Requip and Collagen

[Brenda48]

I have been taking Requip for several years and started taking Collagen last year as I had come off HRTand my hair and nails were in a terrible condition. I seem to remember seeing that taking both was not advised, is that correct? I have gone back on HRT but it has not made any difference.

[Joolsg]

Collagen is fine. HRT can make RLS worse for many people. But many do well on it.

If you're on Requip please watch out for signs of drug-induced worsening ( augmentation) as it creeps up on you insidiously. Do NOT increase the dose if it stops controlling your RLS.

[Brenda48 in reply to Joolsg]

Thank you for your reply. My sleep pattern has deteriorated since using collagen and I couldn’t understand why. I am advised to take it with dinner but as soon as I go to bed the symptoms begin. I will give the collagen a miss for a few weeks before trying again.

[Joolsg in reply to Brenda48]

Brenda, I've just read your past posts.

7 years ago, Pippins advised you that you were suffering drug-induced worsening of RLS (augmentation) on 4mg of Ropinirole.

Sadly, that means you are definitely in augmentation.

You need to reduce the Ropinirole by 0.25mg every 2 weeks. Arrange to see your GP to discuss full panel, morning, fasting blood tests to ensure your serum ferritin is above 100, preferably 200.

Look at all the websites discussing augmentation and start reducing now. The RLS will become more severe the longer you stay on Ropinirole.

Read all SueJohnson replies and it sets out exactly what you have to do.

I was in exactly your position 7 years ago. Pippins responded to me and explained about augmentation.

I followed her advice, went through withdrawal ( which was brutal and hellish) and now have zero RLS.

It's difficult, but once you're off Ropinirole, you'll realise how bad it was.

[Brenda48 in reply to Joolsg]

Hi Jools, I’m afraid I haven’t updated my details for a while and am pleased to say I am no longer taking 4 mg of Ropinirole but changed to Requip and doing quite well on 2 mg reducing slowly to 1 occasionally! Wish they made a .5 tablet but I manage! I check my ferritin levels and they are always good but my surgery has no idea about my predicament even though they approve my repeat prescriptions so I tend to go it alone . Tried Gabapentin and Pregabalin but started falling asleep unexpectedly and my GP at the time took me off it! I will persevere and hopefully will be able to be free of RLS eventually!! Thank you.

[Joolsg in reply to Brenda48]

Requip is a brand name for Ropinirole. It's the same drug, but extended release. You can get lower doses, so ask your pharmacist for 0.5mg pills or 0.25mg pills and use those to reduce slowly. I know there can be difficulties getting hold of them though, due to supply shortages.

[SueJohnson in reply to Brenda48]

To add more detail to what Joolsg said: To come off requip, reduce by .25 mg every 2 weeks or so. As Joolsg said they are available. Do not try to cut the tablets because they are formulated as a 3-layered tablet with a central, active-containing, slow-release layer, and two placebo outer layers acting as barrier layers that control the surface area available for drug release. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. 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. Dopamine agonists like ropinirole are no longer the first line treatment for RLS.

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 ask your doctor for a full iron panel. Stop taking any iron supplements 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. 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...

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, 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, 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.

[ProudGreatNana in reply to SueJohnson]

Hi Sue, I read somewhere on here about taking vitamins B complex, D and magnesium at night time instead of a.m. I feel it has helped to make the RLS worse. Is that possible?

[SueJohnson in reply to ProudGreatNana]

It shouldn't but but everyone is different and responds to things differently.

[Typicallygaslit in reply to Brenda48]

Collagen is made from a few chemicals including glycine. Glycine can be troublesome for some poeple. For most people, it induces sleep but if you’re over sensitive like myself, then it makes everything worse. It seems to co-act with serotonin and could drive up RLS because of overload. I can’t use anything that contains glycine, it drives me as mad as anything that increases serotonin.

[SueJohnson]

Yes collagen can make RLS worse. If retaking HRT hasn't , then you can stay on it. For most it does make RLS worse.

[Brenda48 in reply to SueJohnson]

Hi Sue, I was sure I had read that collagen could make it worse! Surprised to hear that HRT can but I am reducing that too! Looking forward to autumn and winter as my hot sweats are more manageable then. Thank you.

[SueJohnson]

The problem with collagen supplements is that they contain hydrolyzed vegetable protein which contains MSG and MSG makes RLS worse for most.

[DesertOasis]

Brenda, contrary to what I always say on here, I would not stop the HRT. I think between the hormones and the Oxybutinin over the past 7 years you have not augmented as most would have. As painful as HRT is to RLS sufferers, in the short run, in the long run it protects your dopamine receptors and acts as a counterweight to the DA. So stay on it and think about hatching a plan with your doctor (and Jools and Sue) to slowly reduce and come off them. You might have an easier time than most.

As you reduce, in addition to whatever medication you are given, you must add in about 50mg of ferrous bisglycinate on an empty stomach about an hour before bed. I don’t care if your ferritin is 5 or 500, your serum iron plummets at night. We with RLS rely VERY heavily on that serum iron because we have such little stored brain iron. When it drops at night our RLS rises.

See third reply in this post:

healthunlocked.com/rlsuk/po...