Very belated intro

[GrandmaKarey]

I've had rls since I was in my teens. I'm now 66 years old. About 6-7 years ago, I was finally diagnosed with RLS, and given a medication that I can't recall the exact name of, but it was something like lebadopa carbadopa?? Anyway, that worked very well for me at first, but after a few months it would only work for about 4 hours, then I was up pacing the house.

I was switched onto Ropinirole - 1mg at first - and I thought my prayers had been answered. Ha! As I now know from this forum, it's not the answer. My doseage was raised (and raised, and raised again) to where I am now, 4mg a night. Other than occasional breakthroughs, where I take 1mg early in the evening, just to calm my legs down, then follow up with 3.5mg at bedtime, it feels under control. I realize it isn't, and this isn't the answer for me.

My main symptoms are in my knees or hip joints. It's always just one side or the other. Occasionally it gets into my shoulder which is bad since I have torn rotator cuffs.

Other than the medication, I get temporary relief with hot showers, walking, massage, and cannabis.

Things that trigger my rls are caffeine, melatonin, codeine, Claritin, and some antibiotics.

Obviously I need to get off the evil Ropinirole, which terrifies me, to be honest. I'm old, I have no cartilage in my knees, so I have a lot of pain. The kicking and squirming only exacerbates that.

I'm also temporary guardian for my 2 granddaughters, so I really have my hands full, and lack of sleep doesn't bode well for parenting 3.0.

Thankfully I saw my pcp last friday, and told him what I've learned off this forum. He admitted that he didn't know much else about rls, and referred me to a specialist that I found on the link Sue Johnson provided. (Thank you thank you!) If anyone is familiar with Dr Mari Goldner, I'd love to know what you think of her!

These are my current meds and supplements.

Calcium

cranberry extract (I have kidney disease and chronic uti's)

fish oil

Multi vitamin

vitamin b12

vitamin d6

baby aspirin

Evening

Gabapentin 400mg

hydrochlorothiazide 25mg

losartan 100mg

lovastatin 20mg

liothyronine 5mcg

levothyrozine 112mcg

Bupropion xl 300mg.

1 hr before bedtime

Ropinirole 2mg x2

just before bed, magnesium.

I know the weaning off ropinirole is going to be horrible, but I'm hoping it hasn't done so much damage that it can't be reversed.

I was put on gabapentin probably 25 years ago for issues unrelated to rls.

Sorry for the novel, just trying to give as much info as possible.

Edit to add; I get cortisone injections in my knees every 3 months. I'm unsure if that affects anything rls-related, but it doesnt seem to.

[SueJohnson]

Unfortunately all statins make RLS worse. Nexlizet (Nustendi) is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) reduces cholesterol although it doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS. And then there are Triglide (Fenofibrate, Fibricor, Lipantil, Lipofen, Supralip) and Bezafibrate (Bezalip) which are not statins which seem safe. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.

Since you take gabapentin you should be closely monitored as it can raise the bad LDL and lower the good HDL

hydrochlorothiazide is a diuretic and all diuretics make RLS worse. There is no safe substitute.

[SueJohnson]

Losartan makes RLS worse for many but not all. Some medicines that are safe for high blood pressure are propranolol (Inderal, Hemangeol, InnoPran) a beta blocker that may help RLS, Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. Other possibilities are: Clonidine (Catapres) an Alpha-2-Agonist used to treat high blood pressure which may help RLS and which also treats insomnia, tenex (Guanfacine, Intuniv), prazosin (Minipress) an alpha-adrenergic blocker that is also useful in managing sleep-related problems caused by PTSD and Tadalafil a vasodilator that in one study completely eliminated RLS. Discuss these with your doctor including side effects. And then there is reducing salt by 1 teaspoon a day nih.gov/news-events/nih-res....

[SueJohnson]

Time your medicines so that you take your thyroid medicine at least 4 hours from any medicines that contain aluminum, calcium, iron, magnesium. DAs like ropinirole inhibit TSH secretion so brings down thyroid hormones.

[GrandmaKarey in reply to SueJohnson]

So much great information here, thank you. With a lot of the medications I take being ones that /might/ trigger RLS, it’s hard to know which to change or stop, but hopefully I’ll hear from this doctors office to schedule an appointment soon, and go from there.

As far as the timing of the thyroid meds, is there a certain amount of time I should take them before or after the Ropinirole?

[SueJohnson in reply to GrandmaKarey]

Take them 4 hours apart.

[GrandmaKarey in reply to SueJohnson]

Sorry, another question. I went in for my cortisone injections in my knees yesterday, but my orthopedist wouldn’t do them since I’m on antibiotics for a uti.

Because of the excruciating knee pain I’m having, he prescribed Hydrocodone-acetaminophen 5-325 mg for 6 days until I’m over my uti.

I am sensitive to pain meds, and would probably only take a half dose, but I don’t even know if I should start it, since it might kick off my RLS.

[SueJohnson in reply to GrandmaKarey]

It's fine.