Life after quitting Mirapex?

[Smuu]

Has anyone successfully quit taking mirapex? Afterwards....are you able to stay off through higher amounts of iron or other means that are non medication?

I have had RLS since my pregnancy which was 30 years ago. I went to a neurologist who took iron ferritin test and I was in the 20s range about 20 years ago. She was thrilled when I got it in the 30s and said " is you RLS better? I said "no". So I assumed more iron wasn't going to help me.

Fast forward years later.... I asked her about a year ago that I had read where my iron should be at least 50. She said "yes". I said why didn't you tell me that I should be above a normal? No response. I proceeded to tell her that I would like an iron infusion because it upsets my stomach to take pills. Her response " Oh no....iron infusion is only given to those who are desperate. " I tried my best not to cry and slap her at the same time. I just left the office.

I am thankful for this forum. I learned recently from here about iron Bisglycinate. So grateful! I have been using it for a couple of weeks without stomach upset. 👍🙂 Going to increase my iron then get off Mirapex. Hoping it will help my RLS but I won't know till I quit the mirapex. Augmentation has been with me for years, but I have kept my dosage down.

[Annieapple]

Get off it by reducing slowly & using opioids for the withdrawal period. Pleased the iron bis is helping you. You may need to try a non DA drug if your RLS is relentless after a drug holiday. Best you get help from a different neurologist!!

[Smuu in reply to Annieapple]

Thank you Annieapple for your reply. Thank you for your advice and valuable information. And yes.....I will be looking for a new neurologist. We all struggle here so much with this RLS, and sharing with each other helps tremendously. You are a true asset in this forum.

[involuntarydancer]

I feel livid on your behalf reading this. The RLS study group - a group of some of the worlds leading medical experts in the treatment of rls - produced a paper last year in which they recommended that iron transfusion be considered as a first line treatment for all sufferers who struggle to raise their iron levels using oral iron (provided their serum ferritin is less than 100). So your GP is completely wrong. Iron is not only for those who are desperate but should be used in the majority of sufferers at a very early stage in treatment.

I will try to track down the reference to the study. You could print it out and bring it to your GP. Alternatively, as she clearly has no interest in keeping herself up to date with medical treatments of relatively common conditions - preferring instead to use belittlement and ridicule as a means of keeping her patients from questioning her - you could use wallpaper paste to decorate your GP’s car with it.

In addition to iron, there are alternative medications to dopamine agonists (such as mirapexin). Alpha2delta ligands such as pregabalin (Lyrica) and gabapentin work for lots of people. Others use opioids such as tramadol, codeine or OxyContin. It is more common for people to resort to some form of medication after withdrawing from a dopamine agonist than to seek to rely on non-medical options but if you did decide to go down that route there are loads of suggestions on here for management techniques.

[Smuu in reply to involuntarydancer]

Thank you for your reply. No one understands what we go through unless they experience it, but you would think neurologists would be medically updated, compassionate, and intensely wanting to help. Yes, I would love to plaster her car with information. Lol

Thank you for your ideas about withdrawal from mirapex and the options afterwards. I hope you find something that will give you long lasting relief from this terrible medical condition.

[Parminter]

I think you should have cried and slapped her! And said 'I AM deperate!'. And stamped and thrown things and broken the furniture. KIdding - sort of.

I think we all should speak out when we are disrespected in this way. We are brought up to be too damn polite. Not all doctors are worthy of automatic respect.

And 50 is way too low - the boffins have upped their advice on ferritin levels to 100. Even then they may give IV infusions.

I really do not know what the fuss is about IV infusions. Of course there is a danger, but one is watched closely by medical staff. MY GP did my infusions in his nurse's station.

Coming off pramipexole is not easy. Set yourself up with iron, then find a doctor who listens to you, and who would be willing to use an opioid if necessary.

ncbi.nlm.nih.gov/pmc/articl...

This is a good paper on tapering - you will see that no patients were expected to do it unaided, because the real experts know that it is really tough.

[Smuu in reply to Parminter]

Thank you Parminter for your reply. I am definitely going to look for a neurologist to help me with getting iron infusion along with the other advice I have read. Then I am going to take the plunge to quit. Honestly... I am so SO scared after reading the stories. I've tried a couple of times and could not get past the second day, but I've got to do this.

[Parminter in reply to Smuu]

Smuu, like you I was terrified. I had tried twice, like you, and just twelve hours each time was enough for me. It was hell on earth.

In the end, long story short, it was all solved by methadone.

Bingo! I quit overnight, and I have not looked back since then.

With the right help it does not have to be such a nightmare. I hope you may get the right help.

When you search for a new doctor, be brave and ask questions before you make an appointment.

[Zedz]

I got off it using gabapentin. I also have iron infusions to keep mine above 100. Recently diagnosed with low b12 too. I would see a different doc if you can. I struggled for years and finally got the right combo of neuro and hematology to actually do anything for me

[Smuu in reply to Zedz]

Zedz, Thank you for your reply. I have really been scared to go through the horrific quitting process. I have read your story and others and it breaks my heart what you and others have gone through. Just trying to get all the ducks in a row, before I take the plunge. Thank you for your advice and information.

[Zedz in reply to Smuu]

I was scared too because I knew it wasn’t going to be easy but fingers crossed you’ll come through it like I did. I know iron was my issue all eleven years and no one would help until I got the right people. So unfortunately I probably would have had this under control before I had to suffer through augmentation but have to look forward. Good luck to you!!