Mirapex

[RLSdaily]

Okay, I love you folks already.

SO.. per doctor I have been taking Mirapex as needed at 2-3 hours before bed. ( I didn't used to need every night) Since started taking... I now need every night and wake up with RLS and have it severe during the day. So his answer is take more meds. My point is only by reading posts from all of you have I learned so much, Everything else points at the Mirapex for adding to my issues. Rapid weight gain( 10lbs over 3mos) IRRITABLE, depressed, lack of umph… tired ( more than normal)

When the Mirapex wears off, my system needs more (and stops making its own dopamine) hense the increase in RLS. Thank you all for so much info to open my eyes and hope to convince my doctor.

[Madlegs1]

I'm gathering from your post, that you understand about augmentation, and not to take any more Dopamine agonists.

Your next line is Gabapentin or Pregabalin, or opiates if your doctor is amenable.

As usual, check you are not taking antidepressants or antihistamines.

Or in taking foods/ drink that may be setting you off. We've written about these constantly.

Good luck.

[RLSdaily in reply to Madlegs1]

Correct no other meds and I watch what sets me off and what I can get away with as far as foods and lifestyle.

I will not do Gabapentin or Pregabalin, Codeine works well but in the US that makes me an addict... LOL I am finally be referred on to a Neuro doc so we shall see.

The best part is knowing it isn't in your head about the meds making it worse.

[LotteM in reply to RLSdaily]

Maybe the paper in this link will prove helpful:

mayoclinicproceedings.org/a...

[Dcb55 in reply to LotteM]

Wow. Just the research paper I was referring to!!

[Dcb55 in reply to RLSdaily]

There are doctors in the US who will prescribe opiates for RLS. There isn’t much awareness about it but there is a research paper that many doctors signed on to (you can find it through the RLS Foundation website) on the mechanism through which opiates work on RLS and why the addiction risk is minimal. They are trying to get FDA approval. Find one of those doctors (they are at places like Mayo, Johns Hopkins, Vanderbilt.). I travel four hours to Nashville every three months, sign a pain contract, and follow a bunch of irritating but reasonable rules and I get the opiates that work for me.

It’s not the first line of defense but I’ve been through Requip, Gabapentin, lyrica, tricyclic antidepressants, and benzodiazepines. The hydrocodone works like a charm — just keeps me up all night. 😏

[Dcb55]

The other thing is not to stop the Mirapex abruptly. Taper off as quickly as you can. Augmentation is common and more painful (for me) than the legs were at the time. I only managed 6 months on Requip before I augmented. It was ugly. 🙃

[involuntarydancer]

Have you had your serum ferritin checked? Experts recommend iron levels of over 100 for rls. Raising iron can be helpful with symptoms. I have found small doses of multiple drugs works better than relying on a single drug - though waad (we are all different).

[RLSdaily in reply to involuntarydancer]

I am taking iron yes and thank you.

[Parminter]

RLSdaily, if you like your doctor, and he listens, then gather information on augmentation and dopamine agonists and take a folder of evidence-based papers on your next visit. A good doctor will not mind this.

If he does mind and is more concerned with his ego than with your health, then change doctors.

RLS is barely on the radar in the training of GPs, training comes from the drug companies, and even neurologists may know little, and not be up-to-date.

New science is coming in regularly. They should know about it.

So inform yourself as much as you possibly can, and do not let medical practitioners practice medicine AT you, only WITH you.

The advice to take 'as needed' says that he is out of date. It is also dangerous for you, but not for him.

He has listened to the information from the drug rep, which is not enough by a long, long way,

It is up to you to fill in all the rest. Take control.

[RLSdaily in reply to Parminter]

Thank you

[Hidden]

Hello!

I’ve had the same issue with Doctors and Mirapex. When I visited this forum, I started realizing what a huge dose of Mirapex I’m actually taking! 1mg in the am and 1mg pm!! I have weaned myself off of the 1mg in the am and still taking 1mg at bedtime. So I’m half the way there. Whew! I know that the worst days lie ahead of me. I have an MD appt in August. I was thinking about staying on the high bedtime dose until then and make a new plan with the doctor for weaning off completely. Does this sound plausible my RLS gurus??

[involuntarydancer in reply to Hidden]

Hi GF, Yes - it is reasonable to stay on the pramipexole until you discuss with your doctors. It also gives your body a chance to recover from the reduction in mirapex you have already introduced. Track down the paper on opioid use for rls (there are numerous links to it - check LotteM's recent posts) and try to persuade them to give you a temporary prescription for an opioid to get you through the worst of the withdrawals. Good luck!

[Hidden in reply to involuntarydancer]

Thank you so very much! I was hoping you would reply 🙂 My GP doesn’t prescribe narcotics, but he might just do it for the one-time, short-term. Is Lyrica considered a narcotic? And thanks for the well wishes!

[involuntarydancer in reply to Hidden]

No; lyrica is not a narcotic. It is pregabalin - an alpha2delta ligand (anti-convulsant). It is quite effective for treating rls for many sufferers but won't help AT ALL with the exacerbated symptoms you will experience coming off pramipexole. You will have to be prepared for it to be hellish if you can't get a narcotic. The only other option is to get kratom which may not be legal where you live but is effective in reducing the trauma of dopamine agonist withdrawal. It's not for everyone as it is not quality controlled but if I was going through that process again I would not hesitate to try kratom. My rls has made me incredibly lawless and somewhat reckless!

Incidentally, it is probably worth starting to titrate up with lyrica (if that is what you and your consultant decide should be your new treatment) as you reduce your dopamine agonist because even though it doesn't help with withdrawals it can take a while to kick in and if you are taking it as you withdraw it will be ready to start covering your symptoms as the withdrawals reduce - if that makes sense?

It is important to titrate down slowly off mirapexin regardless of what your medical professionals say (some are so careless about this). Also getting your serum ferritin up can help slightly with the withdrawals and generally with symptoms thereafter. I a have probably mentioned this before so forgive the repetition.

[Hidden in reply to involuntarydancer]

You can’t possibly give me too much information, no worries there! I think that’s a very good idea to begin Lyrica now. I will probably have to attempt to explain all of this to my GP. None of my docs are up to speed on RLS management! Thanks for your help!

[involuntarydancer in reply to Hidden]

Very few docs know much about rls. The best we can hope for is that they will listen to us and do no additional harm!

[horseart in reply to involuntarydancer]

I am hearing terrible things about Mirapex, it is scaring me. Do you all know of a better med for RLS?