sudden increase in PD symptoms after Repinole

[CRMACK1948]

my husband has PD and has suffered with RLS for most of his life.Since his diagnosis in 2020 the episodes have got worse,till he was up 6 to 10 times a night,and sometimes fell asleep while standing and then fell over.Iron supplements,magnesium, vibrating leg wraps had no effect,and 8 days ago he was prescribed 25 micro grams of Ropinole.The have stopped the night time problems,but this Parkinson’s symptoms are much worse,unsteadiness,whispering,extreme fatigue and freezing.He is using a zimmer,whereas 2 weeks ago he walked round the house unaided.I can’t get an appointment for 2 weeks with the GP,and ear.iest phone call with a Parkinson’s nurse is Monday.Do we stop? Could he take or every other day? Any suggestions of an alternative available in the UK that doesn’t have a bleak set of possible side affects would be appreciated .

[evenshoshan]

I live in Paris (France) and was diagnosed with Parkinson's in early 2018, at the age of 65 (confirmed by Dat Scan), I'm now 70 years old. For Parkinson's I take Sinemet 12.5/125 3X a day. In 2020, I was also diagnosed with RLS by a professor of neurology at a Paris hospital. My first treatment for RLS was Gabapentine 300mg (a pain killer) which nearly knocked me out, so I stopped and suffered from feet pains and leg cramps (especially at night) for several years. About 6 months ago, my daughter who is a certified pharmacist in Paris, suggested that I take what several of her clients with RLS take, i.e. 1° Neupro patches 2mg (Rotigotine), 2° Neurontin (Gabapentine) 100mg, 3° Tramadol 50mg, each of them 3X a day. I didn't tolerate the Gabapentine, it made me drowsy, so I stopped it, but continued with Neupro and Tramadol. No more cramps and the feet pain is now bearable, i.e. I can live with it, and I haven't noticed any worsening of my Parkinson's symptoms. Hope this helps.

[CRMACK1948 in reply to evenshoshan]

Thanks so much

[MarionP]

It is a dopamine agonist... Prescribe for "leg motor restlessness." Which is related to Parkinson's and not true RLS so this medication is indeed the first line traditionally used for leg motor restlessness in Parkinson's. You definitely need to have a coaching conversation with your doctor on what it means and what should be done when the medication imposes new symptoms the side effects that are bad and unwanted. There may be other combinations to try or adjusting this course or what it's called titrating the amount and timing of the medication or maybe there are other forms of the medication to try.

You are in a discovery phase of what could be a complicated journey but it is only humane to try to manage those symptoms and so I would do what I can to get some kind of conversation with them immediately and not wait about, since they may interpret the intensity and persistence of your effort (or lack of it) as either indicative of the emergency situation or lack thereof. If you act like it is an true emergency, which I submit it is, they will be less likely to dismiss you. But if you are of a generation that is stiff upper lip, if you are too shy, dignified or restrained, they may interpret it as "they are fine they can wait" when really you cannot wait... Or they may use your reticence to be animated as an excuse they can use to put you off. So your behavior should signal just how badly troubled the situation is. Not good to be too naive and not good to be too "no sex please we're British" polite, your husband is in real pain and in real trouble and your comportment should reflect that.

People who don't respond well immediately, seeing symptom complications do not presage a good course, but it may be possible to titrate, you simply must know as much as you can about this medication and that means doing your own online research immediately. The more time you spend reading the better off you will be. What you do is read and anything you don't understand you're simply go back and reread very slowly researching every term you encounter that you do not understand and looking that one up too, and keep rereading until you understand.. and then move on to the next thing. Get a cuppa and read for three or six or nine hours.

The sooner you get off it the less likely residual side effects will persist, but it may be that you can titrate it down a little bit or space out the dosing, or identify some other feature of the medication that you can manipulate. But I don't see why you could not get a telephone consultation or at least a conversation from the person who prescribed it, since as a result of this person's prescription your husband is being tortured... Which deserves some great persistence in your effort to connect with that doctor.

Meanwhile I would use Google to learn as much as I possibly can about all the different medications crossing the symptoms you have observed with this particular medication and perhaps look for alternatives as well, you might as well since you have time to wait but I would make the time anyway and read read read read read! I once had something prescribed that imposed RLS symptoms on me, so slightly different than your husband who has had RLS all along, but when we presented up to the mayo emergency room after a 4-Hour drive, the doctor immediately ordered me off of the med and was very concerned that I had a toxic reaction called serotonin syndrome, and since you have not mentioned if your husband has ever had any stimulating type of antidepressants, there's no way to know if that's a related aspect of his RLS, but in my case involved serotonin syndrome and the medication created it, that required hospital immediate intervention, and I mean he was barking orders right now "stat," so I would not sit about waiting, I would make a lot of noise and present somewhere to an emergency room or wherever until I was seen, and I would not be above doing a bit of acting if I needed to also, since the cause is justified, do a good helpless act and damn salon distress act such that they cannot really rid themselves of you. I would learn about the word "iatrogenic" that you can use in conversation, as in "doctor, my husband is emergent, and when I talked with a friend, he used the word 'iatrogenic.' Does that mean anything?"

I am assuming your doctors are not casual, but you haven't really presented very much at all about his condition so really there's only a very limited amount you can get from asking us online here like this. It's very risky to not have a large dossier of information from which to glean what is going on without running the risk of serious complications from not knowing enough about your husband's condition history medication responses, current medications, etc. So there's really only so much that can be done here, most of it naked speculation. One of these search terms I might start with could be "RLS Parkinson's."

Hoping for all the best in your advocacy. And of course to hear back on how things have been going.

[CRMACK1948 in reply to MarionP]

Hi Marion,thank you so much for your didactic and empassioned reply to my cry for help.Your advice was great,but emphasised the giant gap between American healthcare and the insured in the driving seat,and the ailing British National health Service,where we have no power to direct our treatment,and are put to the bottom of the treatment list if we complain too loudly.The inadequate neurologist that my husband has is the only neurologist we can have access to,and is also used by the private health care facilities in the area,so” going private” would be of no benefit.Waiting times at accident and emergency departments are about 10 hours unless you have a heart attack or stroke,and there’s no queue jumping except if you are bleeding out.

I had to call for an ambulance 3 weeks ago,it was a 5 hour wait,and the xpaxxramedics refused to take my husband to hospital because they said it was a too dangerous environment for a frail Parkinson person,and he would not get his medications at the appropriate times,and was likely to catch a virus whilst in an unsafe place……I could go on but it’s to depressing.I totally agree with your advice to research research research,and Iv found this forum invaluable to find answers,and suggestions that I can apply to my husbands unique situation.One size fits all doesn’t apply to Parkinson’s does it?

[LAJ12345]

it sounds similar to the way the extended release madopar disabled my hubby to the point he was choking, couldn’t even pee without assistance and couldn’t even get himself onto the bed alone. They said it was progression.

I took him off it and went back to the instant release but with a half dose between doses and now he is doing so well people at his bridge tournament who hadn’t seen him for ages asked if he had been put on some new medication.

These extreme reactions are caused by the meds and are too much dopamine in my opinion. So if you can get him back off it he likely will improve. If the onset of symptoms started after the drug was introduced it seems pretty likely it is a reaction to the meds change,

Can you reduce the dose easily? Ask the neuro for help getting him off it.

[MarionP]

I neglected to mention one thing that an old family physician told me about motor restlessness in legs and RLS: quinine. Add to whatever else you are doing. A glass of tonic water during the day and a glass of tonic water before bed something like 6 oz before bed.

As to the ropinirole, adjusting the dose downward may help, one does not need very much. And gabapentin is an alternative.

[Sydney75]

Wish HWP would have never started Neupro patch. Very difficult to get off from everything I am reading. He is on 2mg started Horizant trying to slowly lower. Although his RLS is more like myclonic jerks and pain. Another awful symptom of PD.

Syd