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Ropinirole - Need Advice on Side Effects

Posted: Sun Aug 11, 2019 9:37 pm
by meiatflask
After a couple years of dealing with moderate symptoms, I started ropinirole about 1-1/2 years ago. It took the better part if a year to figure out the dosage, going up and down several times, until I finally settled at 1 mg. I take the pill at 6:30, just after dinner, and I go to beg around 9:30. My legs are fine all evening, with rare exceptions, perhaps one day per month. I should also state that I never have RLS problems during the day, only in the evening.

The problem is that I get very sleepy, with dizziness, and lightheadedness when I stand up. I understand these are common side affects of ropinirole. These start perhaps 30 minutes (give or take) after taking the pill, and last for perhaps an hour or so. At that point, I seem to “push through” the side effects, and generally feel good for the last hour before I go to bed. The only times I am free of sleepiness/dizziness in th evening is if I actively distract my brain, which is a strategy I can use some of the time, but not always.

Reducing dosage only makes a minor reduction in the side effects, but probably 50% of the time does not relieve the RLS symptoms. Increasing dosage makes side effects worse. If I take the pill later in the evening, say 7:30, the RLS symptoms generally begin and I struggle with them until the medicine kicks in, with all the side effects. I have tried splitting the dosage, half at 6:30, half at 7:30 or so. This does not appear to make a significant difference.

Help! Is there any way to avoid the side effects? Or should I consider switching from ropinirole to a different medication? If so, which one should I consider?

Re: Ropinirole - Need Advice on Side Effects

Posted: Mon Aug 12, 2019 12:27 am
by Rustsmith
If ropinirole is treating your RLS acceptably but the side effects have not gone away after all this time, you might want to ask your doctor if you can switch to pramipexole (Mirapex). Pramipexole is similar to ropinirole, but the side effects can be different and so may not cause the problem that you are experiencing.

On a different note, has your doctor done blood tests on you to check your iron levels, specifically ferritin? This is something that is important for anyone with RLS and doubly so for anyone taking a dopamine agonist like ropinirole or pramipexole. You should also ask for the ferritin number and not simply accept that you are "normal". Normal for everyone else is anything over 20, for those of us with RLS, it should be over 75 and better yet over 100.

Re: Ropinirole - Need Advice on Side Effects

Posted: Mon Aug 12, 2019 1:05 am
by meiatflask
Thanks rustsmith.

I had my ferritin checked on June (for the first time) and it was 60. The doctor told me to take the standard over the counter iron supplement 65mg iron (325 sulfate), which I now am. I have not had the iron re+checked. Should I? I have not noticed a difference since adding the iron.

I will read about mirapex. I am heading on vacation next week, so I won’t make any change until I return in early September, so that I can do a good job of monitoring everything during normal life.

Re: Ropinirole - Need Advice on Side Effects

Posted: Mon Aug 12, 2019 1:48 am
by Rustsmith
It takes weeks or months to see a change when taking oral iron, especially if you are starting at 60. The doctors at Johns Hopkins have said that it is very difficult for most to increase their ferritin much over 75 using oral iron. I hope that your doctor also told you to take a vitamin C tablet at the same time as the iron sulfate and to take them on an empty stomach. Also, if you take a thyroid med, you should not take that at the same time since thyroxine and iron sulfate tend to cancel out the benefits of each other.

Therefore, you shouldn't expect your doctor to want another blood test until sometime in the late fall or even early winter.

Re: Ropinirole - Need Advice on Side Effects

Posted: Mon Aug 12, 2019 2:49 am
by meiatflask
Again, thanks. I take the iron with my other vitamins with a glass of Grapefruit or OJ in the morning, which should, along with the c in my multivitamin, be enough C, I think. But maybe not. I also have breakfast immediately after taking the iron. So does that qualify as an empty stomach?

I am new to this iron thing (and RLS, too), adding the Ferritin test only after reading about it in some of the organization literature. If I get my iron above 100, is it possible that will it completely relieve the RLS symptoms? Or does it just help a little bit?

Also, besides vitamins (multi, e, folic, baby aspirin, magnesium, niacin) I take no other medications, so I don’t have to worry about interactions.

Re: Ropinirole - Need Advice on Side Effects

Posted: Mon Aug 12, 2019 1:45 pm
by Rustsmith
Taking your iron and vitamin C immediately before breakfast does not qualify as on an empty stomach. Iron should be taken at least 2 hrs after a meal or 1 hr before. The problem is that there are a limited number of receptor cells in the intestines for adsorbing iron, calcium, magnesium and/or zinc and these cells do not work very efficiently. So any food that is pushing the iron past means that the iron will just pass through without getting adsorbed. Also, of the metallic minerals that I listed, iron is sort of last on the list. So, your magnesium vitamin would win out in the contest for adsorption and the iron would lose.

As for what happens if you can get your ferritin over 100, for many of us the RLS symptoms will be significantly improved. For some, their RLS is totally relieved and others see a significant reduction. Unfortunately for some of us (including me), getting ferritin over 100 doesn't help. So in this respect, we are all very different in how we react to increased ferritin.

Re: Ropinirole - Need Advice on Side Effects

Posted: Mon Aug 12, 2019 3:55 pm
by Polar Bear
I have been taking oral iron for about 6 months starting when my Ferritin dropped from 160 down to 57. After 6 months oral iron my Ferritin is up to 64.

Re: Ropinirole - Need Advice on Side Effects

Posted: Mon Aug 12, 2019 4:45 pm
by Pleasuredeal
I found a lot of information about Mirapex or Pramipexole and it’s potential bad side effects .

I have started taking Mirapex in 1999 after trying Sinamet which caused a huge augmentation problem for me . I found out on thé RLS WEBSITE about this augmentation problem for 25% of the users . It said Mirapex did not have the same issue or if it did it would be over a much longer period of time.

With Sinamet the augmentation was almost immediate. I went from one pill every night to one pill every six hours in less than six months . Two neurologist I consulted did not know about augmentation.

Thé main problem with the pramipexole side effects is it may take many years to show or you may not be aware you have it like all the obsessions : gambling , sex , impulsive buying , over eating , snacking , ignoring risks or enjoying taking unusual chances
As you augment your RLS you need more drug and become totally dependent. I even convinced myself that if i ran out of pramipexole i would commit suicide . I did ran out once and became like a junkie until i could get it back .

Until the mid 2000’s there were no significant warnings on the RX Sheet when you bought Mirapex . It said possible obsessions like gambling. Go look at the RX sheet now it has a long list of possible bad side effects .

To avoid lawsuits the original Manufacturer of Mirapex raised their price and the generic pramipexole is a lot cheaper . So most people did what I did bought the much cheaper generic. A lawyer told me only a lawsuit against the original manufacturer would have a chance . The generic manufacturers are too many and don’t have the money .

I read that 1.5% of pramipexole users may have SEVERE side effects from pramipexole . The FDA and the drug manufacturers may have concluded that 1.5% is an acceptable collateral damage if 98.5% can (or believe they can) use the drug with no bad side effects . I suspect this % is much much much higher than 1.5%

One Mirapex user in Minnesota got a favorable judgement in a lawsuit and was awarded several milllion dollars . Of course the drug manufacturers will drag this into appeals after appeals and he may never see any money .

I found out the hard way about the side effects and suffered for many years these health and behaviour issues were caused by the drug . Five neurologists I consulted did not know about it . I would enter in a search a heath or behaviour problem I had next to mirapex and found all kinds of other people suffering the same . My own family don’t believe me when I tell them about some of these side effects . It’s also not easy to talk about obsessions like sex , addiction to ***** sites ... impulsive buying or hallucinations you had with your family . I understand rape victims who don’t want to take it to court .

I finally got off pramipexole in May 2018 after my last neurologist died . He was not aware of pramipexole potential bad side effects . I am now using Gabaprntine with limited success but all the bad pramipexole side effects are gone. My RLS is back to where it is bothering me sometimes at night , like before I started on Mirapex in 1999. Thé augmentation is GONE . I may be able to live with my current RLS and no drugs. By the way I had a three year episode ( 20012 to 2016) when I had access to opioids and all my side effects disappeared and then came back when I had to go back to pramipexole because I could no longer get opioids.

Here is some advice for the moderators , if you are looking for research money to find a cure for RLS why not a class action suit and possibly get millions of $$$ instead of the few thousands of dollars the RLS FOUNDATION have for research funds .

Just compare the current RX warnings about potential side effects for taking pramipexole and what it was say in 2005 . And the current RX Warnigs list is only partial. Look at what the Mayo clinic researchers have found . The drug manufacturers knew about these bad side effects a long time ago but did not want to scare away users who could instead use a much more effective generic and cheap opioid . Their lobbyists are busy convincing our elected officials to pass laws to limit opioids and force their expensive and less effective and in the case of pramipexole BAD drugs.

Re: Ropinirole - Need Advice on Side Effects

Posted: Mon Aug 12, 2019 9:31 pm
by Rustsmith
Pleasuredeal, there is a misconception by just about everyone not involved with scientific research about how studies get funded. I worked in engineering corporate research for most of my career (before I retired) and funded a large number of scientific studies. Most funding of the basic type of research that is needed for RLS does not come from organizations like the Foundation, it comes from your tax dollars. HOWEVER, the government understands that the federal employees who are in charge of the purse strings in groups such as the National Institute of Health cannot be experts in every topic that deserves funds. Therefore, a requirement to get federal funding is that there has to be "matching" funds from other organizations. Matching in this case doesn't mean 1:1, it simply means that the experts involved with organizations like the Foundation need to agree enough that a study is important to kick in their own dollars. In research, this is called leveraging. The Foundation's "few thousands of dollars" are leveraged into many millions. Unfortunately, if the Foundation had "millions of $$$", it probably wouldn't mean that many more studies because there are only so many scientists and federal dollars to go around. Competition between diseases and other medical conditions means that only so much can get done in any one year unless there is a MAJOR emphasis on one topic, like the supposed "war on cancer".

In my opinion, the biggest hurdle to getting effective treatment that is faced by the RLS community is the almost total ignorance of a huge number of doctors, which involves both GPs as well as neurologists. The vast majority were never taught anything about RLS in med school (even if the graduated after circa 1992 when RLS became semi-recognized) nor did they learn anything about it during residency or as part of their continuing education. Continuing education information is available, but RLS isn't as "sexy" as classes on topics that are potentially fatal, such as the latest in treating diabetes, cancer, heart problems, etc.

It is therefore incumbent upon the RLS community to educate ourselves (since many of our doctors cannot be expected to) and then to do what we can to educate our own physicians. Since RLS hits between 8 and 15% of the population, it wouldn't take too many years of this sort of cart leading the horse action to make a significant dent in the problem. Yes, people will suffer in the meantime, but science will continue to make strides into understanding how RLS occurs and as doctors accept guidance, the size of the problem will slowly diminish.