New to Board, Longtime RLS Patient Seeks Advice

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Strelnikoff
Posts: 4
Joined: Wed May 20, 2020 8:59 pm

New to Board, Longtime RLS Patient Seeks Advice

Post by Strelnikoff »

70 years young, I've been treated for RLS for close to 20 years now. Some guidance I've seen has indicated the level of pain tends to plateau at about my age but I haven't seen any evidence of that, in fact the reverse seems to be the case.

In the early days I was treated with Mirapex, gabapentin, and so on. The most effective med for me was NeuPro but after I a ran through the samples and some starter programs, the reality of the standard price made it a non-starter for me.

About 5 years ago I was lucky enough to find a neurologist that was a sleep expert and lots of experience with RLS. This was fortunate as about this time the symptoms started to worsen rapidly. Doc switched me to Oxycodone a couple of years ago with a dosage of 5mg 2-3 times a day. This was effective but unfortunately since this time the symptoms have continued to get progressively worse. Doc says I have a "severe" case of RLS and has Ok'd an increase in the Oxycodone so that now I take around 30 mg or so a day.

As I understand it, Oxy is not supposed to have augmentation effects but regardless, symptoms have reached the point where the management of my med intake is become a major disruption. I'm never further than 4 hours from my next need for a pill and I of course have to balance the pain with staying within a 5-6 pill level over a 24 hour period (in order to prevent running short before the month is out). I can probably get doc to go higher but ...

I'm concerned about needing increased dosages of Oxy (because of the major side effect of constipation for me AND the hassle/restriction burden in the medical system fo needing that drug).

Doctor says he can switch me to Meth and also suggested trying to buy cheaper NeuPro from Canada might be an alternative.

So two areas of advice from the board requested:

(1) Is it practical/legal to buy NeuPro from a Canadian supplier? I've done a bit of research but haven't turned up any indication that its practical or indeed cheaper.

(2) What advice/experience does anyone have switching from Oxycodone to Methadone?

Apologies if this post is too lengthy. I'll need to get used to the protocols of the Board.

Thanks in advance for any assistance provided.

Rustsmith
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Re: New to Board, Longtime RLS Patient Seeks Advice

Post by Rustsmith »

Strelkoff, welcome to the board. Our standard comment is that we are glad you found us but sorry that you had to. And your initial post was fine. You will find a number of posts that are much longer. The important thing is to get post all the info and questions that you need. Don't worry about length.

Augmentation is not an issue with any of the opioids, but tolerance occurs for some of us. The difference between augmentation and tolerance is that with augmentation, the med is actually making your RLS worse whereas with tolerance, you simply need a higher dose to stay in control. Granted that that is a fine distinction but it is important because your Oxy isn't making your RLS worse it just isn't working as well.

I have not personally switched from Oxy to methadone, but I have switched from methadone to Tramadol ER and then back to methadone. It was a pretty seamless transition so long as the dose of the new med was similar to the old one.

I think that you will find methadone much more convenient than oxy since methadone is a once/day medication. The things to watch our for are that the side effects are different than those of oxy, so be on the lookout for signs of depression or apathy that can slowly come up over a period of months. The other thing is that many of us find that we have opioid-induced insomnia. You might not have encountered that with oxy since it is short acting, but with methadone's once-a-day dosing, it can be a "minor" problem that is easily resolved by taking it in the morning or at mid-day instead of at bedtime.

As for buying Neupro from Canada, that isn't something that I know anything about. I was fortunate that I didn't need to worry about cost during the 15 months before I augmented on Neupro.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.

Strelnikoff
Posts: 4
Joined: Wed May 20, 2020 8:59 pm

Re: New to Board, Longtime RLS Patient Seeks Advice

Post by Strelnikoff »

Thanks for this quick Reply.

An additional question....I assume meth is subject to the same controls as Oxy relative to being a controlled substance...same hasle/restrictions?

Thanks again

ViewsAskew
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Re: New to Board, Longtime RLS Patient Seeks Advice

Post by ViewsAskew »

Strelnikoff wrote:
Sun May 24, 2020 2:32 pm
Thanks for this quick Reply.

An additional question....I assume meth is subject to the same controls as Oxy relative to being a controlled substance...same hasle/restrictions?

Thanks again
Indeed.
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.

Strelnikoff
Posts: 4
Joined: Wed May 20, 2020 8:59 pm

Re: New to Board, Longtime RLS Patient Seeks Advice

Post by Strelnikoff »

On first week of methadone, so far so good. 10 mg alleviates symptoms for abt 18 hours as opposed to Oxy 4-5 hours.

Doc has OK'd increase to 20 mg after one week. To be continued.

Thanks for the advice and guidance.

Strelnikoff
Posts: 4
Joined: Wed May 20, 2020 8:59 pm

Re: New to Board, Longtime RLS Patient Seeks Advice

Post by Strelnikoff »

that "Managing Your RLS" thread is great. Arigato.

badnights
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Re: New to Board, Longtime RLS Patient Seeks Advice

Post by badnights »

Strelnikoff wrote:
Mon Jun 01, 2020 1:19 pm
that "Managing Your RLS" thread is great. Arigato.
Ann (viewsaskew) put most of that together. It is awesome, indeed! Ann is a wealth of knowledge.

Chronic WED/RLS cannot be managed with oxycodone - as you have discovered, it doesn't last long enough. I'm glad your doctor is trying you on methadone and it seems to be working. I am on hydromorph contin, the extended-release version of hydromorphone, which takes about 2 hours to kick in but lasts 6 or 8 hours, maybe more (it's supposed to last 12, but we all metabolize differently, and it certainly is not at peak effectiveness for 12 hours). I have 1 mg immediate-release tablets for breakthrough, which saves me hours of sleep when it turns out that my usual dose is not enough - I don't have to wait for a contin to kick in.

I am curious about what else was going on in your life when your symptoms began to worsen rapidly. It could have been "natural" progression of the disease, but there are a number of other things you should check into.
- Did you start an anti-histamine? or any other medication? A lot of anti-nausea meds, anti-depressants, and anti-psychotic meds can worsen WED/RLS.
- Or did you stop taking a supplement, like vitamin D or iron? Both of those (iron most clearly) have been related to WED/RLS severity. Some people find magnesium supplements relieve their symptoms, so if you stopped taking Mg that might explain something.
- Did you have an operation? WED/RLS often gets worse after surgery, especially orthopedic surgeries.
- Did you start donating blood? People who donate blood can have lowered iron stores, and RLS/WED is related to a deficiency of iron in the brain, which can be brought on or worsened by donating blood.
- Did you start drinking coffee? Or eating something you didn't used to eat? Different foods seem to be triggers for different people.
- Did you move to a new place? I suppose it's possible that molds or other airborne toxins could be WED/RLS triggers, but admittedly, I don't know of any evidence for that.

And finally - iron! Have you had an iron panel done, and did it include ferritin? You should get those numbers if you can. People with WED/RLS need to have fairly high ferritin (over 100, some of use even more), and most of us should be taking iron supplements or even better, getting iron infusions. Infusions for RLS/WED are still pretty cutting edge for most doctors, sadly, but there are papers and stuff we can give you to give your doctor. If your ferritin is under 40 or 50 you shouldn't have any problem getting an infusion. In any case, if your ferritin is low and your serum iron, TIBC, and saturation are normal, you might benefit from oral iron, but first confirm with your doctor that you're not at risk of iron overload.
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.

ViewsAskew
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Re: New to Board, Longtime RLS Patient Seeks Advice

Post by ViewsAskew »

Strelnikoff wrote:
Mon Jun 01, 2020 1:19 pm
that "Managing Your RLS" thread is great. Arigato.
Reminder that I should review that and make sure it is still accurate! Things change all the time and links break. Glad it was helpful.
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.

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