I was coming off Pexola and can definitely say it was absolute hell. I got to 0.25g and had started taking Lyrica which made be feel like a zombie for most of the day!! No improvement whatsoever but was adamant I was going to come off the Pexola......................To explain:
I have a family member like myself who has had RLS for close to 20 years. She was admitted to hospital for a slight stroke and was under a Neurologist. A MRI scan was ordered and due to her RL had to be aborted three times even with relaxing medication as her legs just would no stop moving. That is how severe her RL were!!
Her Neurologist said she was taking her Pexola incorrectly. She prescribed that she takes 0.25mg three times a day. This will allow the medication to be in her system by night. It has been 8 weeks and NO RL!! Hesitantly I decided to give it a try. I have applied this method for 4 night's and GONE are my RL. I have been able to watch TV without getting up to do my RL walk. Gone to bed and am able to relax and read a book without RL.
I know it is early days but when you desperate you will try anything. It's working not sure how long but to have relief from the most debilitating syndrome after 20 years is an absolute blessing. HOLDING THUMBS and praying it lasts!!!
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SurvivorD
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Please see my reply to Sue. You might want to be a little less hard on some of us. You don't know our health problems and life stories. We need positivity not negativity.
Thank you for your kind reply. I personally need a reprieve from my RL even if for a few months! To be able to live a "normal" life without walking kicking rubbing for close on 20years is heaven to me. I was supposed to be on vacation with my husband this week. I decided not to go as I didn't want to spoil everyone's sightseeing with my RL. My grandson went in my place. I have read and listened extensively to many reports on RL and I know about the augmentation which is fact!! Putting my head in the sand for awhile. Thank you and to everyone for your time and care 😘
I’m desperate to get off to Roprinolol but just keep having breakthrough RLS . I’m on 1.5 mg down from 2 and sometimes 3 with Gabepentin 300 mg. I want to get off the Rop. For that reason. Stroke! I’m 60 years old and it’s been 16 years of this horrible condition!! Good luck with everything you’re doing.
The usual advice is to 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. If that is still too much to reduce, you can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks.
On the gabapentin, assuming you have been on it for 3 weeks you can increase it every couple of days by 100 mg up to 900 mg but I would stop at that because it won't be fully effective until you are off ropinirole for several weeks and your symptoms have settle. After that continue increasing at that rate every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. 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. Most of the side effects of gabapentin 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 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily."
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, 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, 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.
hi deary how long does it take to work ..i tried it yesterday took a 1/4 3 times but had the most horrendous night and again tonite but just took my 3/4 of tablet at 8pm my leg muscles are screwing up tight so painful no relief from sifrol xx
I feel what you are going through!!!! It makes me so sad to read the nightmare lives so many of us live with RL 😞 I understand what I am doing is going against all that has been explained in this forum about augmentation from Pexola!! As I have said I was as desperate as you sound so was willing to give it a try. So far it is 7 days of absolute relief. I got a new script of 0.25mg. I did not break my 1mg tablets. I take one 3 times a day on its own. I wait at least an hour before I take any other medication. I am still taking my iron and VitC everyday and that too I wait for an hour before taking my Pexola.
It worked from the first day taking the 0.25mg three times a day.
As they have said on the forum a lot of other medications make our RL worse!! Not sure what other medications you on.
I sincerely pray and hope that you find the medication that works for you. 🙏🙏
Hi D well i take quite a few pills hi B/P, no thyroid gland ,small vein vasculitis ,sifrol i do not take lyrica now i just cant. i swell up and kidneys leak protein.. heart pill--- to slow it down i am sorry for your hurt and hope for now you have found some relief good luck i hope they keep on working i only take 1 ----0.25mg a night actually i only take 3/4s of it now i have cut 1/4 off my legs hurt and i cant sleep.... but im off to see the wizard of ozz [ doc ] she might have learnt a bit more since my last visit ...mean while i shall try to go to bed now its 10 oclock in Australia GOOD NITE ALL XXX
Hi let's hope your "wizard of Oz" (at least you still got a sense of humour) is going to have a relief plan for you. The withdrawal is "wordless" that I can attest to!!! I started it and needless to say took the "cowards" way out and went back on my Pexola. Please keep us posted on your progress. Sincerely hope it's your turn to be RL free ✊🏼✊🏼
well here i am.. didnt take long i reply to myself ......i had approximately 1/2 an hour in bed then the leg started i had my pill at 8 30 pm a bit of a twinge then i was ok i have had a foot bath with epsom salts and now i have covered my legs in Deep Heat a muscle rub put my pjs on wrapped my legs up in them but my arm is still jumping so im on here talking to myself xx
Hello just checking in on how you doing? Did you see the "wizard of Oz" any news? I was a bit nosy and checked your profile.......I am also a "cancer" survivor. I had a double mastectomy last year January 🙏had the all clear in December. To add, I also had heart surgery 5 years ago. Both were very traumatic and emotional, they both took about 6 months to heal. Unlike the RL I have suffered with for twenty years!!! As you aware from my previous chat I am 8 days RL free.......not sure how long but embracing it!! I sincerely hope you find the magic potion to heal you.
hi D i have had a broken computer just bought a new one today grandson came and set it up tonite. i couldnt get to see doc until mon 3 sept waiting times are terrible here. but gave blood today.see how kidneys are , had a mammiagram results were no evidence found so all good there i have been taking tamazepam in day and codiene at night but relaxing muscles has woken up bursitis in my hip which is sooooo painful i have to stop taking those two. i hope you are doing ok and keeping RLs free good luck forever
Always a relief when mammogram clear!! So sorry to hear you in pain 😞 we take one med to clear up an ache and the darn gremlin goes somewhere else grrrrrrr!!! I'm sincerely hoping your Wizard of Oz can give you answers and the meds to give you total relief from all your pain👏
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Hello, I'm 57 years old and I've suffered with RLS since I was 20, my name is Robert
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