Improved symptoms - what now?

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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legsbestill
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Location: Dublin Ireland

Improved symptoms - what now?

Postby legsbestill » Sun Dec 04, 2016 8:53 pm

I have an appointment with my sleep consultant in two weeks. I have not seen her since April when she took me off mirapexin (pramipexole). I had been on it for 10 years and with augmentation my daily dose was over 1.5mg. She prescribed Lyrica (pregabalin) to help with coming off mirapexin to a total of 600mg. I didn't get on well with Lyrica and it didn't help at all with the awful period after stopping mirapexin. My consultant failed to respond to my emails and eventually (after about 3 months) my GP (PHP) prescribed OxyContin. 30mg dealt with most rls symptoms and I got first reasonable sleep in months. Eventually my sleep consultant got in touch and suggested I start taking neupro - 2mg. She emailed me a script. I was anxious resuming DAs but wanted to reduce OxyContin intake so started them eventually. So now I have a stash of OxyContin, a stash of Lyrica and a lot of neupro in the house. I have experimented with various combinations of these and in recent weeks have finally achieved a system which works for me. Hooray!

In the meantime, my iron levels have been gradually increasing and my symptoms seem to be improving quite a lot. Maybe it took longer for me to achieve a base-line actual symptom position because I was taking a lot of mirapexin and for a long time, maybe it is the iron (from an initial 36 serum ferritin to nearly 80 now) or maybe that is just my physiology. It is now 7 months since I stopped taking mirapexin but I would say that my symptoms have definitely improved in the last 6 to 8 weeks even. Hooray! Hooray! I do continue to need medication however.

I am currently on 2mg neupro and until last Friday I was also taking 10mg OxyContin and 50 to 75 mg Lyrica (to induce sleep and counteract alerting caused by OxyC - I seem to tolerate Lyrica quite well at this dose). On Thursday evening last, I forgot to take the OxyContin and I didn't get any RLS so decided to stay off the OxyContin for the meantime (this is my second time eliminating OxyContin and it is not a picnic - ironically the worst withdrawal symptom being nocturnal restlessnes - but I like to establish just how much I need it). So now I am taking just neupro - 2mg which means I am currently right back on mono-therapy of DAs, a place I swore I wouldn't end up again. For now it is working perfectly so far as RLS is concerned.

Apart from a period of about 10 - 12 weeks after ceasing mirapexin, I have not had a significant problem with symptoms in the daytime or early evening and recently my symptoms have been solely in my legs - not body or arms.

Forgive me please those who have made the journey with me in my various posts dotted around the forum, for my repetition, and also those currently struggling with awful symptoms for having to plough through a long-winded account of how things have improved for me but I am really not sure what to do next.

I imagine it is only a matter of time before I augment on neupro. I think it is inevitable that I will need other, non DA drugs. I'm just not sure exactly what. I am not sure if my consultant has the power to prescribe methadone (there are limitations on who can prescribe it in Ireland) or even if I want to take it given that OxyContin works well for me (if I need it at all). In fact, I'm not even sure she will prescribe an opiate - she doesn't know yet about the OxyContin.

Just this week it was announced that our government is planning to legalise medicated marijuana in the near future. I am also wondering whether it would be worth driving to Belfast, which is a different jurisdiction, and obtaining some Kratom which I believe is legal there (it was made illegal here a few years ago).

Because I do not have symptoms other than at night time I'm not sure whether I need - or want - the coverage that neupro's 24 hour slow release provides (not to mention the expense). I wonder if it would be worth asking my consultant to resume mirapexin and introduce an opiate to manage mirapexin so that I did not take it all the time - thus avoiding augmentation (something like ViewsAskew)? Would it even be possible to manage with just mm and mirapexin?

In order to try and establish exactly how improved my symptoms are, I am planning to reduce to 1mg neupro (I am currently using 2 x 1mg patches) once the worst of the OxyContin withdrawal symptoms pass (don't really want to have to cope with them and RLS) and try managing with 1 mg neupro and Lyrica to a max of 75mg. In the meantime, any suggestions would be very gratefully received.

stjohnh
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Re: Improved symptoms - what now?

Postby stjohnh » Mon Dec 05, 2016 12:34 am

Legs, if possible I would get the dose of neupro as low as possible, using a small amount of oxycontin if you need it with the 1mg patch. I use (after augmenting on mirapex and washout period) the lowest dose mirapex 0.125mg plus kratom to control my jumpy legs. The kratom is somewhat like low dose opiate. With this I get good control of jumpy legs.

I used neupro for a while, but the expense and continuing rash made me go back to mirapex.

I found that marijuana helps jumpy legs only a little, but helps sleeping a lot. I think that is what most RLS patients have found. I take 10mg THC (as marijuana brownie) at 7:30 pm with my kratom and mirapex. At the same time I take 50 mg gabapentin. About 90 min later I get very sleepy and usually fall asleep 15 min after going to bed. At 11 or 12 when I get up to pee I take another dose kratom, 5mg THC, and 50mg gabapentin. The gabapentin works with the marijuana for sleep.
Blessings,
Holland

Rustsmith
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Re: Improved symptoms - what now?

Postby Rustsmith » Mon Dec 05, 2016 1:24 am

legs, I will second what Holland has said and add a bit. I also use a combination of gabapentin and marijuana for sleep. I also have not found either of them to help with the RLS movement issues, just the sleep side of the disease. I take 900mg of gabapentin and an edible form of marijuana (candy) that contains 2.5mg of THC. I should also mention that I am also using the gabapentin for migraine prevention, so my dose is probably higher than most and I do not have any side effects (assuming we aren't counting drowsiness as a side effect).

The important thing about medical marijuana is to understand how quickly the different forms work. Smoking the marijuana produces almost instant effects. These effects also fade within an hour or two. There are tinctures that are placed under the tongue. These take about 10 minutes to work and work longer than smoking. Finally the edible forms (like Holland's brownie and my gummie bears) take about two hours to become effective and last for 4 or more hours once effective.

So, the benefits that you can expect depend upon how you decide to arrange your treatment. In my case, I find that gabapentin only works for about 4 hrs. It helps me fall asleep, but about 4 hrs later I wake up and cannot fall asleep again. I am taking a high dose, so taking that much again 4 hrs later isn't something that is recommended. However, but using edible marijuana at bedtime, the marijuana is just starting to become effective when the gabapentin starts to wear off. So, with the combination I can fall asleep easily and stay asleep for about 6 hrs (which is when the marijuana starts to wear off). Six hrs of sleep is optimal, but it is better than what I was getting before I started using the marijuana most nights.
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.

ViewsAskew
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Re: Improved symptoms - what now?

Postby ViewsAskew » Mon Dec 05, 2016 3:05 am

Harder to do than to say....but I'd say just to enjoy the period you are in and deal with what comes next when it happens. I've found that the best laid plans often aren't where I end up..so planning doesn't always help. That said, I do like to know of options so that when I need them I can sort through them.
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.

Polar Bear
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Re: Improved symptoms - what now?

Postby Polar Bear » Mon Dec 05, 2016 10:14 am

Legs - My understanding is that Kratom is no longer legal in the Belfast/North of Ireland/UK as of April 2016. It certainly was the intent to add it to the banned substances list.
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

legsbestill
Posts: 348
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Improved symptoms - what now?

Postby legsbestill » Wed Dec 07, 2016 2:38 pm

Thankyou all so much for very helpful replies. I think you saved me a trip to Belfast, PolarBear! I remember now that I had already heard that it was now banned in UK.

Steve, it is thanks to another post of yours that I started using Lyrica to help overcome alerting/induce sleep and it was transformational - the starting point of a return to normal for me. Thanks also for your information about mm. It is not legal here yet but I have student off-spring who just yesterday presented me with what I have to assume is a less than wholly legal form. My own student days being many years behind me, I am not entirely sure how to convert the sort of green weedy looking substance into something I can eat but no doubt the internet will yield up suggestions.

Last night at about 4am, after 5 days of sleeplessness due to withdrawals from OxyContin, I cracked and took 10mg and had a lovely sleep. I'm not sure what I really thought I would gain by coming off OxyContin - I always knew I'd have to go back on it anyway - I suppose I was hoping to prove to myself that I can come off it. But at 4 am the game is not worth the candle so now I reckon I will stay on OxyContin and try to reduce my Neupro to 1mg as suggested. Holland, you seem to have mirrored my thinking in going from neupro back to mirapex. I am going to discuss this with my consultant. I just wondered, how long have you been back on Mirapex and what do you do to avoid augmentation?

QyX
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Re: Improved symptoms - what now?

Postby QyX » Wed Dec 07, 2016 4:28 pm

I am almost 32 years old and on opioids for RLS for about 5 years and a couple of months. Luckily I never had an issue about getting a prescription. I just was way to sick with severe lost of muscles and weight because of extreme sleeplessness that stopping opioids ever was a question.

However I never liked the perspective to stay on opioids forever. I fought a lots of battles with myself to see if the opioids are really really necessary and if there really isn't any other option for me.

And anyway ... what does it matter when you can come off opioids but the quality of life is miserable? Even with opioids quality of life won't be as good as without RLS.

And you will see: you already augmented once on a DA. So it is just a matter of time until you augment on Neupro. When it happens you can use OxyContin to stop the Neupro. When you think about using Mirapex then, you will very likely augment much faster then before.

I had developed extremely sophisticated rotation for my DAs, L-Dopa, Benzos and opioids but just after some months it was obvious that DAs worsen everything. I reached a point were even opioids couldn't control the augmentation symptoms by DAs. So there was only one way: stop them immediately and never ever take them again.

Now one low dose pill of a DA is enough to create severe RLS symptoms.

Okay, I am an extreme case but sooner or later for many RLS patients augmentation will become a problem that big where rotating DAs or stopping them for a couple of weeks won't solve the problem because augmentation will come back so fast.

So in the end it is more or less all about finding a doctor who is willing to prescribe opioids and to find a 2nd drug to counter the alertness opioids can have as a side effect.

When Oxycodone works for you I would stick to it. No reason to think about methadone. Yes, it is the most powerful RLS drug available but it normally also comes with more side effects then opioids like Oxycodone, Hydromorphone or opiates like Morphine.

legsbestill
Posts: 348
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Improved symptoms - what now?

Postby legsbestill » Wed Dec 14, 2016 7:57 pm

QyX, thank you very much for your post. It is really nice to have someone speak up for Oxycodone - besides being the line of least resistence for me as my GP is prepared to prescribe it fairly readily, it does work well for me and with few side-effects. The big drawback is that it is very difficult to stop taking it - very unpleasant withdrawal symptoms but I have been able to reduce dosage without withdrawals - just not stop altogether. And you help here also; I found your observation about quality of life with rls and opioids v. without rls so helpful and although it should have been obvious to me, it had not been so.

I had previously read through your My Pharma Diary thread and I know how cruelly afflicted with rls you are and also how knowledgeable when it comes to rls and how wise and I greatly appreciate the benefit of your opinion. I agree with you that DAs are ultimately worse than useless for rls. However, even though I know this to be the case, I am not ready to give up neupro yet - opting instead to reduce dosage. Last week I resumed OxyContin, now at a reduced 5mg daily. This enabled me to reduce to 1 x 1mg neupro patch. I continue to take 50 mg pregabalin to counteract alerting and induce sleep.

I am surprised to find that even with the reduced neupro and OxyContin, I am getting almost complete relief from rls and relatively good sleep. Two or three months ago I was taking 2 neupro and maybe 4 or 5 x 5mg OxyContin and would still get some jumpy legs, arms and torso. I really hope it lasts and is not a temporary remission. It is about 10 years since I first received treatment for my rls and over that 10 years I ensured that the symptoms were always masked with pramipexole. However, in pre-treatment days I recall that there would be periods when rls symptoms were much less severe - I just can't remember how long they lasted - only that they always came to an end and more severe symptoms set in again. I am hoping however that now my improved symptoms are as a result of increased iron levels and will be sustained as long as I keep my iron levels high.

legsbestill
Posts: 348
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Improved symptoms - what now?

Postby legsbestill » Wed Dec 14, 2016 8:14 pm

I am still not sure what to do with my marijuana. I tried smoking a very small amount. It hurt my lungs and felt horrible but I had a wonderful sleep after it. Now I am wondering how to convert it to an edible form and am tussling with various issues including thc v. cbd v. cbn - which are best for sleep, decarboxylating - stove top v. in the oven - either way I have to purchase thermometres, dosage - how to make sure I don't overdo it.

Those of you who take mm, do you buy your brownies/candy ready made or do you construct them yourselves?

QyX
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Re: Improved symptoms - what now?

Postby QyX » Wed Dec 14, 2016 8:52 pm

Using a Vaporizer is a safe way to consume marijuana.

https://en.wikipedia.org/wiki/Vaporizer ... ion_device)

It will be interesting to follow your case. The combination of low dose Neupro and low dose Oxycodone might work for a while. For sure it is better then just using Oxycodone because the alertness will be higher and more complicated to fight. Also there will be other side effects and you most likely have to raise Lyrika, too. So another source of side effect.

I would probably do the same, getting the best out of Neupro but maybe in 10 years, when I do have make a decision for a patient, I would advise him not to squeeze out everything from the DAs. It might come in useful later of having the option to take / use DAs here and then and not just be totally depended on the opioids. I know, I excluded the anticonvulsants here but this is because they are not that reliable and you really can't predict if a specific anticonvulsant will work or not while DAs almost always will work, at least for some weeks.

It was really nice with Pramipexole because it was so easy to sleep with this drug. The longest period I got this drug to work was 8 weeks. So ya ...

And mrijuana: I wouldn't use it daily. Seems you respond very well to it but there is the danger of tolerance. Cannabis helped me a lot when I was younger, now it has no more positive effects on me. Nobody can tell how long it will work but it is a nice option to have. I envy you!

Rustsmith
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Re: Improved symptoms - what now?

Postby Rustsmith » Wed Dec 14, 2016 11:41 pm

legs, the answer to your question about mm in my case is that I buy candies pre-made. Each one is supposed to have a predetermined concentration of THC and/or CBD. I have only had one batch where I think that what I bought was a little bit stronger than "advertised", but most people aren't going to complain about getting more for their money, even though it caused a bit of a problem for me.
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.

stjohnh
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Re: Improved symptoms - what now?u

Postby stjohnh » Thu Dec 15, 2016 2:48 am

legsbestill wrote:... Holland, you seem to have mirrored my thinking in going from neupro back to mirapex. I am going to discuss this with my consultant. I just wondered, how long have you been back on Mirapex and what do you do to avoid augmentation?


Legs, been back on mirapex about 6 months. To avoid augmentation (I hope), I never take more than my regular 0.125mg dose, and take kratom to get by with the lowest possible mirapex dose, and never try for complete eradication of symptoms.

My current plan if I detect augmentation is to stop the mirapex for a week or two and get by as well as possible with kratom alone (at a much higher dose), possibly supplemented with an occassional oxycodone or hydrocodone, then restart mirapex after my dopamine receptors have become resensitized.
Blessings,
Holland

stjohnh
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Re: Improved symptoms - what now?

Postby stjohnh » Thu Dec 15, 2016 2:58 am

legsbestill wrote:
Those of you who take mm, do you buy your brownies/candy ready made or do you construct them yourselves?


Legs. I'm in California and buy commercial Brownies. They have chocolate chips in them, so I grind them in a food processor to get a homogeneous mixture, then put into 00 size gelatin capsules.

I spent several months trying different strains (and different administration routes- joints, vaping, etc) Indica, sativa, hi CBD, etc. In the end I found that the THC content seemed to be the best indicator of how much it helped my sleep.
Blessings,
Holland

legsbestill
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Location: Dublin Ireland

Re: Improved symptoms - what now?

Postby legsbestill » Fri Dec 16, 2016 12:35 am

Loads of very useful information. Many thanks Holland and Steve and QyX. I will have to experiment further with my non-legal marijuana. I have had some great sleep with it but it is hard to get dose right.

Really useful info re your use of pramipexole, Holland.

I am seeing my consultant tomorrow. Can't make up my mind about her. She seems reasonably knowledgeable but I feel she let me down when I was coming off mirapexin. She still doesn't know I am taking oxycontin. It'll be interesting to hear what she has to say to that and also about my concerns about eventual augmentation on neupro and whether to look at returning to mirapexin. I will be taking my Clinicians manual with me.

Rustsmith
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Re: Improved symptoms - what now?

Postby Rustsmith » Fri Dec 16, 2016 1:54 am

I hope everything goes well. Don't be surprised if she tells you that you cannot augment on Neupro. It was originally "sold" that way and a lot of experts thought that this might be true. Unfortunately, it wasn't. It took me 12 months to augment on pramipexole and 15 on Neupro. The slow time release concept is good, but doesn't prevent eventual augmentation.
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.


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