Worsening RLS

[Bloodhound669]

As of late, I have been having swollen feet and ankles when sitting too long or working in the yard too long. For the past three nights, I've had bad RLS that keeps me up all night. I am taking 7 meds: Omeprazole, Htcz/losartan, Amlodipine, Tamsulosin, Pramipexole, Atorvastatin, and Finasteride. Almost all of them have indications of worsening RLS. Any suggestions?

[Joolsg]

You need a full med review with your doctor.However, the most obvious culprit is Pramipexole.

So start to reduce that. What dose are you taking and for how long?

Read SueJohnson replies to ANY post and it sets out the blood tests you will need and how to get off Pramipexole. Also, here is the reduction schedule from RLS-UK. Scroll to Useful Resources.

Once off Pramipexole and on replacement meds, you can then discuss safely replacing the other trigger meds with your doctor.

rls-uk.org/useful-resources

[Bloodhound669 in reply to Joolsg]

Thanks for your reply. So, you think it's the pramipexole? I've been on it for a few years now. I am with the V.A. so I'll discuss it with my doctor in December (next appt.)

[Joolsg in reply to Bloodhound669]

Yes. Augmentation is Very common.Watch this video by one of the TOP world experts on RLS, Dr John Winkelman from Massachusetts General.

youtu.be/h5Hyhmxli54?si=JGv...(Not working as expected?)

[Whymelord in reply to Joolsg]

Thankyou for this,can I save it?

[Joolsg in reply to Whymelord]

Of course. It's publicly available on YouTube and on rls.org site.

[Whymelord in reply to Joolsg]

Thankyou Joolsg

[Madlegs1 in reply to Bloodhound669]

It's more complex than Pramipexol.

The prazole will cause RLS, the Amlodipine may cause swollen ankles.

Definitely get a full review of your meds compatibility, by a pharmacist, preferably.

Good luck.

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

You are taking all kinds of medicines that will make your RLS worse as you said.

Omeprazole can be replaced with gaviscon advanced which you can buy on Amazon.

All statins make RLS worse. Nexlizet (Nustendi (UK) 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. If you eventually take gabapentin or pregabalin you should be closely monitored as it can raise the bad LDL and lower the good HDL

Amlodipine is a calcium channel blocker that makes RLS worse for many. 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. And then there is reducing salt by 1 teaspoon a day nih.gov/news-events/nih-res....

Finasteride is an interesting one. It is safe for RLS. It treats hair loss and benign prostatic hyperplasia in men. It can treats excessive hair growth in women.. is a 5a-reductase inhibitor and therefore an antiandrogen. Helps counter tendency to gambling addiction caused by pramipexole, the most common reported side effects are impotence and decreased libido. If you are taking it to help counter the tendency to gambling addiction caused by pramipexole then you definitely need to come of pramipexole.

Tamsulosin can make RLS worse and you are already taking finasteride

Now on to pramipexole. Up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin or pregabalin won't work nor might iron. And one expert believes everyone will eventually suffer augmentation.

The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. The maximum amount of pramipexole is .5 mg.

Even if you are not suffering from augmentation now, it would be a good idea to come off it now as it will only get worse and it will be easier to come off it while you aren't suffering augmentation.

First off check if you are on the slow release pramipexole). The slow release ones usually have ER or XL after their name. If so you need to switch to the regular pramipexole because the slow releases ones can't be cut.

To come off pramipexole, reduce by half of a .125 tablet every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. (Pregabalin is more expensive than gabapentin in the US.)

The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls the beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. After you are off pramipexole for several weeks increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.

Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin)

Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.

If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20% ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.

[Bloodhound669 in reply to SueJohnson]

Thanks for the info A lot to decipher. Interesting about the Finasteride. It's for BPH, I have no gambling problems. I Not be liking the impotence and decreased libido thing though. Ha! Rather have a gambling problem. I only take 1/2 of a 1.5mg tab every evening of Pramipexole, they have no ER or Xl. I guess I will start lowering the dosage every night. I don't see a problem with discontinuing it. Hopefully not! Doing so will most likely upset my doctor though. Cannabis sounds good but wouldn't know which to buy these days. I'm a child of the '60s when it wasn't so potent. All these things may be hard to follow as it's up to my doctor and she's pretty set in her ways. Ferritin tests are probably unknown to the V.A. also.

[DicCarlson in reply to Bloodhound669]

BPH - natural solution - read the comments...

youtube.com/watch?v=AIbhXK2...(Not working as expected?)

[SueJohnson in reply to Bloodhound669]

If you don't have something to take in the place of pramipexole, I would wait to reduce until you see a doctor who can prescribe gabapentin. Show her the Mayo Algorithm to convince her.

[SueJohnson]

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, C, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

Since you can't see your doctor until December, I would suggest you go private even though you will have to pay for it. If you let me know what city and state you live in I may be able to give you the name of a knowledgeable doctor.

[Bloodhound669]

I see you have caffeine to help and caffeine as being harmful. must be an error. I take magnesium glycinate. I stay away from antihistamines and Melatonin, they both seem to make RLS worse for sure. I only drink decaf and early in the a.m. A rare small glass of vino and very rare ice cream. I hear that I may need some electrolytes so I may look into that also. Thanks for everything so far.

[Bloodhound669 in reply to Bloodhound669]

P.S. I'm not too fond of weighted blankets. Anything heavy drives me crazy.

[ChickenTwisty in reply to Bloodhound669]

Not a mistake, evidence each way can directly impact RLS symptoms and also contradictory secondary effects e.g. stimulate helps keep you alert and awake so can get through day but harder to sleep.

[SueJohnson in reply to Bloodhound669]

No error. For some it actually helps and for some it hurts. Go figure!

[Bloodhound669]

Thanks!

[Bloodhound669]

Are leg air compression boots worth the money?

[Guitarpickin in reply to Bloodhound669]

I have to assume they work but they’re really expensive, look labor intensive to put on, and seem generally impractical overall. But compression socks are amazing and come in various sizes and compression levels. Definitely give those a try if you haven’t already.