Withdrawal from .125mg Pramipexole after ST use?

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Madmom02
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Withdrawal from .125mg Pramipexole after ST use?

Postby Madmom02 » Tue Sep 13, 2016 2:16 pm

I stopped taking Pramipexole 9/10 because it wasn't working anymore. I'd been taking .125 mg since mid-August and it worked brilliantly - until 9/7 when the RLS came creeping (pun intended) back. I've augmented previously on carbidopa levodopa so I thought that I was augmenting on the Pramipexole. As I mentioned in an earlier post, my neurologist doesn't believe that augmentation happens with Pramipexole and wanted me to increase the dose. I thought he was wrong but now I'm wondering. Maybe the RLS was just getting worse on its own. It has progressed over the years.

Anyway, for the last two days and nights, the RLS has been about as bad as it gets.

I have oxycodone 5mg for back pain. I'm trying it just for the RLS - it works but not for very long and not completely. I get maybe 4 hours relief (& a much needed four hours of sleep). And it only reduces the feeling but it's enough that I can sleep for a bit.

Am I going through withdrawal from the Pramipexole even after such a short time and small dose?

Should I start taking it again?

Thank you,
MadMom

stjohnh
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Re: Withdrawal from .125mg Pramipexole after ST use?

Postby stjohnh » Tue Sep 13, 2016 4:43 pm

MadMom, you might be augmenting, but you are correct, low dose for a short time is less likely to be augmentation. I gather you stopped the Pramipexole. I thnk I would restart it at .125 mg and increase to .250mg if necessary. Pramipexole, for those who can take it, is still one of the best medicines for treating RLS, especially if you can keep the dose low. You will need less of the opioid if you can tolerate low dose Pramipexole. If you immediately get worse with restarting it, then you are probably augmentating.
Blessings,
Holland

Madmom02
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Re: Withdrawal from .125mg Pramipexole after ST use?

Postby Madmom02 » Tue Sep 13, 2016 4:48 pm

Thanks, Holland! I was kind of leaning that way since the oxycodone doesn't seem to be helping a all that much (& it's such scary stuff anyway).

ViewsAskew
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Re: Withdrawal from .125mg Pramipexole after ST use?

Postby ViewsAskew » Tue Sep 13, 2016 9:47 pm

Just my two cents - I augmented on pramipexole in about ten days on a very low dose. Once I'd augmented, every DA I tried caused augmentation within two days. Not saying it is, just saying it absolutely CAN be. After getting my ferritin a LOT higher (from 8 to over 200), I have gone as long as a month without augmentation - haven't tried to go longer, yet. And, even before I was able to get the ferritin higher, I used pramipexole regularly - I just never took it for more than 2-3 days at a time without a break.

And, as someone who's been through almost every opioid, the shorter-life ones only help me for about 3 hours, leading to very fractured sleep. And, not to say that opioids might not cause issues, but the research - though paltry - is on our side. Those of us with RLS tend to have fewer issues with addiction based on the research that exists so far. Dependence, however, is almost a sure thing.
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.

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Re: Withdrawal from .125mg Pramipexole after ST use?

Postby badnights » Wed Sep 14, 2016 8:55 am

What you have to remember, if you augmented on pramipexole and have stopped it completely, is that there is a phase of a few days to weeks (but usually 5-7 days) during which your symptoms get even worse than when you were augmented. This is the withdrawal phase, it can happen even if you weren't augmented. It can be hellish. This is probably what you are going through and it's not indicative of your baseline symptoms.

When you settle down to baseline, you may find that 5 mg of oxy is fine. (Though that does seem low).
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.

Madmom02
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Re: Withdrawal from .125mg Pramipexole after ST use?

Postby Madmom02 » Wed Sep 14, 2016 7:27 pm

Beth, would I have withdrawal after such a short time on the pramipexole? I'd say the symptoms were at about the same level as before I started the pramipexole - although maybe they were more present all day than before I started taking it.

The oxycodone is really too low to be doing anything - I said somewhere that I don't think it helps with my back pain except it maybe helps me not care about it so much. But, really, the dose is so low, I should probably just quit. I suspect, subconsciously, I've noticed it helping the RLS.

Ann, thank you for your comment about augmenting so soon. I'm pretty sure I was augmenting simply because the pramipexole worked so well and then didn't. My version of RLS varies quite a bit from week to week or month to month or whatever. Sometimes it's one leg or the other and sometimes it's both. It doesn't usually switch legs in one bout but it will go from just one leg to both. I mostly get the arm and trunk involvement during the day. Of course, it may be that my legs feel so bad, I don't notice the arms/trunk at night. It is never just one arm though.

I keep starting logs to keep track of what's going on but I don't enjoy paying such close attention to things. Sigh.

Last night I took .125mg of pramipexole out of desperation with .5mg clonazepam and slept for SIX hours! Yay! And no oxycodone.

Today at PT (for MS stuff), I had bad RLS in the waiting room and while we were talking so I fell back to the marching in place and jiggling my legs. And I'm having it in both legs and arms right now so the pramipexole isn't keeping it at bay all day like it did before.

Grrrr! This is so frustrating. I'm so glad I found you all. It helps so much to know there are others who can relate and who know stuff that a general neurologist doesn't.

Cheers to all!

Madmom02
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Re: Withdrawal from .125mg Pramipexole after ST use?

Postby Madmom02 » Wed Sep 14, 2016 11:40 pm

So, I'm being referred to a sleep medicine specialist and, in the meantime, my neurologist is recommending I increase the pramipexole to 0.375mg. ?????

ViewsAskew
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Re: Withdrawal from .125mg Pramipexole after ST use?

Postby ViewsAskew » Fri Sep 16, 2016 7:18 am

Anytime a person augments - doesn't matter if it took 2 day, 2 months, or 2 years - when the drug is withdrawn/stopped, there is always a period of increased symptoms. Always. It also doesn't seem to matter how long you were augmented.

This period lasts from 5-20+ days, with 5-15 being the most common.

Per the increase in pramipexole, some doctors (such as Dr. Buchfuhrer) believe that .25 mg is the MAX a person should take of pramipexole. Period.

If I were you, I'd write to Dr. B - somno@verizon.net. Explain that you augmented previously and started pramipexole and tell him what is happening. Include what other drugs you take. He almost always answers within 1-2 days when he is in town - and I had my appt with him today, so he is in town. You may not follow what he says, but it gives you a medical opinion that you can compare to what your doc says.
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: Withdrawal from .125mg Pramipexole after ST use?

Postby badnights » Fri Sep 16, 2016 8:27 am

The fact that you're experiencing daytime symptoms but weren't before is suggestive of augmentation. Also that the pramipexole used to work but doesn't now. And yes, you can experience withdrawal after a very short time if you have augmented (and can experience withdrawal even if you haven't augmented, though I don't know how long you would need to be on in that case).

The first four downloads in the post that opens when you click the link below my name (in the signature line under every one of my posts) - those first four downloads are all about augmentation, and it might be a good idea for you to read them, or at least skim through them, and bring them to your neuro who wants you to increase pramipexole. Explain that you were terrified of your symptoms getting even worse, which it seems would be bound to happen if you increased the dose, because of the phenomenon of augmentation, which is something unique to WED/RLS. Ask if he would mind reading the papers about it and giving you his opinion of them (pick one or two, or all four but highlight the important parts so his eye can pick them out easily). He really needs to get up to date; he might be aware only of levo-carbidopa causing augmentation. Even the RLS Foundation brochure on augmentation might be enough to clear that point up for him.

You might want to save the oxy and use 4 at a time when you desperately need some sleep. That's what I did when I was in a situation very similar to yours. It was such a waste to take just the one.
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.

Madmom02
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Re: Withdrawal from .125mg Pramipexole after ST use?

Postby Madmom02 » Fri Sep 16, 2016 11:27 am

Note to self: remember that RLS.org people are online in the middle of the night! I've been up all night. The pramipexole is definitely either not working or causing augmentation.

I swapped emails with Dr. B, who is amazing! He answered all my questions very clearly. And he sent me info to share with my neurologist. He thinks it's likely I'm augmenting and the oxycodone has maybe been masking it.

I wanted to be able to tell my neurologist I tried what he suggested so I took .25 pramipexole last night. I've learned my lesson.

I'm not taking any oxycodone during the day and will use it along with the depression inducing clonazepam to "drug" myself to sleep if the withdrawal is worse than the augmentation and NO MORE pramipexole. I'm also going to stand up to my neurologist and share Dr.B's info with him. I'm also thinking I might get my primary care doc involved. He prescribed the oxycodone and has been so good in trying to help me with my back pain. I think he'll work with me on this, too.

Thank you,Beth and Ann. You're like ports in the storm!

ViewsAskew
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Re: Withdrawal from .125mg Pramipexole after ST use?

Postby ViewsAskew » Sun Sep 18, 2016 8:11 am

Fingers crossed, my dear, fingers crossed. Let's hope that he "gets" the info Dr B shared (and he is truly amazing, isn't he?).

But, you are right - sometimes you DO need to try things the doc wants - just not all the time. We have to pick our battles wisely.
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.

badnights
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Re: Withdrawal from .125mg Pramipexole after ST use?

Postby badnights » Sun Sep 18, 2016 8:53 am

It's never fun to take meds you know are going to harm you just to convince your doctor that he's wrong :( Been there done that. Hopefully you can approach him the right way and he is agreeable to reading Dr B's info.
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.

debbluebird
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Re: Withdrawal from .125mg Pramipexole after ST use?

Postby debbluebird » Sun Sep 18, 2016 3:50 pm

Sorry that you are going through this with your medications. Oxycodone doesn't help me very much. I can take it once in awhile, but then it only gives me a little sleep. My preferred opioid is methadone. I'm taking 5 mg at 5 pm and the second 5 mg around midnight to 1 am. That holds me most of the time. Once in awhile my legs will wake me up. I just get up for a half hour, then I'm able to go back to sleep. I don't get any side affects from it either. There are doctors who don't like to prescribe it, but with the support of my sleep doctor, my primary will write for it.
Good luck

Madmom02
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Re: Withdrawal from .125mg Pramipexole after ST use?

Postby Madmom02 » Sun Sep 18, 2016 8:52 pm

Grrr! Took .125mg pramipexole on 9/16 & last night (I know I said I wasn't going to take it anymore but then I read about people taking it for 2-3 nights, alternating with other things and I thought I'd try. Sometimes, I'm so stupid but I'm terribly sleep deprived and clearly my judgement is impaired). So, I took it at 8:00 pm both nights. Friday, I didn't sleep at all and at 4:55 am the RLS went from bad to very bad.

Last night, I also took 10 mg oxycodone because my back pain was 7-8 all day and by 11:30 pm, I couldn't handle it and the biting bugs anymore. I fell asleep sometime after midnight. At 5:30 am the RLS woke me up and it was very bad. It's been present in my legs, arms, and trunk all day, even though I'm still taking 10mg oxycodone every six hours. The second I stop moving, it's there and if I'm not moving I still feel that little tugging that it usually starts with.

What am I going to do? I have no appointment with the Sleep people yet and my primary care doctor is on vacation.

I just needed to whine. I'm done.

Thank you all for being here!

ViewsAskew
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Re: Withdrawal from .125mg Pramipexole after ST use?

Postby ViewsAskew » Sun Sep 18, 2016 9:14 pm

Yeah, not much in the RLS-world is worse than augmentation and how nasty it can get. You very well might be able to alternate it eventually, but you will have to be off of it for at least a month or two before you do that.

Does your primary have a partner in his/her practice you can see?
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.


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