ropinirole and me

[Krm]

I recently joined the forum, hoping to find some answers and am feeling soooo discouraged! There don't seem to be many happy stories and the few that I have found don't sound like severe RLS to me. I started developing RLS about 10 years ago when I was on an antidepressant. Went off the drug and my legs stopped bothering me. A few years later, my legs started cramping again and I started getting up in the middle of the night and soaking in a really hot bathtub. This became routine and while it affected my sleep it was bearable for a few years. Then I went on a .25 mg dose of ropinirole. That was five years ago. My dose is now 1.5 mg, plus 300 neurontin and .25 klonopin. My symptoms are controlled, and I am not technically augmenting but probably heading in that direction. I had one night from hell when I ran out of my ropinirole (long story) and it disturbs me how bad my symptoms are now are without meds. This finally prompted me to get more proactive about my condition. My GP is useless. I basically inform him about RLS and even then he doesn't follow through correctly on anything I ask him to do. I am waiting to set up an appointment at John's Hopkin's but am very frighten about going off of the ropinirole. In the meantime, I am doing things to improve my overall health because that can't hurt, I suppose.

[stjohnh]

Welcome krm, and you are correct, happy stories are not too common. But I assure you, there are lots of folks with severe RLS. Their daily life revolves around their disease, its treatment problems, and sleep issues. The basic problem is that there is currently no good treatment for RLS. There are treatments, but all have serious and difficult to handle side effects. This is compounded by a lack of knowledge by many doctors. You will find lots of support here and suggestions on how to deal with the multiple problems that arise.

[Polar Bear]

krm - you are absolutely correct, there are not many stories with a happy ending.
Something to bear in mind is that most of our members do suffer from severe RLS symptoms, we struggle with medications, the side effects of medications, all in our search for what will work.

Other sufferers who have minimal RLS symptoms may not have the same need of a support group, or they may join, have a look, but not hang about or post because they don't have the same needs.

Many of us feel we are 'guiding our GP', myself included.
This book is wonderful, it is easy to read and can be used for discussion purposes with your doctor.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon.

Also, have you had your ferritin serum level checked, this is pretty important. It is a blood test that is not normally done with routine blood works and you need to ask for it. This tells the level of iron stored in your brain – and that is what is important to us sufferers of WED/RLS. We need a level of around 100, especially if we are taking a DA drug such as pramipezole or ropinerole. When getting the results of this test please ask your doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us.

My ropinerole is at 4mg daily spread over 24 hours, dating from the time when 4mg was accepted as a suitable daily dose, it is also supplemented with other medication. I fully understand your fear at the thought of being without a suitable medication.

[badnights]

Hi krm! There are indeed happy stories out there, but the happy people have no reason to be posting on this board! Once in a while, someone will come back after a few years and say "hey, just wanted to let you all know that I haven't had bad symptoms in forever and I think it's because ...[yada yada]" So the happy endings exist, but you won;t read many of them here.

I had one night from hell when I ran out of my ropinirole (long story) and it disturbs me how bad my symptoms are now are without meds. This finally prompted me to get more proactive about my condition. My GP is useless. I basically inform him about RLS and even then he doesn't follow through correctly on anything I ask him to do. I am waiting to set up an appointment at John's Hopkin's but am very frighten about going off of the ropinirole. In the meantime, I am doing things to improve my overall health because that can't hurt, I suppose.

That wasn't your baseline symptoms you experienced the night you ran out of ropinirole. That was the increased severity experienced by someone withdrawing from a dopamine agonist. So you're not as bad off as you've been assuming.

When you do go off the ropinirole (and I do hope you have the backing of an informed doctor who can prescribe you an opioid when you do, or you have a hefty stash of kratom at least) you will experience these extra-severe symptoms for a few days to a few weeks. But the seriously insane symptoms abate eventually, and usually after only a few days. You might think you;ve gone to hell to live and you might want to give in and take the ropinirole to save your sanity, but it gets bearable after a few days if you hang in there.

The guys at Johns Hopkins are some of the best, put your trust in them.

Have you had your ferritin checked? One of the most important things you can do for yourself is add oral iron supplements to your diet if your ferritin levels are less than 75 ng/microlitre. Most labs will say your ferritin is normal if it's above 20, but that's not normal for WED/RLS patients, so don't accept "normal" for an answer, get the actual number. Low ferritin correlates with increased RLS severity, and also with the liklihood of augmenting on a dopamine agonist.

I am a an advocate of improving general health to lower dependence on medications and help us to live with a chronic debilitating condition without going mad from despair (or from being tortured daily, take your pick). I have tried a lot of dietary changes, and was able to reduce my WED meds and almost eliminate depression and anxiety. I think the the latter benefit comes from eating raw fermented veggies (raw so the good bugs are still alive in them). I tried all sorts of other stuff that was supposed to "heal my gut" but nothing had any noticeable effect except that. Oh, and the reduction in my WED meds, but I;m not sure what it was an effect of. I follow a diet meant for people with MS but recommended for me by my GP because WED/RLS is also a neurological disorder, and the most important dietary changes I made were to add a staggering quantity of vegetables and eliminate gluten, dairy and sugar (of which dairy is the only one I miss - no cheese!). I think that's what allowed me to reduce my meds.

I hope you read a lot here. Information is key to being able to control your own health care. Under my name below my posts is a link that takes you to a post where you can download a number of different publications having to do with augmentation, and others to do with iron and ferritin.