Debilitating RLS

[KAFM]

Hello, I am writing on behalf of my Dad who has suffered terribly with RLS and PLMD (amongst many other ailments) for most of his life. He sleeps so poorly I'm so worried about him. He is 82 years and whatever is prescribed seems to give shorter and shorter relief. His medical history is complicated. I am really here to ask if there are any new treatments that I could start to look at for him. He has used so many - Rotigotine is his current patch coupled with Gabapentin. I have just been reading about Buprenorphine. My knowledge is extremely limited (so far) but wondering what thoughts are on this or other treatments. He was put on Rotigotine by Prf Chaudri and whilst it was helpful/is helpful, I'm not hugely certain if its really doing that much anymore. Any advice or guidance really truly appreciated.

[SueJohnson]

If the Rotigotine patch is not doing much anymore, it is probably because he is 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 when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. I would suggest he get off the patch by cutting it in 4 and using 3/4 of the patch for several weeks and then 1/2 of the patch for several weeks etc until he is off it. If he find this is too much he can increase the time between the reductions. Near the end he may need a low dose opioid temporarily. Once he is off it, he can increase the gabapentin by 100 mg every couple of days until he finds the dose that works for him. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." He should take it 1-2 hours before bedtime. If he needs more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If he needs more than 1200 mg, take the extra 6 hours before bedtime. If he takes magnesium, he should take it at least 3 hours before the gabapentin. Have him check out the Mayo Clinic Updated Algorithm on RLS which will tell him everything he wants to know including about its treatment and have him refer his doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as his obviously isn't or he never would have prescribed the patch at

Https://mayoclinicproceedings.org/a... Also has he had his ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If he haven't had his ferritin checked, he should ask his doctor for a full iron panel. He should stop taking any iron supplements 48 hours before the test and fast after midnight and have his test in the morning when his ferritin is lowest. When he gets the results, he should ask for his ferritin and transferrin saturation numbers. He wants his ferritin to be over 100. If his ferritin is less than 75 then he should take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. He should take it every other day at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach and preferably at night. If he has problems with constipation he should switch to iron bisglycinate. If his ferritin is between 75 and 100 or if his transferrin saturation is below 20, he probably needs an iron infusion since iron isn't absorbed as well above 75. If he takes magnesium he should take it at least 2 hours apart since it interferes with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise ones ferritin. He should ask for a new blood test after 8 weeks if he has an iron infusion or after 3 months if he is taking iron tablets.

[KAFM in reply to SueJohnson]

Thanks Sue. I'm pretty sure his ferretin has been looked into but I will dig out his records and check the results. You've given me a lot to consider so I appreciate that. I'll revert when I've read and researched.

[Joolsg]

Was he on Pramipexole or Ropinirole before Prof. Chaudhuri put him on the Rotigitone patch? Could you tell us what other medicines he is taking for his other illnesses as many can make RLS much worse. As Sue asks, has his serum iron & ferritin been checked? Prof. Chaudhuri and the few other neurologists who know about RLS do not agree with the latest expert views that serum ferritin needs to be above 100 and often above 300 for RLS patients and iron infusions of Injectafer are the fastest way to achieve this.As Sue also advises, pregabalin or gabapentin can be tried next and if they don't help, low dose opioids.

[KAFM in reply to Joolsg]

Hello, he is taking 2mg/24 hr patch Rotigotine. 7.5mg Mirtazapine. 20mg Omeprazole. Vit D and he has Mometasone nasal spray. He suffers with Bronchiectasis, RLS, PLMD, Dystonia (one hand), and sleep apnoea. He has then has had pregablin added (I think I said gabapentin but I'm wrong) but sorry I didn't capture the dose yet. He was not getting much benefit and he has experienced severe nausea so they have maintained the original daily dose but added a small increment every other day (if that makes sense) and increased Omperazole to try and deal with nausea. I'm going to dig out his last results and check the details of ferretin etc. Prf Chaudri was great initially but dad actually came off rotigotine following the original prescription because he just felt so awful and we could never re-establish proper dialogue with Prf Chaudri to discuss alternatives - (and the cost per appointment stopped us booking a second visit). We've then cycled through some other treatments (I will revert with info) before going back to rotigotine because no one could offer him anything else. It's tricky because, I guess like so many, he has so many issues and not all meds are good in the mix with others. Opioids has been tabled but we've not progressed yet. We have a face to face with the Brompton for his Bronchiectasis soon and we will make sure to discuss it with them also. Hard getting the whole person looked.

Thank you for replying.

[Joolsg in reply to KAFM]

Did Prof. Chaudhuri tell him that Mirtazapine and Omperazole trigger and worsen RLS?If your dad is taking Mirtazapine for depression or anxiety, please discuss with GP. All antidepressants worsen RLS.

Only trazodone and wellbutrin are safe.

If he needs Mirtazapine for anxiety or sleep, there are better options. Low dose clonazepam or diazepam would help anxiety. Pregabalin also helps anxiety and aids sleep and is used for RLS symptoms.

If he's taking omperazole for nausea, he should switch now to a safe anti nauseate like quells or Zofran or the Scop patch which don't make RLS worse.

Both these meds interfere with dopamine and inevitably make RLS much worse. As UK doctors aren't taught about RLS, they're unaware that other meds can make the disease worse.

I doubt the Brompton will help as hardly any doctors in the UK know how to treat RLS.

What dose of the patch is he taking?

First, discuss alternatives to Mirtazapine and Omperazole and get full panel bloods.

If switching to alternative meds and raising ferritin above 100 still don't help, your father will have to consider slowly reducing the patch by 0.25mg every 2 weeks. The patch can be cut into quarters.

You didn't say whether your dad was on Ropinirole or Pramipexole before the patch. That would help in discovering whether he is suffering the most common complication of the Patch - augmentation. That is a worsening of RLS symptoms and often RLS affecting other body parts.

There is hope for your dad. Prof. Walker at Queen Square is also quite knowledgeable about RLS and cheaper than Prof. Chaudhuri and he will see your dad on the NHS. You could do an initial phone call appointment, pay privately and then be seen and prescribed on the NHS.

Prof. Walker is willing to prescribe low dose opioids which your dad may need if pregabalin and gabapentin don't help once off the patch.

The nasal spray is safe but watch for other anti histamines he may be tsking. Cetirizine and loratadine are safe but the sedating anti histamines make RLS worse.

[KAFM in reply to Joolsg]

I'm bit humbled by the depth of your reply. Thank you. I know I posted asking for help but I'm so appreciative of the time taken to properly understand and try to help. I'm seeing Dad again tomorrow and we will discuss all of this and I will gap fill on the previous meds. Once again thank you and ill revert soonest.

[SueJohnson in reply to KAFM]

Since the pregabalin seems to be causing nausea, you might want to switch to gabapentin. Although they are basically the same and usually have the same side effects, some people find switching gets rid of the side effect that was bothering them. Once you find the dose of pregabalin he is on, multiply it by 6 to get the equivalent dose and he can switch directly. Worth a try. If he does decide to come off them because of the side effects he should do so very slowly or he will have withdrawal effects. If he does it slowly enough he won't have any. Safe anti-nausea medicines are, Kytril (Sustol, Granisetron, Sancuso), Anzemet (Dolasetron), Zofran (ondansetron), vistaril (Hydroxyzine), and Transderm Scop (scopolamine) as Joolsg mentioned. Clonazepam has a half-life of 40 hours and diazepam has a half life of 40 hours. Both will lead to daytime sleepiness. A better one would be ativan.

[KAFM in reply to SueJohnson]

Thank you Sue. I'm travelling to see my parents tomorrow for a 4 day break and plan to discuss all of this in detail with them. Ill find out all the missing pieces. He deserves so much better at this stage of life. I feel a bit helpless so your suggestions are really appreciated. Thank you

[Hidden in reply to KAFM]

Hi KAFM. I think there is a lot of room for improvement with your dad. First the good news, the mirtazapine did not make your dad’s RLS worse just the symptoms. The 2mg patch is no match against the mirtazapine. The patch will probably provide much more relief once he stops the mirtazapine. It’s such a low dose that he was taking I can’t imagine it was for depression, but rather for sleep/anxiety. A good substitute would be 1/4 of a 50mg tablet of trazodone.

Omeprazole may also be making your dad’s symptoms of RLS worse. Does your dad get headaches? The Omeprazole gave me all day migraines. I use zinc carnosine by Lane Labs instead. One after each meal. It neutralizes the acid and heals the esophagus and stomach as well. Plus zinc is a great anti microbial which might be beneficial for his lung condition. Zinc in any form should never be taken on an empty stomach. Never!

I recommend mucinex as well for his lung condition. Such an old, safe, simple drug that is finally getting the attention it deserves. Google your dad’s condition plus mucinex/guafenisin. With any condition like your dad’s it’s so important to keep the secretions thin and out of the lungs. This will prevent and help with any infection and make for easier breathing.

If your dad still has RLS after stopping his prescriptions then in addition to the patch I recommend that he try one 25mg capsule of ferrous bisglycinate an hour before bed on an empty stomach. If his RLS isn’t gone in an hour (and he’s fast asleep) then follow what others on here recommend and have his iron parameters checked. The iron before bed has never failed to relieve my RLS - for that night. Must be repeated every night. Even if it works for your dad he should have his ferritin checked. If it’s in the normal range his doctor may even allow him to take 50mg. It has to be that form of iron. It is the most bioavailable form out there.

I, for one, think the 2mg patch is fine. If between the patch, the iron and stopping the prescriptions doesn’t completely rid him of RLS then maybe think about a low dose opiate in addition. A little codeine? I don’t know whatever his doc thinks is best for him in his situation.

[Playdoe]

I have RLS. Last night I used Quercetin and had zero RLS. An article reminded me I had it on hand because Quercetin fights covid like hydroxydhloroquine but is easier to find and has other benefits. Then found other articles mentioning it for RLS. Worth a try.

[KAFM in reply to Playdoe]

Thank you for responding. I will read about this.