Retitled: Phase II, let it begin.

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Polar Bear
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Re: Retitled: Phase II, let it begin.

Post by Polar Bear »

Ann, this is wonderful...
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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ViewsAskew
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Re: Retitled: Phase II, let it begin.

Post by ViewsAskew »

Rustsmith wrote:Wonderful news. Any chance that since it appears that you have higher levels that you might be able to maintain it with oral iron?


I do not know. I haven't read as much of the research as I'd have liked. I don't know if they've tried that.

I remember a presentation by Dr Allen years ago - when this was relatively new to us. He said then that they were shocked to find that the first infusion was often "dumped" in a short time, but with each infusion, the level maintained itself longer. In many cases, he said, people required multiple (3 or so), if I remember correctly) infusions, each one lasting a bit longer, until it seemed to stay high for a long time. But, long time was two years at that point. They didn't have more data. I don't think they were trying oral iron.

Dr B has said that oral iron works well up to a point, but after 50-70, it seems to stop working - as if the body says "This is enough." It could be that oral iron has no effect at levels in the hundreds.

I've been up about 4 hours now - still haven't needed to take anything, even though I am tired today and do feel a bit "pre-WED". I can't really describe it, but many of us have it. I am winding my feet around each other, flexing my muscles, moving a lot - but I don't have any sensations. Maybe this is what it feels like for people who never have sensations. For me, it's usually the harbinger for what is to come. So, I may find that I reduced a bit too much last night - which as more like 40 to 45% reduction instead of the 30%. Also could be that I reduced the methadone so much that I'm having some slight withdrawals. Don't know.

I go back the methadone for two nights - and may stay on it for at least a week - to see what happens. it's harder to assess this when I'm changed meds along with dosages.
Ann - Take what you need, leave the rest

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ViewsAskew
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Re: Retitled: Phase II, let it begin.

Post by ViewsAskew »

Polar Bear wrote:Ann, this is wonderful...


It has been for three days! I hope it lasts for at least a few months. If it doesn't last more than a week, I'm not sure I'd go for the third infusion. But, maybe I just need it to be VERY high.
Ann - Take what you need, leave the rest

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cornelia

Re: Retitled: Phase II, let it begin.

Post by cornelia »

Very, very good news, may it last a long long time. A present for you right now.

I also think it is wise not to change meds right now in order to be able to trust your results. I think all neuros would agree.

Pls be careful with the meth dose. It is very tempting to lower it again and again and find your boundaries but not too fast I should think.

I am smiling because of this good news.
Corrie

ViewsAskew
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Re: Retitled: Phase II, let it begin.

Post by ViewsAskew »

I agree, Corrie.

I emailed with Dr B. He said to wait until the 4 week mark to take the test. That's in about 1 1/2 weeks. Then again in 3 months.
Ann - Take what you need, leave the rest

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EeFall
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Re: Retitled: Phase II, let it begin.

Post by EeFall »

Great news ViewsAskew! I hope the infusions continue to help you. :clap: :thumbup: :wave: I would have written sooner but my other health problems have been occupying my mind and it is difficult to see beyond my own problems recently. Sad but true.

As far as the Suboxone, about being dependent on it, remember that I stopped Methadone, Lyrica & Pramipexole and to a lessor degree Kratom and Ambien at the same time about a year and a half ago. I am only taking Suboxone now and I really doubt it would be as difficult to get off it than it was all the other meds combined.

Besides why would I ever quit it (why would anyone with severe RLS/WED)? It is the last thing that seems to work and it apparently continues to work indefinitely and unless a miracle is performed I do not see RLS ever going away and they have to know exactly what WED is and what causes it before they will be able to cure it.

So I wouldn't worry about stopping it (if you start) as it is unlikely that you will ever need to stop it, unless you find within the first few months that you don't like it, then it wouldn't be a problem to stop. Besides the initial 6 years I had taken Mirapex, Suboxone is the best med I have taken for WED. I never thought I would ever be sleeping 8 hours a day and now I have even gone up to 9 hours sleeping in on the weekend.

ViewsAskew
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Re: Retitled: Phase II, let it begin.

Post by ViewsAskew »

Thanks, EE. I think I have some concerns because I'm relatively young - I can see many reasons I'll need to stop meds over the years. They stop working, tolerance, I need surgery, etc. I don't want to have to detox every time something changes. I'd like to feel that I'm in more control. But, maybe that is wishful thinking!
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debbluebird
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Re: Retitled: Phase II, let it begin.

Post by debbluebird »

I know how tempting it is to reduce the meds when you are feeling better. I go back and forth with Methadone 5 mg, two tabs some nights, threes tabs other nights. There isn't a pattern. It just depends on how the legs are going. I'm happy for you that you are having a little break from the bad nights.

ViewsAskew
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Re: Retitled: Phase II, let it begin.

Post by ViewsAskew »

I haven't had a break in at least 6 months. I knew it was either tolerance or progression. It's been at least 4 years, I think, since a dose increase, but, I alternated for 2 of those years, so, really, it's possible it's tolerance.

Last night I tried 17.5. It kept me asleep for about 4 hours, but then I had to take the remaining 2.5 mg. So, looks like 20 mg is the new norm, instead of 27.5 to 30, to keep symptoms completely at bay. If I wasn't so tired, I'd keep trying the 17.5 just to see if I could keep tolerance from happening. I'm not sure that works, but it's been postulated that taking just under the amount to have no symptoms may prevent tolerance.
Ann - Take what you need, leave the rest

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EeFall
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Re: Retitled: Phase II, let it begin.

Post by EeFall »

Being young is a concern so is getting off Suboxone for surgery. I wouldn't recommend Suboxone unless a person had gone through all the other meds first, it is some pretty powerful stuff. As far as tolerance the doc keeps me at 4mg and I suppose he did that to keep me going on it. I am taking the very minimum to work for RLS, I can tell give or take an hour or so now if I miss a dose. Hopefully at the very least iron infusions will reduce the quantity of the meds you take.

badnights
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Re: Retitled: Phase II, let it begin.

Post by badnights »

When we see an improvement, we want to push it to the limits, but it's best to take it easy, drop the meds slowly, leave yourself a couple of days, at least, at the lowered dose before trying yet lower.

30% reduction is huge. (I had to eat differently for 7 months to get there!) And even if it only lasts a week, I would still go for more infusions if I were you. Because what you're seeing is an improvement. First time: nothing. Second time: a week. Third time: a month? Fourth time: a year? We don't know, but that is the kind of progression that's common, so I'd stick with it and see, if I were you.

This has to be the best thing that's happened to you in ages!
Beth - Wishing you a restful sleep tonight
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ViewsAskew
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Re: Retitled: Phase II, let it begin.

Post by ViewsAskew »

badnights wrote:When we see an improvement, we want to push it to the limits, but it's best to take it easy, drop the meds slowly, leave yourself a couple of days, at least, at the lowered dose before trying yet lower.

30% reduction is huge. (I had to eat differently for 7 months to get there!) And even if it only lasts a week, I would still go for more infusions if I were you. Because what you're seeing is an improvement. First time: nothing. Second time: a week. Third time: a month? Fourth time: a year? We don't know, but that is the kind of progression that's common, so I'd stick with it and see, if I were you.

This has to be the best thing that's happened to you in ages!


I did see an improvement the first time - I must not have been clear. It was only a short time and not as great as this. It lasted maybe 5-7 days. I think I took 20% less for several nights and then it was over. It was so fast, I almost wasn't sure. But, this time, there is no denying it! I haven't had a night without breakthrough in many, many months, if not a year. So, this is strong.

I guess I shouldn't have said it this way. I do not know what the level is. Say that it's 300 and then when it drops to 260 I lose the effects. Will a doctor keep my ferritin that high? I think the Johns Hopkins docs might, but not sure about anyone else. It's still relatively uncharted waters, I think, in the scheme of things.

You are right about the progression. I really am hopeful that this time is at least a few weeks or a month, though. :-)
Ann - Take what you need, leave the rest

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badnights
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Re: Retitled: Phase II, let it begin.

Post by badnights »

I am seriously super curious to find out what your ferritin is when you get it tested. What if it's only 120 or something? How crazy will that be? No doctor would mind giving infusions to keep you there! But what are the chances.

I just looked up the Earley recommendations that I summarized after his webinar. He monitors the ferritin level on a regular schedule, and when symptoms return, the ferritin level at the time of return becomes the target level for that person- the aim then being to keep that person's ferritin above the level at which symptoms returned. How that would be interpreted when your symptoms don't remit but simply improve, I don't know.
Beth - Wishing you a restful sleep tonight
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ViewsAskew
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Re: Retitled: Phase II, let it begin.

Post by ViewsAskew »

Dr B said he wanted a test at 4 weeks, then every 3 months. I had suggested I should have it now, to know what the level is that is working. Not sure why he didn't want to. He didn't say that he would test it when it stopped working, but I would assume he would!

I SO wish that my doctor had done the test correctly so I would know how high it was the first time. All I know is that after 8 weeks, the first time, it was 77 or so. But, fascinatingly, it was still in the high 70's after many months.

My hope is that the first one built a foundation.

I took 20 mg tonight, and have no symptoms and I'm pretty darn tired. I am going to sleep after I type this. Hopefully the same results tonight...but, I did have symptoms this morning when I woke up. But, I stayed in bed for 10 hours, lol. I took 17.5 mg and, as on the other two nights when I did this, I finally had to take an additional 2.5 mg. So, I didn't really sleep well until after about 4 hours in bed - at least that is my rationalization for staying in bed 10 hours!
Ann - Take what you need, leave the rest

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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.

cornelia

Re: Retitled: Phase II, let it begin.

Post by cornelia »

You write that you don't know if it is disease progression or tolerance that is happening. My neuro said the other day that tolerance usually does not happen after years; in that case it is probably progression. I didn't ask further but I am pondering about it.

It is interesting to read about yo ur adventures with iron infusions. I hope that you can keep your meds lower than before and if not I hope you are allowed a 3rd one.

I got my iron levels with pills from 11 to 290 or so and I didn't notice improved symptoms. I wonder if it might work with infusions. Should I ask my neuro?

Corrie

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