and I would have used the icy cold water to give me the calmness and a chance to get over to sleep.

[shinderlider]

Thanks for your reply, Betty.

I’m on 4mg of ropinirole daily. Since I suffer 24 hours a day with my RLS, I split the tablet in half and take half every 12 hours. I don’t take any other medication for RLS. I do suffer from mild diabetic neuropathy and have begun to research Lyrica as a possibility which may address both conditions. I actually have a telehealth visit with my endocrinologist tomorrow and plan to ask his thoughts on the Lyrica.

I have not had my ferritin level checked but have added it to my PCP questions.

Although I’ve not tried the hot or cold water idea, I do on occasion have insanity-inducing itching when my edema is at it’s worst and found the best relief is to rub ice cubes on my legs. I’ll have to try that when the creepy crawlies are really bad. I am trying the Vicks Vapo-Rub idea for the first time tonight. Even if it doesn’t work on my RLS, it’s cleared up my stuffy sinuses!

I’m learning so much here on the discussion board from folks who “get it”. Thank you again for your response.

[Polar Bear]

I also have neuropathy and my Lyrica is prescribed for this with the benefit of helping my rls.
When I settle to watch tv and feel some rls breakthrough starting I massage with a prescribed moisturiser and go do something mobile for about 15 minutes. This often helps.
4mg ropinerole is high. I was taking 5mg (madness) at one stage and took 10 months to wean off. My treatment is cocodamol 30/500 x 2 tablets x 4 times daily, and Lyrics 300mg morning and evening. These are both the max doses and work pretty well. Often I will intentionally leave out the afternoon dose of cocodamol without issue. These are then available if I need them in the middle of the night which happens rarely.
Make sure to have your Ferritin checked.
The fact that your doctor has not checked your Ferritin makes me wonder how experienced he is in the treatment of rls.
Most of us find we need to be proactive in our treatment and educate our doctors.

[badnights]

Betty said "The fact that your doctor has not checked your Ferritin makes me wonder how experienced he is in the treatment of rls.
Most of us find we need to be proactive in our treatment and educate our doctors." This is so true! Another sign that he doesn't know how to treat WED/RLS is that he let you get up to 4 mg ropinirole! Nuts. And for so many years. Coming off it will be hard but you may be so very pleasantly surprised once you're off it - - if you've found a doctor willing to treat it with opioids, that is. Nothing else seems to work for augmented patients. Goof luck!

[shinderlider]

Thanks, Beth.

I started a thread on the Augmentation forum entitled “Transitioning” where I am recording my journey off ropinirole. It will catch you up on the plan my PCP and I have agreed to implement at this time.