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[Scooter]

I have been watching the discussion board for about a year and decided to join in.
I'm 69 year old male in good health except for my RL and insomnia; and as a result of my sleep problems, depression. Have had the RL for about 5 years and have doctored locally, had the sleep study (of course they diagnosed sleep apnia - that's another story); am now on ropinirole taking 2mg 3/day. With my local doc have previously tried all the other recommended RL drugs, settled on ropinirole as the one the allows me to cope.

For past year have been trying different CBD tinctures and even a vap (scary) and some THC blends. I am convinced the marijuana products are helping so am pursuing those options.

That's my story. I will chime in on discussions from time to time. As a fellow RL sufferer...I share your pain.

[Rustsmith]

Scooter, welcome to the discussion.

Many of us find that marijuana products help with our RLS. I use a THC edible to help me sleep and a CBD tincture for anxiety (that's a totally different story, but is related to my RLS).

[badnights]

Hi Scooter. Glad to have you here (although I wish none of us had to be). You're on a heavy dose of ropinirole - total of 6mg daily? That's fine for Parkinson's patients (unless they have WED/RLS too!) but it's excessive for WED/RLS. Most doctors don't realize that. A group of WED/RLS specialists have said that 75% of the people they see, go to them because they've augmentation on ropinirole or another dopamine agonist and their GPs don't know how to deal with it. 75%! If every doctor knew not to over-prescribe those meds, not to give them to people with low ferritin, then the number of people needing to see a specialist for WED/RLS would drop to 25% of what it is - - and the suffering of that 75% would not happen.

Probably the best thing that could happen to you is to get off the ropinirole completely, which might involve difficulty. Read up on augmentation and see if you think you're experiencing it.

[stjohnh]

Hi Scooter,
Glad you joined us. I agree with Beth, your ropinirole dose is too high. Consider tapering down or get off it. Check into iron.

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

[Scooter]

Thanks to those who responded.
Based on your advice I am cutting back on the ropinirole and reading up on the need for iron treatments and if I am in augmentation. Some questions:

Ropinirole Augmentation - not sure I am in augmentation but do need to cut back from 6mg/day to at most 4mg/day. Should 4mg be my goal or is even a lower dosage better? Badnights suggested getting off ropinirole completely but what is the alternative? I know it won't go away.

Also I am not good at taking pills on a set schedule, how important consistency in dosage and time of day?

Iron Level - here are my lab results. I'm not sure how this equates to the terminology used in the link Holland provided, let me know if you see a problem.
Iron 82mcg
Transferrin 264mcg
TIBC 360 mcg
Saturation 25%

Marijuana - I will be looking to the discussion board for more experiences and will share mine. For sure I will be getting edibles for sleep. In the past 6 months I have come to rely on CBD tinctures, along with the ropinirole, to be my daytime RL solution. Using a THC/CBD vape blend to ease the insomnia misery but will be looking for blends that actually promote sleep. Not confident the attendant at the local dispensary is the best source of advice.

Will it get worse - thinking what will quality of life be like in 5 - 10 years. Does this 'disease' continue to progress? I have only been at it 5 years, I know some of you have suffered for much longer.

Thanks to all.

[Rustsmith]

First, the iron results that you posted are all on the low end of normal. But the test that you need for RLS is ferritin. A ferritin test has to be specifically requested. It is not dependent upon the other tests, so you will probably need to ask for it. The ferritin results for someone with RLS should be over 100, but anything over 20 is considered normal for others.

The fact that you are having symptoms of RLS during the day is a pretty good indication that you have augmentation. With augmentation, your symptoms occur earlier in the day and can spread to parts of the body where you did not have symptoms before (such as your arms). Once you are augmented, you really need to get off of the dopamine agonist class of medications, which includes ropinerole, pramipexole and the Neupro patch.

As for the way forward, if your ferritin levels are low, then increasing your ferritin might help a lot. Oral iron supplements can take time, so if you can find a doctor who will perform an iron IV, you might find that you do not need medication. If you do, the next step would be to try the anti-seizure class of meds, which includes gabapentin, Horizant and Lyrica. They don't work for everyone, but do help many. The final class of meds are the opioids. These help virtually everyone, but carry significant baggage in the current state of hysteria about opioids. Many of us have taken them for years with no problems other than finding a doctor to write the scripts and a pharmacy to fill them.

As for the future, RLS is a disease that slowly progresses with age. But this is different from what you are probably experiencing with augmentation (which as many times worse). There are no cures for RLS (yet), but with proper care from a knowledgeable physician, it can be controlled.

[stjohnh]

...
Iron Level - here are my lab results. I'm not sure how this equates to the terminology used in the link Holland provided, let me know if you see a problem.
Iron 82mcg
Transferrin 264mcg
TIBC 360 mcg
Saturation 25%

Marijuana - I will be looking to the discussion board for more experiences and will share mine. For sure I will be getting edibles for sleep. In the past 6 months I have come to rely on CBD tinctures, along with the ropinirole, to be my daytime RL solution. Using a THC/CBD vape blend to ease the insomnia misery but will be looking for blends that actually promote sleep. Not confident the attendant at the local dispensary is the best source of advice.

Will it get worse - thinking what will quality of life be like in 5 - 10 years. Does this 'disease' continue to progress? I have only been at it 5 years, I know some of you have suffered for much longer.

Thanks to all.

Scooter, the iron information is helpful, but you also need the ferritin. Assuming your ferritin is less than 100, you would qualify for IV iron according to the guidelines. BTW, the "saturation" given in the results above is the iron saturation, NOT the transferrin saturation that is required for guideline evaluation. The formula for transferrin saturation is iron/transferrin x 70.9. So your transferrin saturation is 22%.

The marijuana situation for sleep improvement with RLS is somewhat variable. I found that the only thing that actually matters for me is the THC content and making sure the dose is enough to make me feel "stoned." I think this is the finding of the majority of the RLS-marijuana users. However, a substantial number do say that some strains are better than others. The usual dispensary advice may be helpful for the average insomnia patient, but the insomnia of RLS is clearly different than most types of insomnia. Most types of insomnia do respond to CBD, but most RLS patients that have tried CBD say it doesn't help their sleep.

Unfortunately, RLS is usually (but not always) progressive, but not always in a steady fashion. Iron infusions put me very close to normal, and hopefully stopped the progression.

[QyX]

When you continue to experiment with Marijuana, you will most likely find that certain strains promote sleep better than others. Unfortunately there is no real way to predict which strains will be useful or not. Really interesting in my case is, that a sativa strain, which will activate and stimulate most people is the best strain to make me tired and sleepy. So while THC is important, the terpene profile of Marijuana seems just as important.

I wrote in great detail about my own experience with Marijuana in this forum. So maybe you find this information helpful. You can find it all here:

http://bb.rls.org/viewtopic.php?f=4&t=10329

The analgesic properties of Marijuana also allowed me to start taking Melatonin again, which further improved by insomnia and sleep quality in general.

Especially as long as your RLS is not super severe there is a lot Marijuana can do for you without the need for massive amounts of other medication.

[Scooter]

Thanks for the advice.
To Holland (stjohn) - I am excited by your advice on getting a ferritin test, especially seeing that you are a retired physician. My first thought is to share this info with my local primary care doc but now I am thinking it may be worth trying to get an appt with one of the RLS Foundation's recommended docs, I recall there are 8 of them. Your thoughts - is this something for a family practitioner?

To QyX - I will jump in on the Cannabis discussion string for that discussion. Thanks.

[stjohnh]

Thanks for the advice.
To Holland (stjohn) - I am excited by your advice on getting a ferritin test, especially seeing that you are a retired physician. My first thought is to share this info with my local primary care doc but now I am thinking it may be worth trying to get an appt with one of the RLS Foundation's recommended docs, I recall there are 8 of them. Your thoughts - is this something for a family practitioner?
...

The biggest problem in getting the IV Iron is the doctor's bias that iron is only needed if you are anemic. With the family doc route, you have 2 doctors that have to become convinced, your primary and the hematologist. With the RLS Quality care docs, that problem has already been addressed. Probably less time and hassle to go to the RLS Quality docs. Many of the RLS Quality Care docs have open appointments only many months in the future. You can make your RLS Quality Care appointment and still attempt to get the IV Iron from you local docs. If you end up getting it from local docs, you could cancel the RLS Quality Care doc appointment.