DECEMBER 2020 - New Members

[badnights]

Aujourd'hui nous accueillons Méry. Méry is 87 years old and has suffered for 30 years without treatment, and desperately wants help.
Je ne parle pas bien la francaise! Mais je comprendre un peu. Tu es bienvenue ici, you are welcome here, where all of us have suffered and understand the horror of it.

Please post - in French if you'd like, and we will try to translate, or in English if you feel comfortable with it. Google translate says:
Veuillez poster - en français si vous le souhaitez, et nous essaierons de traduire, ou en anglais si vous vous sentez à l'aise.

Start your own Topic, or post a reply in an existing Topic, to tell us more about your situation. The members here can provide information about treatment options - and lots of understanding.
Commencez votre propre Topic ou postez une réponse dans un Topic existant pour nous en dire plus sur votre situation. Les membres ici peuvent fournir des informations sur les options de traitement - et beaucoup de compréhension.

[Rustsmith]

Tuesday, December 22

Welcome to

Hockeyref, who has had RLS for over 50 years. It has affected his ability to sleep, travel by car, travel by air and forced him to stop working. It is now beginning to limit his social life because he cannot tell when the symptoms will kick in. He is using methadone to control the symptoms which creates it own set of issues.

Many of us also use methadone (or other opioids), so we fully understand those issues. If we can answer any questions or you would like suggestions on how some of address other sides of RLS, just post a note and we will respond.

[Rustsmith]

Wednesday, December 23

Welcome to

joey-954, who can't get enough sleep and Requip stops working 4 hours later.

Unfortunately, insomnia (both falling and staying asleep) is a part of RLS. If you have any questions or would like some suggestions to improve the control of your RLS, just post a note and we will try to help you out.

[Rustsmith]

Friday, December 25

Welcome to

Imago, who is 66 years old and has had RLS since age 28. Until age 50 it was intermittent. Imago used to take pramipexole when needed. But one year ago changed to LDN - naltrexone 3mg. It is working.

Glad to hear that LDN is working for you. We would be interested to hear about your experience since it seems to work for some and not others. So, please post a note and tell us more.

[Rustsmith]

Saturday, December 26

Welcome to

Lleifer, who wants to find a better quality of life. Lleifer is augmenting on ropinerole and needs help from this lifelong syndrome.

We would be glad to advise you about getting off of ropinerole and then what you need to do to move on while improving control of your symptoms. If you will post a note telling us about your dose, that will give us a starting point for our suggestions.

[Rustsmith]

Monday, December 28

Welcome to

domestictraveller, who has been suffering from RLS for maybe 15 years and the symptoms have gotten worse lately. He experiences it as leg aches/soreness at night, which has spread to his arms. The symptoms usually intensify halfway through the night, making at difficult to get decent sleep.

Are you taking anything to treat the symptoms? Some of the meds used to treat RLS can start to make it worse and spread to the arms and other muscle groups. If you would like us to provide specific comments, you can post a note telling us about your meds.

[Rustsmith]

Monday, December 28

Welcome to

Gloriamitt, who is 70 and was diagnosed with sleep apnea and RLS 20 years ago. She used primipexol successfully for the past 15 years and then developed augmentation and tried a drug holiday, which she could only tolerate for 5 days. But she did get the dose down to 0.25mg in March 2020. She went for a second opinion in November and was started on gabapentin. She is still struggling with timing the dose and has remained on gabapentin (500mg) plus the 0.25 mg primipexole. She is struggling with insomnia and can’t stay in bed. She is lightheaded and avoids driving.

Gabapentin only controls RLS symptoms for about 65% of us, but it does usually help with the insomnia so long as the RLS urge to move symptoms are controlled. But as you have found, it can also have some undesirable side effects, such as being lightheaded. It can take about 30 minutes to start to kick in, so maybe you need to take it a bit earlier (so long as the pramipexole is helping with the urge to move). If that doesn't work, you may need to speak with one of your two doctors about moving on to an opioid. A lose dose of an opioid will allow you finish getting off of pramipexole and will also control the urge to move. Some of us find that it can cause insomnia. In those cases, taking it about 4 hrs before bedtime or using an extended action opioid such as tramadol ER or methadone (which you can take once a day in the morning or at lunchtime). If you have any questions, please don't hesitate to post a note and ask.

[Rustsmith]

Tuesday, December 29

Welcome to

jimjadams, who is desperately seeking answers. He cannot believe it when he reads about people who have this twice a week? His symptoms hit late morning and keep him up until after midnight. He is looking forward to ideas.

You have come to the right place for answers. If you will post a note with your questions, we will do our best to answer them. As for people who have it twice a week, you need to remember that RLS is a disease that exists as a spectrum from mild to very severe. Those with mild symptoms may have it only occasionally. Those of us with very severe RLS can have it every day even though we are on medication to lessen the severity of the symptoms.

[badnights]

Hi jimjadams
Are you currently taking any medication? For RLS/WED or for anything else? Usually when it starts at 11 AM, the patient has augmentation of the WED/RLS (that is, worsening of it) caused by dopaminergic medication.

You can't reply in this Topic, but you can start a Topic of your own in this Forum, or whatever Forum suits you. Looking forward to hearing more from you, I am sure we can help. And most of us here have daily WED/RLS - - I'd laugh with joy for the rest of my life if I only had it twice a week, goodness I'd be almost normal

[Rustsmith]

Wednesday, December 30

Welcome to

stephenstrumMD, who is a hematologist/oncologist but has a patient with severe RLS. He is looking for help for him. He lives in Vancouver, Canada.

Thank you for contacting us for your patient's benefit. If you post a note with questions, we can try to help. Your first step should be to check his ferritin levels. They need to be at least 100. If not, an iron IV treatment could work wonders. Here is a paper that explains that https://www.sciencedirect.com/science/a ... 5717315599

[badnights]

Welcome to arnebergd, who is looking for new treatments. arnebergd has had blood tests, and has tried numerous medications and supplements but has not found anything to reduce symptom severity. arnebergd is currently taking levo-carbidopa "at night and suffers from augmentation the following day". arnebergd says "I've had the condition for over 15 years and my doctors don't have anything more to try. I am 70 years old and get about 5 net hours of interrupted sleep per night. I also have not had a nap in those 15 years."

It's no wonder that you're here, you must be suffering something terrible. After 15 years, you can't even know what normal is anymore.

I'm glad you've heard of augmentation, caused by dopamine-type medications like levo-carbidopa. Augmentation is not just a next-day thing; it is an overall worsening of the disease. Symptoms are more intense. They spread to the arms and other body parts. They start up sooner when you sit or lie down. And they begin earlier and earlier in the day until finally they are with you 24 hours a day, except for a short period of time after the medication has kicked in. Even to get that much relief, you need more and more of the medication. Augmentation is the most awful thing that can happen to someone with WED/RLS.

Levo-carbidopa is the worst offender. It can seem like a life savior because it eliminates symptoms so effectively, but it comes back to bite you in the end.

Your doctor needs to get educated, I suspect, but let's find out a few things first. Can you remember the names of all the medications you've tried?

You say you've had blood tests; was your ferritin concentration measured along with other iron numbers? Do you have the results? If not, ask your doctor's office for a copy of the results. The actual numbers are needed, not just "normal" or "low" or "high".

The blood test is important because low serum ferritin concentrations have been related to two things: increased WED/RLS severity, and increased risk of augmentation if you're taking dopamine-type meds. For some people, just taking iron - no medication - is enough to return them to normal. Those of us who have been messed up by augmentation (caused by the very medication that was supposed to help us!) can still be helped by taking oral iron, or better still, getting iron infusions.

Of all the supplements out there, the only one known to help WED/RLS is iron. There is also some evidence that vitamin D can help.

There are three main classes of medication used for WED/RLS, not counting iron. One is the dopamine type meds which includes levo-carbidopa and the dopamine agonists pramipexole (brand name Mirapex), ropinirole (Requip), and rotigotine (Neupro, a patch not a pill). All of those medications cause augmentation.

The second class is a group of anti-convulsants (even though WED/RLS has nothing to do with convulsions). These are gabapentin, pregabalin (Lyrica), and gabapentin encarbil (Horizant). These are often not effective by themselves in patients who have augmented, but are useful in combination with meds of a different class.

The third class is opioids. Opioids may sound scary but WED/RLS patients have even less problems with addiction than chronic pain patients, who have even less than the general population. The doses used in WED/RLS are very low, but very effective.

All specialists have been aware for a long time now that daily WED/RLS should never be treated with levo-carbidopa, but many general practitioners and specialists in unrelated disciplines still don't know this, and do grave harm to patients like you every year. Dopamine agonists are better, but not much, because although they take longer (usually) they still cause augmentation. They have been regarded as the first choice of medication for a long time, but most RLS/WED specialists now are saying to limit the doses to about a quarter of what the FDA recommends, and to consider trying an anti-convulsant first. The dangers of dopamine-type medications are beginning to be recognized - but your doctor may not be aware of this.

The only way to stop augmentation is to stop the dopamine-type med. This involves a withdrawal phase during which your symptoms will get worse, beyond even their augmented state. It is a great physical and psychological strain to go through withdrawal without a potent opioid, nevertheless it is the only way to stop the agony of augmentation if you don't have a knowledgeable doctor. Hopefully your doctor will educate him/herself about all this.

The link below my name leads to a page of resources. One is the RLS Foundation's publications page. It would be worth joinging the Foundation to get a copy of the Medical Bulletin for Healthcare Providers, and giving your doctor a copy of it. There is also a very useful paper on treating WED/RLS with opioids, explaining when it is needed and how to do it.

I will stop here - - please start a Topic of your own and let us know what meds you've tried, what is your current dose of levo-carb., and what your latest iron and related numbers are, if you can get them. I will move this answer to yourTopic when you create it, if you'd like to keep everything together.