What's the strategy/plan?

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abart
Posts: 9
Joined: Sun Feb 16, 2020 1:04 am

What's the strategy/plan?

Post by abart »

Hi all.
I stopped Requip cold turkey exactly 14 days ago, replacing it with Dilaudid at bedtime.

What usually happens next? Dr Buchfuhrer said I may stay on Dilaudid indefinitely. That kind of scares me.
Has anyone every recovered from RLS where they don't have to take anything? What is the best case scenario?

I am so shaky and feel generally unwell from the Requip withdrawal. I was told by lovely people here that this is normal and it should go away.

Thanks in advance for any insight.

Audrey

Rustsmith
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Re: What's the strategy/plan?

Post by Rustsmith »

abart, the "withdrawal" time from Requip varies from 7 to 28 days. So it is entirely possible that you will start feeling better soon.

It is also possible that some of your current symptoms could be a result of the Dilaudid. The side effects vary between the various opioids, which is why there are so many different products available for doctors to choose from. If you don't start feeling better, you should probably call Dr B and ask to change to a different opioid.

As for your question about whether anyone recovered from RLS so that they don't have to take anything, I suspect that the only people who do that are the ones for whom RLS is a secondary condition and where treatment of their primary disease improves their RLS. The one thing that comes to mind is that kidney dialysis patients frequently have RLS during dialysis but the RLS goes away following a kidney transplant. Unfortunately for those of us with primary RLS, the answer is that it is very unlikely. The good news is that opioids are usually very effective and do not require ever increasing doses (like the DAs). People take opioids for many years with minimal problems. The trick is simply finding the right one.
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.

abart
Posts: 9
Joined: Sun Feb 16, 2020 1:04 am

Re: What's the strategy/plan?

Post by abart »

Thank you Steve. : )

Would an Iron Infusion be something to try?

QyX

Re: What's the strategy/plan?

Post by QyX »

abart wrote:Thank you Steve. : )

Would an Iron Infusion be something to try?
Yes, you should try to get one as soon as possible. In the meantime you can take iron pills who are available without prescription.

badnights
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Re: What's the strategy/plan?

Post by badnights »

You could also try reducing the hydromorphone dose. As your withdrawal symptoms ease up, you will need less opioid medication to deal with them. It is possible that the dose you are on is causing shakiness etc, but a lower dose wouldn't.

Iron can help dramatically. Do take it, if you're sure you're not in danger of iron overload.

As for whether anyone recovers, the outlook is not so bleak as we sometimes imply. I know of two studies done in 2011 (maybe there's more out now). Both studies found that the persistence of WED/RLS is low, that is, a lot of people who have it at the beginning of the study don't have it a few years later, at the end. An editorial remarked that such a phenomenon had not been reported before, and could not explain it, other than as fluctuations in the severity of the disease - that is, sometimes it gets better (or worse). This is contrary to the literature you can easily find, which all seems to state that once you have it, it'll get progressively worse. The studies are:
Sleep Medicine v12 p813 (editorial),
Sleep Medicine v12 p815 (followed 1300 people over 2+ years and 4800 people over 5+ years in Germany),
Sleep Medicine v12 p821 (followed 1592 people over 2 years in Japan).

There are also random case reports or small studies in which one or two people achieved remission e.g. by iron infusion; or by taking a herbal preparation called Yi Gan San; or achieved dramatic improvement by stopping gluten, fixing SIBO, etc. Also, larger studies showing people in remission or dramatically improved, not only after kidney transplants but also people who thought they had primary WED/RLS but actually it was secondary to venous insufficiency and once their varicose veins were operated on, the WED/RLS went away.

I've said this before: I think it's a mistake to think of this condition as a life sentence. There are plenty of cases of remission and of dramatic improvement. There is so much about how the body works that we don't know
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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