Worried about taking medication for RLS

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reliefis#1
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Re: Worried about taking medication for RLS

Postby reliefis#1 » Thu Aug 31, 2017 1:45 am

I had my first visit with the neorologist, movement disorder specialist. After briefing her with my history with RLS I explained what I have learned on this condition and augmentation. I also explained that I have been on ropinirole 0.25 mg since June. Explained my RLS symptoms. Felt it was augmentation. Effectiveness of medication stopped around 3 am with RLS returning. Sensations coming on early around 6 pm. Involving my left arm. Also I have a crawling/electrical sensation on both legs, all day. She feels that I have not given the medication enough time to work effectively. Especially with only 0.25 mg. She advised me to up dose to 0.50 mg for 2 weeks. Then to 1 mg. If this didnt work for me, we would try a new medication . She said some patients use up to 4 mg of ropinirole. Is not 4 mg no longer recommended? I said I would not go there. Afraid of augmentation. My test results of ferritin level was 38 ng/mL. I explained that I read that RLS ferritin level should be at least 75 to 100 ng/mL. No recommendations were given except I should be on iron medication. She did not recommend IV for iron. I can't take iron tablets because I have gastritis. I researched on line and found iron supplement in capsule form called iron bisglycinate for sensitive stomachs. Will try it tonight. I also found the site for John's Hopkins RLS Research Center in Delaware. They take appointments for evaluation. Iam thinking of making an appointment with them. So tonight Iam taking 0.50 mg of ropinirole. Unwillingly!! Iam desperate for relief. But, I wont go beyond 1 mg. Even at 1 mg, I am afraid. The doctor is familiar with augmentation so hope she is ready to help me if that happens. Thank you all for the advise. You truly helped me prepare for this visit. She didn't tell me anything new about RLS that I didn't already read from all of you. Thank you all very much. God bless.

badnights
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Re: Worried about taking medication for RLS

Postby badnights » Fri Sep 01, 2017 5:02 am

It's odd how different doctors react. Patients who've experienced augmentation, or read about it and imagined it, will do anything to avoid it, but lots of doctors don't see it as a big problem and will casually bump up your meds even when you're showing signs of augmentation, disregarding the evidence that it only gets worse if you bump up the dose.

The problem, I know, is that the evidence is mostly anecdotal, and is countered in their minds by the recommendations of some specialists to raise and split the dose at least once before leaving dopamine agonists, by the misunderstanding printed and parroted in so may places that augmentation takes months to develop, and by the lack of consensus in the various recommendations for treatment. Still, it leaves me hollow, what they do. I want each and every one of them to walk in my shoes for a few days - preferably my shoes when I was augmenting, but even now, so they could see what severe WED/RLS is like, and if this is severe, then what the heck was it when I was augmenting? What word is there for severe times itself multiple times? Nightmare? No, because I've never had a nightmare that bad.

I hope the iron bisglycinate works for you. Did she recommend it, or did you get that on your own? What were her recommendations regarding your ferritin level? You should regard it as critical, no matter what she said, because the evidence is compelling for a link between low ferritin and symptoms severity, and between low ferritin and likelihood of augmentation. It is quite possible, if your augmentation doesn't proceed far, that you will be able to use ropinirole without augmenting once your ferritin is up - but getting there while using the ropinirole (and while augmenting) is perhaps asking too much.

But the part of your plan that holds out the most hope is a visit to Johns Hopkins. Move heaven and earth to get there.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

reliefis#1
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Re: Worried about taking medication for RLS

Postby reliefis#1 » Sat Sep 02, 2017 2:04 am

Thank you for your input. Yes I was quite upset when I left that doctor's office. I waited over a month to see her. Yes, the iron bisglycinate works. I researched the information. I've taken it three days now and have no gastrointestinal problems or constipation. I also researched infomartion on foods high in iron. Fortunately much of this food is also high in fiber such as beans, fortified cereals, dark green vegetables etc. She offord no guidance on the ferritin level. Just to take iron supplements. Told her about my digestive problem. I was waiting for her to tell me about the iron IV but she did not. I told her about the iron bisglycinate (known as the gentre iron). She also recommended I speak to my gastrointestinal doctor about the iron. She seemed set back about the fact that I had so much information on RLS. When she said my ferrin level was 38 and normal , I told her that it should be 75 to 100 or higher for RLS patients.
Yes I'm determined to get an appointment at John's Hopkins. In the meantime I think I can work with this doctor. I just have to be strong and not fall for her love with ropinirole. Iam determined to get off this medication. We need to challenge these doctors when we know that their advice is harmful for us. They should respect us for making the effort to become educated about our medical condition. Especially like one such as RLS. Most have no idea. I don't know what alse I can take, but hopefully if I get in at John's Hopkins I can get some guidance, a script and hopefully continue their advice. Will let you know. Thank you. God bless.

Polar Bear
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Re: Worried about taking medication for RLS

Postby Polar Bear » Sat Sep 02, 2017 5:20 pm

I am very glad that you were well informed when attending your appointment and were able to challenge your doctor with regard to ferritin. You are likely to find that you will be an Educator which is all to the good if your GP doctor is willing to work with you while you await an appointment at John Hopkins. :thumbup:
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

badnights
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Re: Worried about taking medication for RLS

Postby badnights » Mon Sep 04, 2017 6:16 pm

How much iron are you taking? in terms of elemental iron? Just so you know what might happen - I was initially taking about 30 mg as gluconate, and it didn't seem to have much effect (but in retrospect it may have). I changed to about 30 mg in sulfate form, and then 60 mg, during the time in which my ferritin rose from under 20 to over 60. I stopped getting ferritin measures (doctors aren't curious to learn the effects like I am) but increased symptoms led me to try increasing iron, so now I am taking 3 pills daily (66.7 mg elemental iron each). If I drop by one pill, or even if I drop one pill every second day, I notice it after a few weeks as worsened symptoms.

Have you told your doctor - this one you think you can work with - that you're seeking an appointment with the RLS Quality Care Center at Johns Hopkins? If you want to keep working with her, and even develop a good relationship with her, be sure to keep her in the loop and get her opinion on the things you do concerning your WED/RLS care.

It is not at all unusual or even wrong for doctors to be poorly informed about a disease. What marks the good from the bad is their attitude toward learning more when they encounter a patient who has the disease, or who is struggling under the standard treatment and needs something different.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

reliefis#1
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Re: Worried about taking medication for RLS

Postby reliefis#1 » Tue Sep 05, 2017 2:04 am

Iam taking Iron Bisglycinate (chelated) 25 mg. Brand name is Solgar. Should be taken with a meal. I read that iron supplements should be taken on an empty stomach. This supplement is formulated for enhanced absorption and gentle to the digestive system. So it says. No stomach problens or constipation yet. Is anyone familiar with this type of iron. It's only 25 mg. I see my gastrointestinal doctor tomorrow so I'll check with him about the iron IV.

This is all new for me. I don't think I have accepted my situation yet. Took clonazepan for years. It stops working so I stopped taking it. Went through hell with withdrawals and have not found a substitute medication that works for me yet. Terribly afraid of ropinirole and augmentation. Seems as if my new dictor is sold on ropinirole. I really want to get off this drug. For 15 years I took clonazepan and it worked. Never thought about RLS all those years. Just knew that the medication worked and helped my insomnia. Since then I feel terrible. Especially in the evenings. Always wake up 3am and no more sleep. RLS returns. Daytime is not so bad. Iam always busy and on my feet. But nighttime is now a challange. I sometimes just lay awake in bed until daybreak. New challenge I guess. I'll get through it.

reliefis#1
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Re: Worried about taking medication for RLS

Postby reliefis#1 » Sun Sep 17, 2017 2:45 am

Need suggestions on what medications will me get off ropinirole. Iam augmenting. Terrible symptoms. Been taking 0.50 mg ropinirole. My new neorologist suggested I up my doze to 1 mg. I can't do that. How can she not understand what Iam going through? If anyone has augmented on ropinirole and used other medication to help with the withdrawal, please let me know.

Polar Bear
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Re: Worried about taking medication for RLS

Postby Polar Bear » Sun Sep 17, 2017 10:11 am

This takes you to a link in badnights sigature providing iformation on how to treat augmentation. There are varying opinions as to whether you should stop the ropinerole cold turkey, or reduce it gradually. Cold turkey is likely to be quicker in the long run but is hard to do. Tapering actually might not be a lot easier because as soon as you reduce the DA your symptoms are no longer fully controlled anyway. You need an opiod to ease the withdrawal and the like of Gabapentin may also help, but Gabapentin won't be sufficient on its own.

download/file.php?id=31

Opiods is deemed the way to go and an understanding doctor is your friend.
Do you have this book, it is easy to read and can be used for discussion purposes with your doctor.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon.

Do you think your doctor would be amenable to using this book to guide her in the treatment of Augmentation and withdrawal.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

badnights
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Re: Worried about taking medication for RLS

Postby badnights » Mon Sep 18, 2017 1:44 am

Hi reliefis#1
You might need to increase your iron dose, assuming your doctor OK's it, to get a meaningful increase in your ferritin.

I know - lots of us here know - the kind of torture you're in.

The link below my name at the bottom of this post will lead you to a post where I've collected a number of papers having to do with augmentation, ferritin levels, and use of opioids to treat refractory and augmented WED/RLS. These papers are useful to bring to your doctor. The ones that are bold red (as opposed to just red) are more important - but even so, it's a lot to bring to your doctor all at once. I recommend you download them and read them yourself, or skim them, then decide which are best for you to bring.

If you had a copy of the Clinical Management book, that would be good to bring. In the link in my signature I note the pages on which there are the new recommendations for a maximum daily dose of ropinirole of 1 mg. And you can download an extract of the part where they talk about using opioids to treat augmentation (same as Betty linked to).

I would also recommend the Johns Hopkins website printout (sorry about the small font), Buchfuhrer's 2012 paper, and the 2016 editorial. Or - if you just want one - get the Medical Bulletin from the Foundation website, which requires you to be a member, but it is worth it just for that publication alone.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

reliefis#1
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Re: Worried about taking medication for RLS

Postby reliefis#1 » Sun Sep 24, 2017 1:31 am

Thought I would share my journey through augmentation with repinirole. Really I need words of encouragement. I feel terrible. The anxiety is overwhelming. I cry at times and have this strong feeling of anger. Lately I snap at everyone. I think it's the lack of sleep I have a constant urge to move my legs but now it feels like it's most of my body. Even my eye lids jump some sometimes. It's the anxiety that is getting me. The past week or so I wake up around 2:00 am. I think I sleep until that time with the help of Ambien. I get about 2-4 hours of sleep. But my brain is on override even then I stay in bed, but the legs and anxiety set in and I have to get up.

Looking for a new neurologist. My new one is not working. Not willing to work with me. She told me on my first visit to try repinirole for two weeks. If it did not help, she would help me try something alse. I called three weeks later. Augmenting pretty bad. She left a messege telling me to take four 0.25 mg (4 pills) repinerole pills. She wants me to get to 1 mg. Didn't do it. No other guidance. My prescription for sleep belsomra 0.25 mg ran out and per the insurance needed justification from the doctor to continue using it. It was helping, no side effects. She changed my script to Ambien 10 mg. I feel like I have a hangover in the morning so I cut the pill in half. Now Iam having extra palpitations so I will see my cardiologist on Monday.

One ray of hope is that I finally got to speak to someone at John's Hopkins University Hospital Movement disorder department in Delaware. They had me fax my medical records, insurance info etc. There is only one movement specialist who takes out of state patients. Praying I can get in. I need help with this nightmare.

What is the average time on augmentation from repinirole. I think I have been augmenting for over a month. I've stayed on 0.25 mg and now Iam on 0.50 mg. Worked for while but now I feel the RLS is stronger. I won't go to 1 mg like the neurologist recommended. This is the second doctor that has kept me on repinirole. Made up my mind to get off this medication. A friend recommended I try a natural stress medication called Gaba. I got it at the natural food store. Tried it this morning. It seems to calm my anxiety for few hours. Anyway. Iam hoping someone will give me good news on how long augmentation will last. I need to find a doctor who will work with me. Right know I feel pretty much on my own. Iam thinking of asking to try gabapentin at a low doze from my medical provider after I see my cardiologist. I know gabapentin comes is different types. Don't know what will be better for me. I know I have to use a prescription medication my RLS. Prabobly for the rest of my life.

Will take any suggestions.

badnights
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Re: Worried about taking medication for RLS

Postby badnights » Sun Sep 24, 2017 7:12 am

Hi reliefis
The world may seem like a dreadful place right now but you are in the throes of augmentation and there are not many things that are worse. It is a living hell. So of course you are anxious and snapping and angry. The anxiety, to me, seems like it's the same thing as the legs and arms (and eyelids!), only inside our brains. It's like everything inside, from toes to top, is riddled with anxiety.

Augmentation lasts as long as you keep taking the offending medication. Withdrawal is when you lower or quit the medication. Withdrawal lasts a different amount of time for each person, but generally, if you quit, one to three weeks. I got over the worst of it in 5 days, though it did drag on after that. The very worst was the first three days with no sleep except one hour in an armchair at some point.

I do hope you get in at Johns Hopkins, but meantime you can try emailing Dr Buchfuhrer, who is a WED/RLS specialist affiliated with the southern California support group (http://www.rlshelp.org) and answers patient emails (somno@verizon.net). You can see postings of lots of the emails and his replies on the website. Some of our members have traveled to California to see him, simply because they couldn't find anyone else who understood how to treat augmentation, and Dr B does understand the level of torture we experience.

Is kratom legal where you are? A google search should tell you. It can be ordered online. I think Red Vein Borneo is the kind most people here use. If you search kratom in the search bar at top right you will get oodles of posts; you have to sift through them to get the useful ones. Kratom is effectively an opioid and it will treat some of your augmentation.

If you're thinking of gabapentin, you might consider Horizant instead, which is more expensive but works more effectively (gabapentin tends to be erractically absorbed).

I feel terrible for you. I know you feel totally alone because your doctor, who is supposed to be helping you, is clueless, and probably everyone around you has no idea of what you're going through. But we do! Lots of us have lived through augmentation and DA withdrawal. Dr. B says that 98% of people with WED, maybe more, can live good-quality lives with the proper treatment. The only barrier is to find a doctor who can provide that treatment. So push for Johns Hopkins, email Dr B (or even go there if you can!), continue to look for another neuro, and meanwhile keep trying to work with your current neuro. Keep as many pans in the fire as you can! And get ahold of some kratom if you can. BIG HUGS.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

legsbestill
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Re: Worried about taking medication for RLS

Postby legsbestill » Sun Sep 24, 2017 11:21 pm

So sorry you are having to go through this misery. Am blown away by your strength and resilience in resisting the urging of TWO neurologists to increase your dose. You are absolutely correct to do so. Increasing the dose will definitely lead to worse, more protracted suffering down the line.

I would second everything Beth has said. She is spot on. I find Kratom very helpful. I use it even though it is not legal where I live. However, I would imagine even Kratom will struggle to be hugely helpful until you get off the ropinerole. This is most likely true also of gabapentin/pregabalin at this stage. Some people find very these drugs very helpful (sometimes on their own but more often as part of a cocktail of drugs). However, I would imagine they are unlikely to help hugely while you are augmented on ropinerole. Only relatively potent opioids cut the mustard at this stage. I hope you get an appointment with Johns Hopkins. They seem to be immensely knowledgeable.

I have no personal experience but I note that another poster, Aipulu, has had a positive impact on his/her augmentation on a different dopamine agonist by taking Naltrexone. Maybe that would be worth a try - if your medical caters will prescribe it - in the meantime.

reliefis#1
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Re: Worried about taking medication for RLS

Postby reliefis#1 » Sun Oct 08, 2017 4:36 am

I haven't posted for a few weeks but I need to get some direction from you. You are the only ones who understand what augmentation is all about. Not even my husband although he is trying to help me. I am still trying to get off ropinirole. Been on .025 mg for a few weeks. Although I have always stayed at a low doze. Mostly at 0.25 mg. Iam now at 0.125 mg tablet. First night was pure hell. Now its tolerable. I finally broke down and went to see my general doctor since she was the first one who prescribed ropinirole. I broke down crying in her office and believe me it takes allot to make me cry. Iam a retired U.S. Army Sergeant Major of 26 years. When you have troops you are responsible for, you don't cry. At least not in front of anyone. She must have felt badly for me because she decided to help get off the ropinirole. She prescribed 300 mg gabapentin (Nourantin) and continue the 0.125mg ropinirole for a few more weeks until Isee a sleep doctor she is referring me to. Also prescribed zolpidem 10 mg for sleep. The 300 mg gabapentin worked for about a week. Now it's not strong enough. She prescribed 600 mg. This has helped but its causing weight gain, dizziness and blurred vision. I've gained 7 pounds in less than two weeks.


Has anyone had a weight gain problem with gabapentin? Will these side effects eventually work themselves out. If not, I'll have to try another medication. Any suggestions on another type of medication. I have to find something to help me. RLS is not occurring as strong. But, to be honest, Iam almost afraid to completely get off. Afraid of worse RLS once Iam off completely. I puchased the Kratom. It's legal here. There are even smoke shops were you can buy it. But, Iam not yet sure on how or when to use it. Any input will be appreciated. Have not heard from John's Hopkins yet. I plan on following up with them. Thank you so much for being there for us and for each other. God bless.

badnights
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Re: Worried about taking medication for RLS

Postby badnights » Wed Oct 11, 2017 4:19 am

You're courageous and strong! I am humbled by your determination.

You're on the right path. Maybe pregabalin (Lyrica) would not have the same side effects. It is the same class of medication as gabapentin, and is commonly used for RLS/WED. 600 mg gabapentin might be equivalent to only 150 mg Lyrica, something like that (less).

Hopefully an actual kratom user will chip in here, but I think most people start with 1/2 tsp or 1 tsp in orange juice (wouldn't warming it make it mix in better?) (it tastes disgusting), and take it in the evening an hour or so before symptoms normally start, or before bed (since you probably have symptoms all day now). You need something to ease the withdrawal if you're trying to function like a normal human being at the same time. It's nuts. And the anti-convulsants like gabapentin and pregabalin just don't cut it. Maybe after you're re-set from the ropinirole, but not now.

You hang in there, brave lady.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

reliefis#1
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Joined: Wed Jun 28, 2017 2:59 pm

Re: Worried about taking medication for RLS

Postby reliefis#1 » Wed Oct 11, 2017 8:18 pm

Thank you for the guidance on the kratom. Will try tonight. My doctor put me on 300 mg of gabapentin. After one week it stopped working. She then put me on 600 mg. It may be my system but this medication is also giving me terrible side effects. I have been taking it since September 25, 2017. Not even one month! I gained almost 10 pounds. My gastrointestinal system is on fire. I mean from my colon to my mouth. Even my gums hurt! Tomorrow my gastrointestinal doctor is giving me an endoscopy. Iam almost afraid to tell my doctor. Don't want her to think Iam a hypochondriac. I don't think she has the experience in treating someone with RLS.

Has anyone stopped using gabapentin? Would appreciate some guidance on getting off. Although it has not been a month since I started taking it. I read I should not stop cold turkey. Even if I have been on it for less than a month. Has anyone tried other medication besides ropinirole or gabapentin. I will check out the pregabalin. I know I have to use some kind of medication for my RLS. Can't go without meds. Iam seeing a sleep dissorder doctor next month. Still too long to go without medication. Opioids are out of the question. Doctor already told me. Don't know what I would do without you all. I have always been used to dealing with my challanges on my own. That's who I am. But this is a challange too big to go it alone. Even my husband doesn't know how to help me. Except to listen to me when I complain about my discomfort. God bless you. You've have all been a blessing.


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