good news/bad news update

[GrandmaKarey]

The last time I updated, I was down to 3.5mg Ropinirole, and anticipating lowering to 3.25. Unfortunately I started having vicious RLS attacks, ‘spasms’, if you will. I stayed at 3.5 until a mix up with my mail order pharmacy, where I only had 2mg tablets, and none of the .5

This forced me to drop to 3.0 mg. I thought it might be a good thing in the long run, but it is not. I’m having horrible withdrawals, and RLS basically all day from the time I wake up (4:00am consistently) almost until I take my nightly dose of Ropinirole (11:00pm) . I just feel like hitting something, most of the time. But I cry instead. 😩

I have two calls into my sleep doctor now about the opiods that we discussed in December. No reply so far. 🤦‍♀️

I suppose the good news is that I got my blood work back and am now scheduled for two iron infusions in March. I’m really really hoping this helps or I might lose my mind.

Test results for reference;

iron bind.cap.(TIBC) ug/dL

250 [339] 450

—————

Result detail 2. UIBC. . 288 ug/dL. normal reference range is between 118 and 369.

UIBC ug/dL

118 [288] 369

—————

Result detail 3. iron. . 51 ug/dL. normal reference range is between 27 and 139.

iron ug/dL

27 [51] 139

—————

Result detail 4. iron saturation. . 15 %. normal reference range is between 15 and 55.

iron saturation %

15 [15] 55

—————

ferritin, serum

NG/mL

15 [55] 150

I’m not sure what most of it means, other than the ferritin which is horribly low, correct?

Thanks for reading,

Karey

[Joolsg]

Yes the ferritin and percentage saturation are very low and the sooner you get the iron infusion the better.You need that low dose opioid asap to settle the severe RLS symptoms. The spasms are classic severe DA withdrawal symptoms.

Can you call the specialist and ask for the opioids?

If you can't get through- is cannabis or kratom legal in your state?

Cannabis with at least 20%THC can help a little. Kratom can really help the withdrawals. But use with caution as it can become addictive and tolerance develops quickly.

So only use it to get off Ropinirole. And use the lowest possible dose of red vein borneo kratom.

[SueJohnson]

The iron saturation is very low too. It should be at least 20% so it is good you are getting an infusion.

Can you cut your tablets or at least call your doctor to get some of the ones your need at your local pharmacy.

As far as the future since you had trouble reducing from 3.5 to 3.25 you can get an inexpensive jewelry scale that measures down to .01 gram from Amazon for around $11 and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks. You may be able to get one the next day so that would solved your current problem too.

While you are waiting for your iron infusion take two of your 325 mg ferrous sulfate tablets . I may have told you this before but take it every other day preferably at night with 100 mg of vitamin C or some orange juice since that helps its absorption. Also take Lactobacillus plantarum 299v as it also helps its absorption.Take it at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.

If you take magnesium, calcium or zinc even in a multivitamin, take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take turmeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. Don't take your thyroid medicine within 4 hours.

[Freen in reply to SueJohnson]

I am only on 0.75-1mg of Ropinirole, but have had severe RLS my entire life, only recently I have found a way to suppress it 'better', not completely but way better and its a simple test you can try, I'm not saying it will help in any way, but it does for me.

One night I forgot to take them before sleep (usually 1-1.5 hours before sleep ) and it was hell. I had read an article about absorption of medicine swallowed rather than dissolved so thought just let one Ropinirole dissolve on my tongue and see if it works, the answer was yes, it was 30-45 mins and it kicked in nicely.

I spoke to the doc about this and he just said if it works for you then great, so now I do it most evenings, let a 0.25 dissolve then swallow it as a liquid, this seems to then allow me to take the other 0.5 much later as I don't need it, and I now get most of the way through the night on it. I now keep a 0.25 on me at all times so if I get it in the day, I'm not so bothered - aeroplanes, cars wow that is agony.

The other thing I found, was when I was on 1mg (and sometimes on 0.75 in one go) I went to bed and had achy arms, this method doesn't seem to do that either.

As I say, may not work, but hey, could be worth a shot!

Hope this helps, all the best!

[SueJohnson in reply to Freen]

If you had achy arms when swallowing it which of course is the normal way you are suffering from 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.

By your method you have put off augmentation for now, but it is likely that you will get it again using your method. That means you will have to come off it. So be very alert and if this happens post back here and we can help you.

Ropinirole (requip), pramipexole (Mirapex) and the Neupro (rotigotine) patch 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 them but they are not uptodate on the current treatment recommendations.

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 as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and 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. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen without progesterone, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.

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, 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.

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. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.

[Freen in reply to SueJohnson]

I appreciate your response, I have read up on every aspect of RLS, and the Mayo clinic studies, which i have sent to my GP. I have tried Gabapentin, pregabalin, and THC, i have had iron levels checked and Iron good. I have have had augmentation with Ropinirole when it gets to a level over 0.75 and i would love to get off it but it does work, for me at specific levels at specific times.

My mum who has it badly (this goes back 4 generations, that we know of) just got off Ropinirole due to years of use and augmentation, and its better with nothing than augmentation. I do get it, there is no fix for all here, just, maybe different approaches.

This forum and the help provided is awesome, saves lives, thankyou all, just sharing what is currently working for me for the last couple of months.

[SueJohnson in reply to Freen]

Understood!

That's great that your mum got off it!

Since you have read the Mayo Algorithm, I assume by iron you mean ferritin and by normal you mean over 100 since what is normal for others is not normal for those of us who have RLS.

I also assume when you tried gabapentin/pregabalin you were not on ropinirole since they don't work in that case.

Many people on the forum have their RLS controlled by low level opioids so when you eventually augment and need to come off it, there is hope.

[Maxineis4 in reply to SueJohnson]

A very long and detailed post ! From Sue Johnson Many thanks for that and others I’ve read on this platform, we have so many contributors on so many facets of RLS ,it’s medications that are all the same with a few variables, in dosage, time , described in detail and depth, some of us have tried them all and more in over 15 years of chronic RLS ,and yes bloods done under various conditions, I have seen so many doctors and so many specialist (neurologists) None and l repeat None ! Have been remotely or use apart from sympathy and the well worn phrase, I’m so sorry but there is no known cure for RLS , ( please please tell me if that always wheeled phrase is wrong) because amongst the jungle of post on medication, exercises, mental strength, there are always things that trigger the thought , should I try that , have I tried that , shall I discuss this with my doctor or specialist, I’ve tried that? My condition is chronic and shows no sign improvement,I’ve been off grid so to speak looking for a treatment medication or physical, plenty of suggestions plenty of support and plenty of sympathy from all directions over 15chronic years of RLS I do definitely believe there is no cure there is a limit reading posts and gleaning information from world wide contributors all with genuine concern and detail to share , so I read and take on board all information relevant or not regularly contact my GP and specialist but chronic RLS that can bring me to uncontrollable crying and shaking for at least 4 hours about 5! Times a week has no cure and it’s as simple as that!

I also suffer from cluster headaches ( these are not migraines!) totally different and very well medically researched, I’ve had that affliction for around 20yrs , there is no medication that can in any way ease the pain of CH the only prescribed treatment is medical oxygen ( on specialist prescription) using that with an on demand mouth piece can reduce a CH of a9or10 down to a 4 or 5 in about 30min

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