"drug holiday" from Mirapex

Use this forum to discuss any issues associated with Augmentation
mhp
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Joined: Mon May 07, 2018 6:24 pm

"drug holiday" from Mirapex

Postby mhp » Tue May 08, 2018 10:19 pm

I have experienced augmentation from Mirapex and Requip. I could not tolerate Gabapenim or the Neupro patch. I currently am on Day 5 of a "drug holiday" from Mirapex. Has anybody else gone through a drug holiday? I slept better last night, but do not feel well. Any thoughts or suggestions?

stjohnh
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Re: "drug holiday" from Mirapex

Postby stjohnh » Tue May 08, 2018 10:35 pm

Welcome MHP to the RLS Community forum. You will find lots of folks with a tremendous amount of experience in dealing with various aspects of RLS, including lots of sympathy, empathy and helpful hints.

The general approach for somebody in your situation, having augmented on two dopamine agonists, intolerant of neupro patches, and Gabapentin would probably be to move to opioids.

Another possibility after you have been completely off the mirapex for a while would be to restart it at a very low dose and add low doses of other medications such as gabapentin. I know you said you are intolerant of it, however lots of folks can take low doses of multiple medications without the same difficulties.

Be sure and find out the numerical value for your ferritin test, RLS is caused by a deficiency in transport of iron into the brain, and the blood ferritin test is the best we have to help determine if a patient with RLS is seriously iron-deficient. You need to have the number because the number needed for an RLS patient is much higher than for other folks.
Blessings,
Holland

Rustsmith
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Re: "drug holiday" from Mirapex

Postby Rustsmith » Wed May 09, 2018 2:12 am

mhp, if you are already to day 5, then the worst is over. The experience of most is that you will slowly start getting more sleep and start returning to whatever you RLS treatment free normal is. However, that could be several weeks more before you are fully there.

At this point, it is time to start thinking about what you are going to do now that you are free of dopamine augmentation. As Holland indicated, your choices include going onto a low dose opioid or a else the use of mixture of low dose medications. This might be a combination of a small amount of gabapentin along with something such as kratom or marijuana, if those are legal and available where you live. If you need more info about kratom or marijuana, type one of those words into the search box in the upper righthand corner and you will find loads of discussions on both topics.
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: "drug holiday" from Mirapex

Postby ViewsAskew » Wed May 09, 2018 4:35 am

When I stopped pramipexole the first two times, I made it to day 5 and stopped the holiday - I felt pretty bad. Most people start to feel better between day 4 and day 10.

How much were you taking? I may have missed that - if it was under 1 mg, you are likely quite safe to stop it as you did. If you were taking more, there is a small possibility that stopping quickly could cause other problems. Not very likely, but it could.

Have you had a serum ferritin test?
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.

mhp
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Re: "drug holiday" from Mirapex

Postby mhp » Wed May 09, 2018 3:12 pm

Many thanks to both of you for your responses! It helps to hear from others who have been through this. I have a Dr apt on Monday (Day 10) so I'll see where we go from here. Still feeling "bad" and nauseated. Has anyone else suffered from nausea during "withdrawal? What did you take for it? Last night I had severe leg spasms around 11 p.m. Surprised as I thought I would be getting better. Walking and zolpidem helped. Maybe this was my "return to pre-dopamine" levels"? I have resolved not to go through this again and will look at other options besides dopamine agonists. My ferritin level was low in the past (32). I need to have it retested. I was taking 0.125 pramipexole for about 5-6 yrs before stopping it. Had been up to .25 for just a couple of weeks, but that didn't help.

EeFall
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Re: "drug holiday" from Mirapex

Postby EeFall » Wed May 09, 2018 6:27 pm

I also took pramipexole for 6 years and it worked really well until augmentation. The mistake I made (and my doctor) was trying to keep using it on and off for several years after that. If I could rewind time I would have called it good after six years and would have never used it again. There are many alternatives out there that will work after Mirapex doesn't. Hope it works out for you.

ViewsAskew
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Re: "drug holiday" from Mirapex

Postby ViewsAskew » Wed May 09, 2018 8:06 pm

I did not have nausea. Most of my symptoms were related to the increased RLS symptoms - horribly increased - that lasted for much longer than I thought it possible!
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.

legsbestill
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Location: Dublin Ireland

Re: "drug holiday" from Mirapex

Postby legsbestill » Wed May 09, 2018 10:35 pm

I didn’t experience nausea - just violently increased rls symptoms so that it wasn’t possible to lie in bed at all. Try ginger for nausea - I take chrystalised ginger. It works well. It took a long time for my symptoms to settle down after I stopped mirapexin. Starting OxyContin and getting my iron levels up were what kickstarted my improvement - unfortunately I didn’t do this until about three months after discontinuing mirapexin. I discontinued OxyContin after a while but it really helped to settle my symptoms down when they were really bad.

Belsheart
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Re: "drug holiday" from Mirapex

Postby Belsheart » Thu May 10, 2018 2:35 am

Starting my weaning process from miripex one about a week, due to augmentation. Ferritin level is 38. Nurse practitioner put me on oral iron and i just couldn't tolerate it. Doctor said not to worry about it. But I've read ferritin should be at least 50. Any thoughts?

Polar Bear
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Re: "drug holiday" from Mirapex

Postby Polar Bear » Thu May 10, 2018 8:47 am

If doctor said not to worry about your ferritin being low then he doesn't know a lot about RLS. It is important to your well being to get it higher, up towards 100. At the last test mine was 147 and I am fortunate that this is a natural level and iron supplements are not needed.

I have read that the best way is to use an iron supplement with a high amount of elemental iron that is easily absorbable. This means that it does not stay in the digestive tract any longer than necessary causing irritation. Having a tablet that is coated or is slower release can also help to avoid discomfort but these don't seem to be as well absorbed.

What about spreading the dosage out during the day instead of taking it all at once. If you are taking the supplement with food, avoid consuming dairy products, coffee, tea, cereals, caffeine, antacids or calcium supplements as they can inhibit the absorption of iron. Taking it with a food or beverage that is high in vitamin C such as a glass of orange juice will improve absorption.

Iron supplements may contain different forms of iron including ferrous sulfate, ferrous gluconate, ferrous fumarate, and others. You may find that you tolerate one form better than another.

There is no one iron supplement that is best for everyone and it usually takes some trial and error to find a supplement that works for you.
I'm sorry I cannot speak from personal experience. I wouldn't just write off all iron supplements. Look for other gentler and more effective forms.
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

mhp
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Re: "drug holiday" from Mirapex

Postby mhp » Thu May 10, 2018 11:58 pm

Many thanks to everyone for your comments. My Dr did not think my symptoms were from Mirapex withdrawal, since I had been on a low dose. She recommended I go back on Mirapex. I have not had a ferritin level done recently, but 5yrs ago it was 32. How often should it be rechecked? Are there any problems when going back on Mirapex? I go back to the Dr next week and will discuss this and other issues about future options. Has anyone tried zolpidem for sleep? It seems to help me. I have tried gabapenim twice, but suffered from dizziness both times, even after three weeks.

Polar Bear
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Re: "drug holiday" from Mirapex

Postby Polar Bear » Fri May 11, 2018 1:34 pm

mhp - I have my ferritin checked yearly, sometimes more often. If I have reason to have bloods done I would often ask the Dr..... could we do a ferritin serum while we're at it. He is usually quite amenable. Your Dr really should be keeping tabs on your ferritin but it's the same for many of us, we have to push/remind our GP. We often learn more than them from our own research.

There are different thoughts about going back on Mirapex. You were you augmenting and no doubt are reluctant to try it again. Perhaps waiting for some weeks as your receptors reset, and then have another attempt with the Mirapex but keeping it as low as possible. You could keep the Mirapex really low and possibly supplement with another medication. If you do try the Mirapex again be very alert to the possibility of augmentation.
If you don't want totry the Mirapex again, has your Dr any other suggestions, does she have a Plan B.

Some years ago I tried zolpidem to help with sleep but didn't have much success. However, none of the sleep medications really help me much.
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

barbeegee
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Re: "drug holiday" from Mirapex

Postby barbeegee » Fri May 11, 2018 3:44 pm

Excuse the ignorance, I'm new here. What is augmentation?

Rustsmith
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Re: "drug holiday" from Mirapex

Postby Rustsmith » Fri May 11, 2018 4:43 pm

barbeegee, augmentation is something that is unique to RLS that is being treated with a dopamine agonist like pramipexole. Initially the pramipexole seems to work wonders with managing your symptoms. But as your body adjusts to it, you can reach a point where it requires increasing doses to manage the symptoms, the movement needs can spread from the legs to the arms, torso and elsewhere and the symptoms start earlier and earlier in the day. Eventually the symptoms can become a 24/7 problem that also does a good job of destroying your sleep so much that you are so sleep deprived that you are at risk of nodding off at any time of the day.

To see more, take a look at the discussions that appear in our forum that specifically addresses 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.

legsbestill
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Location: Dublin Ireland

Re: "drug holiday" from Mirapex

Postby legsbestill » Sat May 12, 2018 10:29 am

You haven’t said what dose of mirapexin you were actually on. In your shoes, I would be very slow to return to a dopamine agonist at this stage. Although the nausea may not be caused by the withdrawal, another symptom you describe - the legs going into spasm - almost certainly is. You have gone through the worst stage of withdrawing so you are in a good position to try other treatments. You could consider reintroducing a small dose down the line when your receptors have had a good long break, possibly along with some other treatments. I notice that rls seems to respond better and for longer when multiple treatments are used at the same time in small doses.


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