Hello! I am new to the community, and I am so grateful to have found fellow night walkers! I have had severe RLS for at least 10 years, and I have currently been taking ropinerol for some marginal relief.
Well, I have just discovered as a new mom that apparently ropinerol counteracts prolactin, so I am having a helluva time trying to breastfeed. Had anyone else had this issue, and if so, what was the solution? I have tried stopping the ropinerol but it feels like I am being absolutely tortured. I already am getting very little sleep as a new mother, and now I can barely sit still to even TRY to nurse my newborn, or even hold him for any length of time without the horrible creepy-crawlies I’m not only my legs (BAD) but my arms too. I cannot rest. I see a neurologist (FINALLY) in a few weeks, but Until then I am just dying. Help!
It seems your best solution is to stop taking ropinirole, but you hsve to be careful how you do this because as you've already experienced, you will get withdrawal effects. This is usually worsening of symptoms and sleeplessness. These lessen in time, but can be severe.
Therefore , in order to minimise withdrawals you will need to reduce the dose very slowly.
It may also help if you start taking an alternative RLS medicine. More on this later.
A possible way of stopping ropinirole is to reduce it in steps of 0.25 to 0.5mg. If 0.5mg, withdrawals may be worse, if 0.25mg it will take longer.
You can reduce the dose about every 3 - 4 weeks, or if withdrawal.effects settle earlier, then every two weeks.
You can cut up the tablets to get the right dose.
Some people find taking an opioid helps with withdrawal effects, but this is not a good idea, I believe, if you're breadtfeeding.
Iron deficiency is a causative factor in RLS and as you've been through pregnancy and are now providing for your baby, your stored iron levels may be depleted. This does NOT necessarily mean you have iron deficiency anaemia.
Taking an oral iron supplement may help counteract this. The most recommended is "gentle" iron, ferrous bisglycinate. NOT a prescription iron! Gentle iron is, as implied by the name, less upsetting to the digestive tract.
Oral iron, unfortunately, is not easily absorbed. It may be that only about 2% of what you take gets into your system. In order to increase absorption -
1. Take it 30 mins before or 2 hours after eating
2. Drink a glass of orange or take a vitamin C tablet at the same time
3. Do NOT take it every day, take it once every two days.
Withdrawing from ropinirole is not easy. This is something Drs don't seem to warn you about.
It is a great shame you weren't warned about ropinirole and breastfeeding before. I hope it works out OK.
Yes, I am actually pretty upset about not knowing that 1.) ropinerole has augmentation issues, 2.) it can give you crazy withdrawals and 3.) it will kill your ability to breastfeed.
Like, REALLY upset.
I've been reading your responses to other questions in the forum and I must say, I believe you missed your calling as an RLS specialist. Your links and your responses have prompted me to do a lot more research and to realize how poorly the neurologist I began seeing understands this problem. I currently searching for a new doctor, as this one simply suggests I keep increasing my dose of ropinerole (I was already taking 1.5 mg), and when/if that doesn't work, to switch to neupro patches. When I voiced my concern about augmentation, and the problems associated with dopamine agonists, her response was that I "had time" and "I was too young" for it to be an issue. In other words, I got blown off. Maddening.
However, it turns out I am in fact severely anaemic. My ferritin level came back at 7. I am currently in the midst of a series of 5 IV iron infusions. Fingers crossed. RLS is still horrible, but I at least have some hope that this will alleviate some of my symptoms.
I wanted to thank you profoundly for all of your help in the meantime. I never understood some of the nuances of this disease, and your insight has given me new motivation to advocate for my health.
Well done for following the various leads, and especially for carrying out your own research and making your own decisions. Sounds good for now. I hope the RLS and your quality of life improves soon.
Btw, how are you and your child (son?) doing together?
I’m doing much better now that I convinced the doctor to let me add some Tramadol (50 mg is all she will allow) and I went back to a low dose of ropinerole. (.5mg). The neurologist I was so excited to see was just awful about it, however... essentially accused me of drug-seeking behavior, and told me I needed just just stop even trying to breastfeed my son at all, and just start a Neupro patch. Her tune changed when she saw the blood test results, though. Decided in*was* actually suffering a lot, and after checking to make sure it was ok to take Tramadol while breastfeeding (it is,) said she would let me have it until January. She keeps pushing higher doses of dopamine agonists, and will offer no alternatives. It concerns me a lot, (plus her bedside manner is atrocious) so I am looking for a new doc.
I still have symptoms most nights, but not like the hellacious withdrawal RLS I was suffering from before. Most importantly: Baby is great! He’s smiling at me now, and we’re doing alright with the breastfeeding too. He gets most of his food via formula, but I have been encouraged by the pediatrician and my OB that even an oz or two of breast milk everyday is incredibly helpful for my son, especially when we’re in the midst of a pandemic. So, I just am just doing the best I can and taking this day by day.
Thanks for the update. Why do so many doctors start out on automatic mode and only when pushed start to look at us as individuals? I just wonder.
Your second paragraph made me smile, as that is what life is about, I think; meaningful relationships. I am glad you can enjoy again being your sons mom.
I'm really glad that you've found a possible major factor in your worsening RLS, i.e. the anaemia and are getting appropriate treatment.
I'm also very pleased that you have been doing your own research. It's really important, I believe, that people become "experts" in any chronic condition they suffer from.
I hope you do manage to change to a better doctor.
I'm not sure what can be done about people like the neurologist you mention. All doctors registered with the General Medical Council (GMC) are supposed to adhere to an ethical Code of Conduct and I note that the GMC have recently updated their guidance on decision making (about treatment) and informed consent (to treatment).
It doesn't appear to me that this neurologist is adhering to this ethical guidance. It seems to me that there are a significant number of doctors who's conduct is unethical and they very often get away with it, sometimes because we're not clear of our rights and we're not clear what to do about it.
In particular, in your case, your right to decide NOT to consent to taking a particular treatment, a dopamine agonist, is not being respected. Ethically, doctors are supposed to warn people of the risks of a particular treatment, not be dismissive of them. To accuse you of "drug seeking behaviour" is not just apparently personally abusive, it also seems coercive and hence again, is unethical.
I'd just like to say that you might consider reporting this to the GMC, this can be done online.
It's good to hear that your RLS, hopefully, is now getting sorted and that your baby is doing OK.
Interesting point. I have actually been considering what do to, as she has said a number of really insensitive things to me in the four or five times I have spoken with her either in person or via the telephone. One call actually left me in tears, as she told me SHE had decided that I should stop trying to breastfeed altogether because I "wasn't producing enough to do any good," and I "will dry up soon anyway." (So, the neurologist all of a sudden is a lactation specialist too, apparently.) Thankfully, my mother is a level 4 NICU nurse and talked me off the ledge there, explaining that ANY amount of milk is great, and to treat it more like medicine than food. Another time she went through my entire rx history looking for any painkillers, and demanded to know why I had rxs over the last two years. (A miscarriage where I hemorraged multiple times and ended up in the ER more than once, and then a D&C--both things she failed to add to the referral to the hematologist who was at a loss for why I had such low hemoglobin and iron.) But we are not talking vast amounts of drugs... less than 10 in all accounts. In this same investigation, she appears to have overlooked the multiple attempts I made to switch to gapabentin or Horizant, etc.
Luckily, I have a number of medical professionals in my immediate family who have helped me navigate this, but I am still left undertreated and without any alternatives. I think I might have found a new doctor, but I fear it will be a similar experience. I just don't know... but I will look into a report. If it's anonymous, I might try it. No one should be made to feel the way I was made to feel, and especially not when you are already in such a delicate state.
I'm not sure if you can report a doctor to the GMC anonumoisly. Nor can you make a complaint anonumously.
That's possibly why a lot of people don't complain or report because they think they will be treated badly ad a consrquence.
I believe there are safequards against that and it doesn't deter me.
I have recently submitted a complaint about two consultants at a local trust. I wrote straight to the Chief Executive as I've found the responses I get from PALS (Patient Advisory and Liaison Service) less than satisfactory.
If you do complain or report you do need something specific to report. It also helps if you have evidence.
I once made a complaint about a consultants verbally abusive remark to me and he simply denied it. With my current complaint I have documentary evidence of what I'm complaining about.
I do know that you can report doctors for conduct which could bring the profession into disrepute.
I once contacted the GMC some years ago when my daughters fiance (now husband) who I'd never met or ever spoken to rang me up and intriduced himslef as a doctor. He then proceeded to verbally abuse me for a considerable length of time. I did manage to record most of what he said. Eventually, my partner took the ohone off me and tried to get him to repeat his name, but he told her to F off and hung up.
I actually spoke to somebody at the GMC and they did say I could report this because.although it was a personal matter, he had introduced himself as a doctor.
In your case, unfortunately, since the misconduct is verbal ,they could simply deny it. However, you can request to see what they've written about you in their record.
To get off Ropineral, be sure to start an alternate rls medication at the same time. In fact, let the alternative medication build up a little first before tapering off the Ropineral. I did this with Gabapentin and had no problems with withdrawal. Hope this helps.