Hello and any advice for withdrawal?

[familynash5]

I've been an RLS sufferer since I was 13 and I'm now 56. I've done all the good lifestyle stuff and nothing much helps. After 14 years in clinic with Professor Chaudhuri, told at every 6m appointment there have been no breakthroughs or new developments, have learned about iron infusion. I have requested to switch to a different clinic that supports this treatment. Under Professor Chaudhuri I was on Targinact for 8 years and recently came off it, experiencing weeks of horrendous withdrawal I was prescribed Neurpro patches to help, only to find as I try to come off those, that the withdrawal is every bit as bad. I have my suspicions that the drugs are making matters worse and would like to come off everything to see how symptomatic I am now, and to assess the efficacy of the iron infusion. Any comparable stories and advice very much welcomed! Am otherwise a happy and healthy 56 year old. Thank you especially to those in RLS UK who have helped me understand the condition so much better recently.

[SueJohnson]

To withdraw from your neupro patch you have to cut it. Reduce by .25 mg every 2 weeks or so. 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. 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. Gabapentin or pregabalin is. The iron infusion was take up to 8 weeks to be effective and you make need more than one. Ask for a full iron panel after 8 weeks. Stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning. 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%. Once your ferritin is over 100 and preferably more if you still have symptoms you probably will need to take some medicine. You say you tried gabapentin and pregabalin and they didn't work. How much did you take?

[familynash5 in reply to SueJohnson]

Thank you. I can't remember it was so long ago!

[familynash5 in reply to SueJohnson]

I do appreciate your suggestions. Thank you so much. If you don't mind me asking further - if I'm going to take something to mitigate the withdrawal why not taper off more quickly? like from 2mg to 1mg to nil over 4 weeks, say? it's going to be hell. might as well go for it?

[SueJohnson in reply to familynash5]

Doing it more slowly will make it a lot easier on you.

[SueJohnson]

Another one to try is dipyridamole. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a... movementdisorders.onlinelib...

[familynash5 in reply to SueJohnson]

Thank you.

[SleeplessinOR in reply to SueJohnson]

Sue, can you tell me more about your experience with dipryidamole? What dose do you take? How long have you been on it? What is your dosing pattern and times? Side effects? I am currently on oxycodone and Tramadol, alternating as neither works very well for very long, and want to perhaps ask my neurologist about tying it. Thank you.

[SueJohnson in reply to SleeplessinOR]

I haven't taken it myself. You might want to use the search at the top of the right hand corner and put dipyridamole in or make a post asking those questions.

[SueJohnson]

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, estrogen, 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, 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, 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, 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.

[familynash5 in reply to SueJohnson]

Thank you. I take salbutamol for asthma, omeprazole for a hiatus hernia and oestrogel for the menopause but that's it. I've been through all the lifestyle stuff many times and am confident that I'm healthy on that score.

[SueJohnson in reply to familynash5]

If you take iron tablets take the omeprazole 4 hours before or 2 hours after as it interferes with the absorption of iron. oestrogel makes RLS worse for many.

[familynash5 in reply to SueJohnson]

Thank you. I wasn’t aware of that. But then my consultant and the clinicians at Kings never asked.

[familynash5 in reply to familynash5]

I take omeprazole in the morning and iron in the evening so that’s ok. I will look in to coming off oesteogel as that’s a very small dose.