New and hoping for input on treatment

[nightcat]

Hi. I've been a member of the RLS Foundation a few years, reading materials regularly, but haven't been to the forum. Things have changed, and I could really use input.

I have three overlapping issues: insomnia; foot neuropathy; and RLS. I've had RLS for many years, but it has become worse in these last few years. I can cope with the neuropathy (especially with OTC lidocaine), but it does make it harder to walk off the RLS at night.

As for meds: The Neupro patch was unbearably sedating. I'm afraid to use the drugs associated with augmentation. I've spent years on first gabapentin and then pregabalin; they help with the neuropathy and RLS, but the sedation made me feel I was losing my brain, and the pregabalin weight gain made the neuropathy worse. I finally decided to wean off pregabalin (slowly), and I'm finally off - but the RLS is keeping me awake, waking me up, and is with me when I finally wake up. Low-dose codeine works for me, but getting a prescription is hard. I haven't looked into iron infusion at all.

I'm going to need SOMETHING, but I'm not sure what. I could go back on pregabalin and accept the cognitive impact. But maybe there's a better option. Suggestions would be very welcome!

Nightcat

[Rustsmith]

Nightcat, have you had your blood tested for iron levels, especially ferritin? And is your ferritin level over 100? The latest treatment guidelines call for iron therapy as the first step with the use of oral iron supplements or intravenous iron. Many with mild to moderate RLS find that this resolves their RLS with only occasional retreatments to boost their iron levels.

The only class of meds that you haven't tried yet are the opioids, but doctors are pretty much going to require you to "fail" iron therapy, dopamine agonists AND the gabapentin/Horizant/pregabalin meds before resorting to opioids.

[stjohnh]

Nightcat, Steve sounds exactly correct to me. Here is some more iron info.
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 InternationalRestless 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 ... 0517020758

[badnights]

Hi Nightcat
Combinations usually work best. A low dose of one of the dopaminergic (augmentation-causing) medications or pregabalin-type meds combined with a low dose of an opioid might be effective. Combining allows us to keep the dose of each med low, avoiding the worst of the side effects.

Many of us cannot tolerate any daily use of a dopaminergic med, though; not even a low dose. So some of us alternate - a certain number of days, weeks, months with a dopaminergic plus an opioid, rotating to an opioid plus an anticonvulsant, then back to the DA plus opioid, for example. There are a number of possible types of rotation. Rotation/alternation requires that you pay attention to your medication regimen, and track things carefully.

Combinations and alternations that make use of even low doses of DAs are not appropriate for some people whose brain iron stores are particularly low. At least, that's the theory. For certain, people with low ferritin in their blood - low levels of a protein that stores iron - tend to augment on lower doses of a DA and after less time. This is probably because the low ferritin in their blood reflects low iron stores in their brain. As the others have mentioned, people who take iron (orally, or even more effective, intravenously) often see a dramatic improvement in symptoms, sometimes to the point of not needing medication at all.

This is not for sure, but it seems just from people's experiences that if you're never augmented on a DA, you're more likely to be able to manage with iron alone.

[nightcat]

Thank you all so much for these replies! In the absence of a good specialist, I've been trying to find my own way. It's good to hear from people who know and understand.

Steve - I've had some iron blood testing (normal), but not recently. I'm not even sure it included ferritin. I'll pursue this with my new GP next week. I have tried opioids; I've taken codeine (only intermittently, because it's hard to get). It works well, low side effects. As for fails, I failed Neupro in a big way. Is that a dopamine agonist? It was so awful that I was afraid to try Requip or Mirapex. I was put on on gabapentin and then pregabalin for four years, and to me, those are fails, because I was so sedated, even at low-ish doses. But if necessary, I could probably handle a very low dose of pregabalin.

Which brings me to Beth! Combining treatments is a new way of looking at it. I didn't think I could use these drugs at the same time. If I could find a doctor to add codeine to very low dose Lyrica, that could be manageable. I don't like feeling sedated, but I also don't like being exhausted.

Holland, thank you for those details on iron. I'll print the article and bring it to the GP appointment. I wish I had access to a focused, attentive RLS specialist, but that's hard to find. Maybe the GP will go for IV iron. It's pretty encouraging to think there's a treatment that can really work (but I won't get my hopes up too much).

Sorry for the lengthy reply, but it's a relief to hear real information from all of you. Thank you!!

Nightcat

[Rustsmith]

Nightcat, you need to be sure to get the numbers when you have your doctor do your blood test. "Normal" is not adequate in this case because when it comes to ferritin, a value of 20 will be reported as "normal" for everyone else but we need to be at least 75 and better yet over 100.

As for the "fails", what is needed is enough information to convince a doctor to prescribe opioids. If your doctor would allow you to combine codeine and pregabalin, that could be the way for you to proceed and is a combination that could work for many years.

[Polar Bear]

Just to say that I echo the suggestion of treating your rls symptoms with a codeine and pregabilin combination. This is exactly what I do and it works very well for my 24/7 symptoms. Not perfect but that's ok. The ideal is to not aim for 100% cover but to get your symptoms manageable and to find some sleep.

[nightcat]

Steve and Betty - I really appreciate that feedback. I could live with that treatment (combining codeine and pregabalin) IF I can keep the Lyrica at a low enough dose not to feel brain-impaired.

I'm going to take information about iron testing with me to my appointment and be very specific about the testing and type of results I need.

I feel encouraged for the first time in a long time. Thank you, all.

[nightcat]

A couple of questions! I admit I don't really understand the Elsevier article on iron.

Which iron blood test specifically should I request from my GP?

I found past lab work and found these results. Are these the right tests?
Iron Bind/Cap 368
Iron, Serum 70
Iron Saturation 19
Ferritin, Serum 112

I'm not sure how to evaluate. If I understand the Elsevier article correctly, it doesn't look like that would warrant IV iron. But those results are three years old - worth repeating.

[badnights]

I failed Neupro in a big way. Is that a dopamine agonist?

Yes, Neupro (the rotigotine patch) is a DA. In what way did you fail it? What happened?

If you didn't augment on it, you're probably better off.

Re the iron, looks like the right things are being measured, except I'm not sure if iron saturation can be related to transferrin saturation, which is needed. I am not the one to interpret the results. Your ferritin is not much over 100, some doctors would prescribe iron, depending on your transferrin saturation which should be below 45%. Hard to find the right doctor, though...

[nightcat]

Beth, thank you for the information.

About Neupro: I was put on the patch. I can't remember the dosage, but it wasn't high. Before long I realized I felt heavily drugged. Couldn't finish sentences, couldn't think. I stopped taking it fairly quickly, but it took a while for me to return to normal.

Finding the right doctor is very hard, especially since I don't live in a major city.

I will be sure to ask my doctor to test for transferrin saturation too!

[nightcat]

By the way, my attempt to get off Lyrica has been a failed experiment. My brain is definitely working better, but I've had one night of sleep in five nights, and that only because of medication. While I wait to see a doctor, I'll go back to Lyrica at 50 mg. I can't cope and need some kind of treatment.

[stjohnh]

I will be sure to ask my doctor to test for transferrin saturation too!

Nightcat:

Different labs have different protocols for iron panels.
The end results you need (per the guidelines) are ferritin and %Transferrin saturation (TSAT%).

Your doctor probably isn't aware that just ordering a "transferrin" will usually not get what you need.
TSAT% is usually calculated from the Iron level and transferrin level. The formula is TSAT%=(Iron/transferrin)X70.9.

The point is to make sure the doc gets the results needed to do the calculation: so you will need the iron level and transferrin level, though some labs calculate the %TSAT for the doc on the lab report. Usually asking for an "iron panel" AND a "transferrin level" AND a "ferritin" will get you the results you need. Your last ferritin was only a little over 100, and a repeat could be less than 100. Be sure you haven't taken any oral iron for several days before the test and be sure to do the test fasting.

[nightcat]

So grateful for that, Holland. It's all so slow and frustrating, but information cures fear, if not RLS! I would really hate to get the blood test and have to repeat it.

[badnights]

By the way, my attempt to get off Lyrica has been a failed experiment. My brain is definitely working better, but I've had one night of sleep in five nights, and that only because of medication. While I wait to see a doctor, I'll go back to Lyrica at 50 mg. I can't cope and need some kind of treatment.

Lyrica can be very helpful in giving us the kind of sleep we need. Much better than a benzodiazepene or the newer types of sleeping pills. But it's hard to balance those side effects! Good luck