New Member Augmentation?

[rondebbs]

Hello, I have had Insomnia for decades. I'm 61 year old male and started having issues with my legs 4 years ago at night. No big deal at first but got progressively worse to where it made my lousy sleep much worse. Legs seemed to kind of pulse, ache or have tired electrified feeling, I needed to get out of bed and walk/stretch constantly. I could not sleep more than 90 minutes at a time.
In October 2020 I started Pregabalin (1 or 2 at 75mg) and Ropinirole. Worked great for 2 months then stopped working then got worse, arms are now impacted (maybe I would have continued to get worse anyway). Stopped taking Pregabalin and stayed on just Ropinirole for several months, still no good (was the Ropinirole making me worse)?
After a couple more months I stopped Ropinirole and started 300mg then 600mg Gabapentin. Then down to 300mg, still no good. New DR wanted to try Pramipexole today. I got prescription then researched today. OMG this is almost the same as the Ropinirole that seemed to make me worse. Maybe it was the Pregabalin that made me better for first 2 months and then maybe the Ropinirole at the same time made it worse 2 months later. My new DR says RLS will not impact arms. Is it possible for augmentation to start in a couple months with Ropinirole? I've been off Ropinirole for 1 month and on Gabapentin for that same month. Could I still be suffering from the Ropinirole augmentation even though it has been out of my system for a month? I will not start the Pramipexole .125 but will try the Pregabalin alone. Please give me thoughts and ideas. Thanks.

[Rustsmith]

Your symptoms sound a lot like augmentation from the ropinerole. The fact that it worked and then stopped helping and that your movement urges moved to your arms are both classic symptoms of dopamine agonist augmentation. And yes, you can augment in just a couple of months. Some people have augmented in just days.

Normally, after you have augmented you should not go back onto a dopamine agonist, at least not as the primary mode of treatment. Since pregabalin seemed to help, it would definitely be worth a try. Pregabalin and gabapentin are in the same class of drugs as each other, so it would be one or the other. If that doesn't work, the normal next step for treatment of your RLS is going to be an opioid, but it can be very difficult getting a doctor to prescribe them, especially if the doctor isn't familiar with augmentation and it sound like your doctor fits into that rather large group. If pregablin alone doesn't help and your doctor balks at prescribing an opioid, let us know and we can point you to published literature that is intended to "educate" doctors that opioids are an appropriate treatment for RLS and that there is a very low chance of true addiction.

[Polar Bear]

rondebbs - Welcome.
You have not mentioned if your doctor did any blood checks. You need to have your Ferritin Serum blood checked and the level needs to be over 75, preferably over 100. It is generally accepted that a level of 20 is acceptable but this is not good enough for a sufferer of RLS. When you have this done don't accept just being told that your level is normal, you willl need to get the figures know what your own Ferritin level. What we really want to know is the brain iron level which is very difficult to do and the Ferritin Serum level is used as a guide.

Your doctor has said that RLS cannot impact the arms. - No, he is wrong - and to have said this would indicate that he is not knowledgeable in the treatment of RLS much less augmentation.

[rondebbs]

My doctor has not checked Ferritin Serum blood levels. When I talked to him about Ferritin/iron levels in my brain he said there would be nothing he could do about that. I can ask him to check the Ferritin Serum level in my blood. What course of action can be taken if my level is below 75? Is there a treatment for folks that are below 75? Thanks for the help as all this is new to me. I have ordered the book Clinical Management of Restless Legs Syndrome, so hope to get up to speed at some point.

[stjohnh]

My doctor has not checked Ferritin Serum blood levels. When I talked to him about Ferritin/iron levels in my brain he said there would be nothing he could do about that. I can ask him to check the Ferritin Serum level in my blood. What course of action can be taken if my level is below 75? Is there a treatment for folks that are below 75? Thanks for the help as all this is new to me. I have ordered the book Clinical Management of Restless Legs Syndrome, so hope to get up to speed at some point.

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://reader.elsevier.com/reader/sd/p ... 83A240A179

[rondebbs]

Thank you for the help. Today I received my copy of Clinical Management of Restless Legs Syndrome and it pretty much confirms that my current General doctor and Neurologist don't know much about RLS. I serarched for a new Neurologist in Central Florida that has some background with RLS and will see him on Wednesday. I have started taking an old Perscription for Pregablin and this is actually helping me get some sleep. I know it is similar to the gabapentim but for some reason seems to work better for me. Question regarging augmentation - I stopped the Ropinirole about a month ago and I stopped the Gabapentin 5 days ago. Since the Ropinirole has been out of my system for a month should any issues from the Augmentation be gone by now? I ask this because I feel the Ropinirole made me worse than my original baseline before starting Ropinrole. But since being off for a month I thought I would improve to my original baseline but I remain worse than I was before I started Ropinirole. So has the Ropinirole somehow made me worse long term - again even though I have been off it for a month? If so should the worsening sysmtoms from Augmentation be releived at some point?

[Rustsmith]

One of the questions about augmentation that hasn't been studies is exactly what you question, namely does augmentation make your RLS worse. There was a paper published about a year ago that seems to indicate that this is probably true. But the problem is that for it to be scientifically proven, it will require detailed before and after data in a number of individuals. It is difficult enough to get it for one person, much less the number required to demonstrate that augmentation permanently makes RLS worse. For the time being, most of us who have been through it would say a very loud YES!!

As for pregabalin, although it is related to gabapentin, it is very possible that it is working better. Gabapentin is not consistently adsorbed into the body. So even in a single individual, you might get most of it into the bloodstream one day and very little the next. Neither pregabalin nor Horizant suffer from this limitation of gabapentin, which is why they are frequently used after gabapentin has "failed" even though they are both significantly more expensive.

[rondebbs]

Thanks again for the good info. I went to a new Neurologist today. I don't have a lot of choices in my area in Sumter County Florida. Although slightly better I feel this guy does not really understand RLS either. He has ordered the Ferritin test along with B12, B6, glucose, folate, TSH Vitamin D, metabolic panel etc. I asked what would be the treatment if the Ferritin level is low. He mumbled something about the drugs but none of these have been successful except for a very short time. I guess if the Ferritin comes back low I can ask for IV Iron treatment – not sure how familiar he is with this procedure. Is there a way I can find Doctors that 100% specialize in RLS? I’m in central Florida one hour from Orlando.
I’m considering moving back to southern California as maybe I’ll have better luck finding an expert in Los Angeles or Orange County. Again, not sure how I find an expert in California either. Does it make sense to fly some where for treatment (John Hopkins etc.)?

[ViewsAskew]

Thanks again for the good info. I went to a new Neurologist today. I don't have a lot of choices in my area in Sumter County Florida. Although slightly better I feel this guy does not really understand RLS either. He has ordered the Ferritin test along with B12, B6, glucose, folate, TSH Vitamin D, metabolic panel etc. I asked what would be the treatment if the Ferritin level is low. He mumbled something about the drugs but none of these have been successful except for a very short time. I guess if the Ferritin comes back low I can ask for IV Iron treatment – not sure how familiar he is with this procedure. Is there a way I can find Doctors that 100% specialize in RLS? I’m in central Florida one hour from Orlando.
I’m considering moving back to southern California as maybe I’ll have better luck finding an expert in Los Angeles or Orange County. Again, not sure how I find an expert in California either. Does it make sense to fly some where for treatment (John Hopkins etc.)?

I actually moved to So Cal (first in LA, now in OC) so that I could regularly see Dr. Buchfuhrer. I first flew there for about 7 years - then decided this was silly and just moved. I have had infusions at a large cancer/hematology medical group - they have offices from DTLA to So Orange County. I've had infusions at their San Pedro and Long Beach facilities, and this month (hopefully insurance approves it), will have one here in So OC.

[rondebbs]

Wow this is great info. Is Dr. Buchfuhrer in LA/OC in California? Is he taking new patients? My blood test for ferritin level should be back tomorrow. I'm not sure if I can find a doctor in Central Florida that knows enough about this to do a Iron infusion. I would be willing to move back to CA if I can find a doctor that knows how to treat this. Did your Iron IV help your condition? Are you able to sleep better? Thanks so much for the info.

[rondebbs]

Two more questions to add (I left several questions about an hour or two ago). Regarding the Iron IV - how often does it need to be done? Does it give immedite or fast relief IE: would I expect to sleep good the night after the IV or does it take several days to get the benefits? Thanks - Brad

[Rustsmith]

Dr B's private practice is located in Downey, CA and he also works at the Stanford Sleep Center. There is also a Foundation Quality Care Clinic in San Diego at the Scripps hospital. Any of those would be great choices.

As for the IV iron, the benefit is not immediate. It usually takes about six weeks for it to kick in. As for frequency, it varies between individuals. Often a second treatment is needed after about six months but then it is more like a yearly treatment.

[rondebbs]

I had an appointment with the neurologist and got my blood work back. I wa surprised the Ferritin, Serum shows 429 ng/mL (high). I was hoping it would come back low and that the Iron IV might be a solution. Based on the high level the doc did not even want to refer me to the blood doc for consultation Iron IV. I was taking some one tablet vitamins b-6, D3, C, fish oil and Turmeric but skiped Wed and Thrus and took my fasting blood test Thurs morning. I can't account for why the Iron was so high. I was taking magnesium for a while but stopped about 5 days before the test, no iron supplement.

My neurologist did some tests and says I have neuropathy in my feet and hands and also says I have Carpal Tunnel. Hard for me to belive - I'm 61, 6' and 160lbs. Except for my perceived RLS very good shape. Never any issues with hands or feet. Just this very uncomfortable feeling in by calves and lower legs when in bed and can not sleep. This all got worse with Ropinirole and now lasts into the day and now is bothering my arms (around biceps and where forearm meets upper arm - other side of elbow). I stopped Ropinirole 6 weeks ago after taking for about 5 or 6 months.

Also I was able to schedule a June 14 appointment with Dr Buchfuhrer in Downey CA. But now based on my doc not sure if I might have something different than RLS. So frustrating, I'm exhausted from lack of sleep. Any thoughts?

[stjohnh]

Keep your appt w Dr B. He is known to prescribe IV Iron for some patients that have ferritin levels above the guideline cutoffs. Of course, he will also confirm (or refute) the RLS diagnosis.

[badnights]

Definitely see Dr B. He will help you understand what's going on, and he will have a plan as well as alternate plans for how to deal with it.