Question about pharmas, augmentation, etc...

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.

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knoxtnhorn
Posts: 28
Joined: Wed Feb 12, 2014 12:05 am

Question about pharmas, augmentation, etc...

Post by knoxtnhorn »

I've searched the board and didn't see this specific topic covered.

I was wondering about something. So I started on RLS prescrips about 5 years ago due to, what I thought to be, pretty severe symptoms of RLS. What I didn't anticipate was that my definition for severe was severely underestimated. What I mean is that the symptoms I've been dealing with over the past year, using different meds, are FAR, FAR worse than the symptoms I had when I first began taking meds. Quick history:

Started Mirapex around 2013.
Switched to Requip around 2015.
Switched to Neupro several months ago.

Each switch coincided with the previous med losing effect. Now with Neupro, I'm having about a 60% success rate meaning 40% of the time I'm in excrutiating pain and terrible, sleepless nights not to mention side effects of overeating and leg pain. I've added Trazadone for the past 2 months with varying levels of success.

I'm set to see two different doctors in November. The first is a neurologist; the second is a sleep doctor.

So my question is thus: If I were to completely wean myself off of all drugs, would my symptoms go back to what they were before I took any meds or have I created a cycle in which my body will always "need" the drugs for normalcy? I'd really like to go back to where I was before I started the prescrips. I had occasional bad nights but they were nothing compared to what I'm dealing with now.

JimmyLegs44
Posts: 90
Joined: Thu Oct 01, 2009 5:24 am

Re: Question about pharmas, augmentation, etc...

Post by JimmyLegs44 »

knoxtnhorn wrote:If I were to completely wean myself off of all drugs, would my symptoms go back to what they were before I took any meds or have I created a cycle in which my body will always "need" the drugs for normalcy?


Theoretically, this should happen eventually. It will likely be a long and unpleasant process, though. Look at posts dealing with dopamine agonists and augmentation and you should find plenty of posts to read on this topic. They refer to "baseline symptoms" which I believe is what you are talking about.

For me, I attempted a drug holiday of a few weeks about 6-7 months after weaning myself off of Mirapex (was taking for 13-14 years and severely augmented). I found that my symptoms were similar to what they were before starting on Mirapex, if not slightly worse, probably due to natural progression of the disease. I ultimately decided drugs were needed to have the quality of life that I wanted, so I'm now taking 150 mg of Lyrica. My doc at Mayo prescribed 300 mg of Lyrica, so I consider it a small victory that I'm getting by on a lower dose.

Best of luck to you. You are in good company here...lots of folks have been through the wringer with dopamine agonists.
The best way out is always through. - Robert Frost

knoxtnhorn
Posts: 28
Joined: Wed Feb 12, 2014 12:05 am

Re: Question about pharmas, augmentation, etc...

Post by knoxtnhorn »

Thanks for the reply.

Based on my pre-drug symptoms, I'd say I had symptoms of a 2 on a scale of 10.
After being on the prescrips for 3+ years, I'd say the current breakdown is per my episodes at night are:
30% at a 2 or less
30% between 3-7
40% 8+

I mean, if I was on a 2 or less on any given night before starting the prescrips, I'd be more than happy to go back to that over what I've been dealing with lately. I guess I had nothing to compare my symptoms to until I got deep into the meds.

ViewsAskew
Moderator
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Re: Question about pharmas, augmentation, etc...

Post by ViewsAskew »

I never stayed off long enough to be drug free of all drugs. I did stay off of different classes for up to a couple years. I did not go back to baseline. But, I think mine was particularly unique. I only had RLS a couple times a month - I took the drugs for PLMS. That worsened the RLS to daily within about ten days. Still daily 12 years later, but at least not 24/7 now - more like 18-7 ;-).
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: Question about pharmas, augmentation, etc...

Post by badnights »

The official line is that you;ll return to pre-augmentation level of symptoms after your body adjusts to the absence of DAs, which is what JimmyLegs found. But some of us feel that we were permanently worsened by augmenting. So who knows. It may be hard, especially if you don't have the support of a knowledgeable doctor, but after the DA is out of you and your body has had a chance to adjust, you should see a much lower level of symptoms, if not pre-med level.

EDITED TO ADD:
Since it may turn out that you still need something to have a decent quality of life, discuss the options with your doctor beforehand. Probably DAs are out as a primary treatment, but might still be useful as part of an alternation, or as-needed with a different class of medication as your primary help.
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.

knoxtnhorn
Posts: 28
Joined: Wed Feb 12, 2014 12:05 am

Re: Question about pharmas, augmentation, etc...

Post by knoxtnhorn »

Thanks for the input.
I dropped my neuro appt but kept my "sleep specialist" appointment for the end of November.
As I'm frequently injured, I've been "hoping" for an injury bad enough to require a week or two of pain meds so that I could ween myself off the DA's. I know that sounds borderline crazy but I'm pretty sure most of y'all understand.
At this point, I just want off the meds but fear the 2-3 week withdrawal.

Yankiwi
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Location: West Coast, South Island, New Zealand

Re: Question about pharmas, augmentation, etc...

Post by Yankiwi »

"borderline crazy" is something anyone with bad-severe RLS can easily understand.

ViewsAskew
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Location: Los Angeles

Re: Question about pharmas, augmentation, etc...

Post by ViewsAskew »

Yankiwi wrote:"borderline crazy" is something anyone with bad-severe RLS can easily understand.


Ditto!
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: Question about pharmas, augmentation, etc...

Post by badnights »

As I'm frequently injured, I've been "hoping" for an injury bad enough to require a week or two of pain meds so that I could ween myself off the DA's. I know that sounds borderline crazy but I'm pretty sure most of y'all understand.
Not crazy! What's crazy is that doctors can't or won't prescribe medications known to provide relief and typically without dangerous side effects (unlike the DAs they happily prescribe). What's crazy is that you have to prevaricate, and might end up suffering extremely for 2 weeks if you can't get a prescription. I hope you can weather it in any case, because improvement lies on the other side of that obstacle.
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.

stjohnh
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Location: Palo Alto, California

Re: Question about pharmas, augmentation, etc...

Post by stjohnh »

badnights wrote:
As I'm frequently injured, I've been "hoping" for an injury bad enough to require a week or two of pain meds so that I could ween myself off the DA's. I know that sounds borderline crazy but I'm pretty sure most of y'all understand.
Not crazy! What's crazy is that doctors can't or won't prescribe medications known to prvide relief...


If you live in a state that allows medical marijuana you might consider trying it. It frequently doesn't help very much with pain but many users find it helps with the sleep problems for RLS. Also kratom is legal in most states and it acts somewhat like a mild opiate. It can help bridge the gap while you're trying to get prescription medicines that you require, also it can help you stay on a lower dose of dopamine agonist if you use kratom and a dopamine agonist together.
Blessings,
Holland

Sojourner
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Re: Question about pharmas, augmentation, etc...

Post by Sojourner »

Crazy is providers who won't prescribe medications that they know or believe will provide relief but are too afraid or ?? to do so and want to shift that burden on to someone else. Maybe that's what someone just said. In that case, ditto!

Wishing all who visit here some peace this night.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

knoxtnhorn
Posts: 28
Joined: Wed Feb 12, 2014 12:05 am

Re: Question about pharmas, augmentation, etc...

Post by knoxtnhorn »

Thanks for the input. I can't do marijuana as I'm a teacher.
My latest "fun" with the Neupro is that I'm nauseous pretty much all day. Apple sauce for breakfast and lunch is all I can stomach. I mean, I'm glad that I'm able to lose a little bit of weight; however, at times it transcends just not being hungry. The dizziness, nausea and lethargy makes it hard to teach at times. Keep in mind, I'm very, very active (cycling, soccer, triathlon) so I'm not used to just wanting to curl up into a ball.
Anyway, just wanted to check in. I'll keep y'all updated in case my experiences help someone else on here in the future.

Stainless
Posts: 274
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Re: Question about pharmas, augmentation, etc...

Post by Stainless »

I had 25 years of experience with rls before I saw a doctor about it. He put me on .5mg clonazepam. Over the next 20 years my dose slowly went up to 2 mg and I assumed it was resistance to the drug but I was sleeping well, had no hangover and just dealt with late afternoon and early evening rls. I now think that was just the progression of the disease that I only finally found out about on this forum. I finally went on an additional mg just when I needed it but was warned by that doctor he would not increase it any more and I would have to eventually do something else. After hearing that and reading a Canadian study that said clonazepam may increase chances of Alzheimer's, I asked my new doctor how change to another medication. After six months of hell getting off clonazepam and being pretty clean of any one drug, I tried nothing but supplements and had a few weeks of pure hell. I tried everything (except opioids) and rls ruled my life.
I would have never believed it but now I am back on 2 mg clonazepam and doing better than I have for 1 1/2 years. I believe DAs changed the nature of rls for the worse. Back on clonazepam the nature of rls quickly changed back for the most part but once in bed I have an hour or two of significant rls where the clonazepam used to just knock me out. 3 months into it I'm hoping it will get a little better but it may not. I would never recommend a benzodiazepine like clonazepam to anyone but I seem to do well on it. As far as Alzheimer's, my research shows the damage is already done if it really does increase my chances and some latter studies have found no correlation.
My wife who I married soon after starting this drug says clonazepam dose not stop my movements while sleeping but calms them down on good nights. On bad nights she moves to the other room. I posted this because I think the progression of the disease makes it nearly impossible for me to go back to no drugs. I wish you luck in finding peace with your rls. Rick

legsbestill
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Location: Dublin Ireland

Re: Question about pharmas, augmentation, etc...

Post by legsbestill »

I am currently experimenting with various treatments having come off mirapexin earlier in the year after 14 years. I had a short (and very painful) period of no drugs - maybe 3 or 4 weeks like JimmyLegs. The immediate post-d/a period was very tough and symptoms definitely settled down from that. It is now 5 months since my last mirapexin and I think my symptoms have improved fairly steadily throughout that period - even in the last month or so things have got a bit better.

Since coming off mirapexin, I have tried: pregabalin (lyrica) which had no impact and fairly unpleasant side effects (though in fairness I took this as I was coming off mirapexin when things were very bad - I am wondering if it would be worth trying again now that things have settled down so much), neupro - like Knox it was only effective some of the time and I gave up on it in the end - didn't want to start taking more in case of augmentation - and Oxycontin - very effective on rls symptoms provided I take 30mg but some problems with side effects and had fairly difficult withdrawal symptoms when I decided to come off it (though not nearly so bad as coming off mirapexin).

In the last month I moved between OxyContin and neupro, using very low doses of each and at times used nothing at all. I always have symptoms when I am on low doses or nothing but not like earlier in the summer - I can even stay in bed at night for long-ish periods, although I will be twitching away, whereas before I was out of bed pacing for most of the night. I have been gradually moving back to relying on OxyContin - took 30 mg last night for first time in ages and had undisturbed sleep from about 2 am - first time in a long time - bliss! I will probably take the same tonight - it is so hard to resist the lure of a twitch-free night. It is the most effective in dealing with the legs and provides me with the closest to a normal life of any of the drugs I have tried.

knoxtnhorn
Posts: 28
Joined: Wed Feb 12, 2014 12:05 am

Re: Question about pharmas, augmentation, etc...

Post by knoxtnhorn »

Another weird side effect I have is the rash.

Now, I understand that some will have a dermal reaction to the patch but what's weird is I went 2 months without any reaction. Now, I've got raised rashes, almost burns, wherever the patch has been placed for 24 hours. I mean, it's the least of my worries but still a nuisance.

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