Weaning off medications

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
Oozz
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Re: Weaning off medications

Postby Oozz » Thu Jun 13, 2019 1:05 am

This is saying that’d the iron injection is safe I’d like you are under 300? Am I correct in reading this?

stjohnh
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Re: Weaning off medications

Postby stjohnh » Thu Jun 13, 2019 3:58 am

Oozz wrote:This is saying that’d the iron injection is safe I’d like you are under 300? Am I correct in reading this?


Not exactly, but sort of.

Well, this is where the lack of evidence, pro- and con- impacts the consensus recommendations. Remember this paper is written by a group of experts, supposedly evaluating the best possible clinical EVIDENCE (not theories) and recommending a course of action to non-expert doctors.

Also note that most IV Iron infusions are given by hematologists as treatment for complex cases of iron deficiency anemia which nearly all have very low ferritin values (<20). Many hematologists don't even know that different organs in the body have differing iron requirements, some don't even know that iron is required for anything other than making hemoglobin to carry oxygen.

The paper discusses one study that excluded patients with ferritin over 300, but most of the studies they examined used an exclusion criterion of ferritin over 75 or 100. So what this paper is saying is that there is a little evidence that people with a ferritin between 100 and 300 can get IV iron safely and have significant improvement, there is more evidence that RLS patients with a ferritin of 100 or less can get IV iron safely and have a good chance of beneficial response. So their official recommendation, for initial IV iron therapy, is to limit it to those with a ferritin of 100 or less, though most likely, people with ferritin between 100 and 300 can get it safely and have a good response. There just isn't enough data to say for sure. The real crux of the problem is that ferritin is not a good test for brain iron, and there currently is not one.

It is a delicate and complex process trying to get doctors to do something different than what they have been doing. IV iron is "different" for treatment of anything other than iron deficiency anemia and writers of consensus papers have to be VERY sure their recommendations have very good clinical support or other doctors will not take them seriously. I fully expect that better tests of brain iron or surrogate tests of brain iron will be available in the next few years, enabling RLS patients to get IV iron that most today would not be able to get because of a "normal ferritin."

I'm sorry there isn't a simple answer to your question, ask again if I haven't been clear.
Blessings,
Holland

JulHer1968
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Joined: Mon Jun 18, 2018 4:48 am

Re: Weaning off medications

Postby JulHer1968 » Thu Jun 13, 2019 4:45 am

Very helpful topic. I quickly weaned myself off of 6 mg of ropinirole several years ago. It took me a month of sleepless, restless nights to get back to my baseline. Currently I am weaning myself off of 20 mg of methadone due to increments of tolerance to opioids. So far, I have managed to get down to 10mg. Its almost as intense as getting off ropinirole. I am not experiencing typical opiate withdrawal symptoms. As with the DA's, I am having a significant exacerbation of the RLS symptoms, despite having recently added a 3mg Neupro patch. I guess I will eventually see how much is the lack of methadone and how much is the RLS. I'm hoping that I in the future, I will be able to switch back and forth between DA's and opioids without getting into this cycle of repeatedly bumping up the dose once it starts losing effectiveness. Also, I find myself in a dilemma: wean slowly or get it over with. Because methadone has such a long half life, I feel like this could go on forever, and It is not how I want to spend my time. Any insights are welcome. What a gift this community is!
Julie

ViewsAskew
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Re: Weaning off medications

Postby ViewsAskew » Thu Jun 13, 2019 5:47 am

JulHer1968 wrote:Very helpful topic. I quickly weaned myself off of 6 mg of ropinirole several years ago. It took me a month of sleepless, restless nights to get back to my baseline. Currently I am weaning myself off of 20 mg of methadone due to increments of tolerance to opioids. So far, I have managed to get down to 10mg. Its almost as intense as getting off ropinirole. I am not experiencing typical opiate withdrawal symptoms. As with the DA's, I am having a significant exacerbation of the RLS symptoms, despite having recently added a 3mg Neupro patch. I guess I will eventually see how much is the lack of methadone and how much is the RLS. I'm hoping that I in the future, I will be able to switch back and forth between DA's and opioids without getting into this cycle of repeatedly bumping up the dose once it starts losing effectiveness. Also, I find myself in a dilemma: wean slowly or get it over with. Because methadone has such a long half life, I feel like this could go on forever, and It is not how I want to spend my time. Any insights are welcome. What a gift this community is!


Tough one. I weaned sort of in the middle regarding rate. I used a DA, after iron infusions, so that I was sure I wouldn't augment quickly, but as you noted, it wasn't enough. I also used kratom to help with the physical withdrawal symptoms that occurred at the end - for me, it felt like RLS in you arms and upper body, but was a bit different. Possible that what you are feeling is the withdrawal and not the RLS. It was long enough ago that I do not remember how I could tell them apart, but something was different about it... I stayed off a month - wasn't really enough - but I HATE the side effects of the DAs and I just wasn't to have some normalcy.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: Weaning off medications

Postby badnights » Fri Jun 14, 2019 4:21 am

I am not experiencing typical opiate withdrawal symptoms. As with the DA's, I am having a significant exacerbation of the RLS symptoms, despite having recently added a 3mg Neupro patch. I guess I will eventually see how much is the lack of methadone and how much is the RLS.
Your exacerbated RLS/WED might be the withdrawal, which is typically akasthisia much like RLS/WED, plus nausea. Youre not withdrawing badly enough to have the nausea. Maybe. How recently did you add the patch? I augmented within days on ropinirole - it is possible I suppose that someone could augment quickly on rotigotine.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

JulHer1968
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Re: Weaning off medications

Postby JulHer1968 » Fri Jun 14, 2019 6:51 pm

I have been on Neupro for about 5 weeks and pretty quickly titrated from 1 mg to 3 mg. Fortunately I''m not having any problems with it. Once I get off of methadone, I guess it will soon be apparent what is RLS and what is opiate withdrawal. Interestingly, I have spoken with a number of patients with opiate use disorder who say that methadone withdrawal is the worst. Presumably this is because of the long half life - a double edged sword. I guess I will take it slowly. Thanks to you both for your comments.
Julie

Rustsmith
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Re: Weaning off medications

Postby Rustsmith » Fri Jun 14, 2019 7:03 pm

JulHer1968, remember that those with opiates use disorder are also taking a much higher dose of methadone that you are. I stopped taking methadone last fall cold turkey from 5mg. I didn't really notice that much in the way of opioid withdrawal, but the gabapentin and 0.25mg pramipexole that I was taking was no match for my severe RLS.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

JulHer1968
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Re: Weaning off medications

Postby JulHer1968 » Sun Jun 16, 2019 4:58 am

Certainly a valid point. I'm pretty much waiting to see what is an exacerbation of the RLS, like a rebound affect, due to stopping methadone, and what is uncontrolled RLS symptoms due to the severity of the disorder. I'll be keeping in touch with my doctor. Hopefully she will have some thoughts.
Julie

Obewan
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Re: Weaning off medications

Postby Obewan » Wed Jun 19, 2019 2:52 pm

Holland,
Thank you for your replies to my questions. I do understand the difference between ferritin levels in my blood and the level of iron in my brain as it relates to RLS. The comment I was making about my ferritin level being in the normal range has to do with the fact that the medical community does not advise that you take an oral iron supplement if you have a ferritin level in the acceptable range. The article you shared takes the same position. Nonetheless, I started five days ago taking a 325mg oral iron supplement at night along with 100mg of Vitamin C, which is the approach recommended for those with low ferritin levels. I should also point out that I have been on a daily 4mg Neupro patch since December, which alone was not effective in dealing with the RLS symptoms. Miraculously, I have had no RLS symptoms four out of the past 5 nights. I can't recall the last time I had such good experience with my sleep. On the one night that I did experience some symptoms, it was much milder than what I had been experiencing.

Naturally, I am not sure whether this will be sustainable. I have scheduled an appointment with my regular doctor to get his advice about the dangers of taking the oral iron supplement each day. However, if this approach keeps working for me, it will be hard to stop following it. I also recognize that RLS sufferers react differently to various treatment approaches and that what is currently working for me may not work for others.

Frunobulax
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Re: Weaning off medications

Postby Frunobulax » Thu Jun 20, 2019 8:41 am

My cousin used to take dopamine agonists for a short time. He now manages with vitamin B12 - he still has symptoms but he doesn't need prescription drugs.

badnights
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Re: Weaning off medications

Postby badnights » Fri Jun 28, 2019 5:43 am

I'm pretty much waiting to see what is an exacerbation of the RLS, like a rebound affect, due to stopping methadone, and what is uncontrolled RLS symptoms due to the severity of the disorder.
One possible effect you are neglecting is augmentation. You increased your Neupro dose rapidly to a level that may be causing augmentation. I'm not saying you probably are or are not; just to keep it in mind along with opioid withdrawal and "baseline" RLS/WED severity.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.


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