Newbie to RLS.org, But Worsening Problems

[SteveSensei]

Hi Everyone.. My name is Steve and I'm a 75 year old in northern California with type II Diabetes. I've had minor RLS problems for years. Sitting watching TV in the evening, I'll have an urge to move my legs 1-2 days per week. An annoyance, but nothing major. However, on June 3rd I had surgery for a tear in my right shoulders rotator cuff.

All was well until about 2 weeks after the surgery when the RLS morphed into violent twitching and jerking of my arms and legs. This has continued for about 12 weeks now. My GP prescribed 1 Mg Ropinirole for me, which I took at 8 PM every evening, 2 hours before bedtime. The first week all was good, but going into the 2nd week, I noticed that 1 night a week, the Ropinirole had no effect. This went on for 2 weeks, so I went back to the doctor and he increased the dosage to 2 Mg. What I'm finding now is that if I wake up and go to the bathroom in the middle of the night, once I come back to be, the Ropinirole no longer works and I have to take another half tablet.

I've asked both my doctor and my surgeon about why a minor case of RLS has morphed into violent twitching and jerking after the surgery, but neither of them have a clue. My doctor thought there was an interaction between the drug and Oxycodone, which the surgeon prescribed for pain after the surgery and during physical therapy, so I stopped taking the Oxy about 3 weeks ago. I contacted the Ropinrole's manufacturer and they told me that there is no know interaction between Ropinrole and Oxycodone.

Any thoughts on this?

[Rustsmith]

Welcome to the group Steve

I would agree that there is no detrimental reaction between ropinerole and oxycodone. I take two similar drugs and found that they actually work together to control my RLS better than individually.

There are a couple of things that could have happened. Some find that things such as surgery can make RLS worse. But there is an even greater chance that blood loss during the surgery could have reduced your body's iron levels and low iron will aggravate RLS. The low iron is not the same thing as anemia, it is a loss of the body's iron stores and is measured by your ferritin level, which is a blood test that your doctor has to specifically request. If your issue is something as simple as low ferritin (you need to know the number since "normal" for everyone else starts at 20 and we need to be over 100), then an oral iron supplement or better yet, an iron IV treatment could make you even better than you were before. If you go the oral iron route, you need to take a product that has 65 milliequivalents of iron (which is 365mg if it is iron sulfate) along with a vitamin C. This should also be taken in between meals and not at the same time as a calcium or magnesium supplement (including TUMS).

Another thing for you to consider is the fact that the oxycodone is also a very effective treatment for RLS, in fact it is one that many of us take as a primary RLS medication. Starting oxy and then stopping should not have made your RLS any worse, but it would have covered any RLS symptoms after your surgery.

One last thing to keep in mind is that the FDA maximum recommended dose of ropinerole for RLS is 4mg/day. You are not there yet, but do not let your doctor increase you above that dose. Ropinerole is also used to treat Parkinson's Disease and many doctors do not realize that they should not use the higher Parkinson's doses when treating RLS. This is very important because getting off of ropinerole is a VERY, VERY difficult thing to do, especially from higher than the RLS max dose. If your doctor will not prescribe an opioid (like oxy) when stopping, you will not get any sleep at all for about a week (zero, not even slight naps) and your RLS will be worse than ever. After a week, you finally start to get small amounts of sleep and will finally return to your "normal" untreated RLS baseline after about a month.

[SteveSensei]

Many thanks for your response. Since I'm a diabetic, my GP usually has blood tests run every 6 months. He's told me in the past that I was borderline anemic, so I've been taking 65 Mg (325 Mg Ferrous Sulfate) every day for a couple of years now. I've also been told that there is not much blood flow in the shoulders, compared to other parts of the body, but I'm not an expert, so I'm not sure about blood loss. Part of the surgery was arthroscopic, but I also had a 2 inch incision made in the side of the arm.

[SteveSensei]

Quickie question. The violent reactions I describe that started after surgery began before I started Ropinirole. What specialty, such as neurology, should I look for in another doctor, since my GP does not appear to know much about RLS, even though he told me he had several patients with this problem.

[Polar Bear]

Just to add to Rustsmith's comment
""""One last thing to keep in mind is that the FDA maximum recommended dose of ropinerole for RLS is 4mg/day. You are not there yet, but do not let your doctor increase you above that dose""""
Yes the FDA max recommended dose for ropinerole is 4mg/day but many of our very esteemed RLS Medical Experts believe that the daily dose should not be over a max of 1mg/day to avoid the problem of augmentation. Also did your doctor start you directly on 1mg or did you titrate upwards until you reached the 1mg/day. You should have titrated up. At present you are taking 2.5mg/day ropinerole and in my opinion this is high.
I echo that coming off ropinerole is incredibly difficult. I had many attempts before I succeeded.

[SteveSensei]

My doctor began me at 1 Mg, but increased me to 2 Mg when the 1 Mg began to not work periodically. Now the same thing is happening to the 2 Mg. I took 1 tablet last night a 8 PM, went to be at 10 PM, then got up to pee at 2 AM. Lo and behold, the 2 MG pill no longer worked at 2 AM.

[Rustsmith]

The doctor that you should look for will be a neurologist. However, not all neurologists know how to treat RLS. If you can find one that specializes in movement disorders, that is the one that you want. You can find that by checking their website or calling the office and asking to speak with a nurse. Ask if the doctor is familiar with treating RLS and augmentation. The answer should make it pretty clear if that is the one that you want. If you cannot find one locally that fits the bill, you can try calling the neurology department at the nearest teaching medical school. You should be able to find one there.

As for your 2mg pill no longer working if you need one at 2AM, that is a pretty good sign that you are starting to augment on ropinerole. That makes finding a doctor who is familiar with treating augmentation all the more important because you need to get off of dopamine agonists sometime soon.

[SteveSensei]

Here's an update now that I've asked my doctor for lab work to check my iron levels:
Total iron: 61
Iron binding capacity: 331
% Saturation: 18
Ferritin: 47
So, it looks like the saturation percentage is the problem, although the Ferritin level needs improvement even though it's in range.

[Polar Bear]

Ferritin of 47 may be in the range of normal as normal starts at 20, but not for a sufferer of RLS.
Your Ferritin needs to be up over 100 as stated by Rustsmith in his post of 8 September.

[badnights]

My doctor began me at 1 Mg, but increased me to 2 Mg when the 1 Mg began to not work periodically. Now the same thing is happening to the 2 Mg. I took 1 tablet last night a 8 PM, went to be at 10 PM, then got up to pee at 2 AM. Lo and behold, the 2 MG pill no longer worked at 2 AM.

As the others have said, you have started to augment.

Augmentation is a worsening og the WED/RLS caused by the medication that is supposed to help it. And most doctors have never heard of it, so - like your doctor - they'll keep increasing the dose to try to control the symptoms, not realizing that they're making it worse. You have to stop the ropinirole. It will never help you; it will seem to help right after you take it, but the next day your symptoms will start earlier, they'll be more intense, they'll spread to other body parts. Up the dose, the symptoms will get even worse. Your doctor is unknowingly causing you harm.

Please get yourself a copy of the RLS Medical Bulletin (see my signature link for instructions) or one of the brochures on augmentation that are available to non-members. Print it, read it, and show the relevant parts to your doctor.

And your ferritin, as Betty said, is way too low for someone with WED/RLS. Try bumping your iron pills to two a day, take with vitamin C on an empty stomach if possible (assuming your doctor sees no harm in it). People with low ferritin augment very quickly on ropinirole.

[SteveSensei]

Quick update: I saw my GP this week to go over the results of the iron lab work (See Sept. 18th above). He said it all looks okay (I previously gave him the Mayo Clinic paper on managing RLS)! Needless to say, we got into an argument about that, but I did request and receive a referral to a neurologist at UC Davis in Sacramento. Can't wait for the appointment as the nightly limb jerking and twitching is driving me crazy, and as 'badnights' stated above, the symptoms are starting earlier in the evening.

[Polar Bear]

Excellent to get a suitable referral and I hope you don't have too long a waiting time.

[SteveSensei]

Another quick update. UC Davis, a leading teaching medical hospital in the Sacramento/Davis area, turned me down on the Neurology referral (see Sep. 30th above) saying my symptoms were not serious enough, even though my arms and legs are twitching/jumping about a foot, foot and a half. I spoke to Dignity Health and they said they are booking appointments for Neurology a year out! With the augmentation, symptoms are starting as early as 4 PM now, but then some nights, the problems don't start until after I take the Ropinirole at 8 PM. My GP doesn't think I need an iron infusion even though I've been taking iron pills for over a year now, so my next step is to have my wife video my twitching/jumping and show it to the idiot. Right now I'm not sure where to turn as there are no neurologists in my small town and getting a referral seems near impossible around here.

[stjohnh]

With your iron numbers, I think getting the IV iron is the way to go. My hematologist is sending me for my fourth set to start in about a week, and my numbers are higher than yours. I am in Palo Alto and the hematologist in Sunnyvale, about a 2-3 hour drive from Davis. I think you can get an appointment without a long wait. Kim-Son Nguyen, MD. At Palo Alto Medical Foundation (Sutter).

Since recent guidelines all have iron listed as first line treatment, it seems to me that seeing a more RLS friendly neurologist is not as important as getting the iron. Certainly if IV iron doesn't help, the RLS neurologist would be important.

[badnights]

saying my symptoms were not serious enough,

I wish there was a sure-fire way to get people to understand what we have to endure.

I hope you have better luck with the infusion than the neurology referral .. . . maybe you should go back to your GP and request a referral at a different place. While at the same time pursuing the IV iron.