My husband started his first course of medication since diagnosis almost a month ago. He is on 2mg
Ropinirole once a day. After 4 weeks he will go onto 4mg a day. Ever since starting Ropinirole his tremor has now actually become a full blown shake. It is actually quite worrying to watch because it is so bad. Is 2mg too low to have any effect at the moment? Totally understand that not all medications will work for everyone but didn’t expect it to make the tremor worse. Anyone else had this happen?
I’m sorry, I know nothing useful but I can imagine it’s quite frightening. I doubt that it’s a sudden worsening of the PD though. Could you get in touch with the Parkinson’s nurses at the hospital? They should be able to explain.
Even GP could help, if you can speak to one.
Best wishes x
Thank you Silver Tabby. My husband has actually spoken to his consultants secretary. The consultant wants him to up his dose to 4mg after 4 weeks of being on 2mg. That will actually falls l on Christmas day. Then my husband has a follow up appointment in two week’s time and the consultant wants to see how he is after being on 4mg. I guess it is all trial and error at the moment and finding the most effective grug for each person.
Hi @Lizzyg what you’ve said to @Silver_Tabby was what I was about to recommend to you. All credit to you for getting on to the secretary. Medications can be hit and miss, not all suit everyone. I took one that had me hallucinating, it was not a good place to be. Personally i’m on Madopar which helps with my tremor plus I also have a Deep Brain Stimulator fitted. Another person to have in your Armoury is a Parkinson’s Nurse if there’s one in your area, your GP Surgery should be able to put you in contact with one. All the best, take care, stay safe.
Les
Thanks Les. My husband has been reffered to the Parkinsons nurses but it’s a three month wait until he gets the initial call from them, guess that’s like anything these days. Unfortunately I find you have to do your own research and chasing anything medical yourself. There’s no major rush at the moment just would have been good to get the tremor sorted but maybe the higher dose will sort that. If not I will be encouraging my husband to request to be weaned off the Ropinirole and try something else.
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Hi Lizzy, not considered an expert but I offer my thoughts to throwi in the pot.
I believe that most people usually take degrees of SInamet that contains Coradopa and levodopa
-the stuff that is depleted in the brain.
I believe that Roprinorol allows the dopamine to slow release and helps to make it effective.
Ask the medics how works -seems to me that levodopa is important- but there may be other reasons.
But what do I know!!
If you need a
Good laugh look for banjo-boy and hope it helps
Banjo-boy😀
Well my husband started his new dose of 4mg of Ropinirole yesterday. I’m not kidding you he was shaking that much within an hour of taking it I thought he was going to take off in the air. Not sure what thus, medication is doing to him but this is never right. He has an appointment with his consultant on the 7th Jan so hopefully will have some answers.
Hi @Lizzyg, Not teaching you to suck eggs but if there’s anything else you want to discuss with the Consultant make sure you have it written down. Be sure to come back on here when you’ve been and let us know how you got on, take care, stay safe & have a Happier New Year.
Les
Hi cruisecontroller,
Happy for any useful tips at all so thank you for getting back to me. We have a young daughter who has crohns disease (yep one disease wasn’t enough for our family to deal with so my husband decided to get one 
) I have learnt to write a list of questions before going to appointments with her consultant.
My husbands appointment can’t come quick enough the tremor is getting worse by the day with each tablet he takes. Seems madness because he wasn’t shaking this much before diagnosis.
Lizzyg - the other thing you can do is ring the Parkinson’s UK helpline, I believe they have parkinson’s nurses available to be able to advise you while you wait for the consultant’s appointment.
Thank you Kira. I believe the helpline is open again tomorrow. I will encourage my husband to give them a call. It is becoming clear he needs to come off Ropinirole, the shaking is just getting worse and worse as the days go on. I really am sure this, should not be happening.
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Lizzyg, stick to your guns and I know, how you’ve responded recently that you won’t be fobbed off by a consultant poo, pooing your husbands condition, be firm with them and tell them how it is. They won’t like it but if the truth hurts them then so be it, you have to be up front with them and tell them from the off.
Les
Yes will do especially as my husband as gone private so paying big money for these appointments. My husband is reluctant to giving the parkindond helpline a call he feels they will not be able to do anything for the worsening of the tremor so would rather he waited until the 8th Jan to see his consultant. I get where he is coming from so I don’t push it.
I think my problem I look out for the tremor and any other symptoms, I know I shouldn’t. It’s all new to both of us and very early days especially with medication. It’s all about getting the right medication that works for him, and at the moment it doesn’t look like Ropinirole is right for him.
Hi Lizzyg, Remember, there’s nothing wrong with you observing your husbands condition as you are in the best place to do so. My wife will pick up on changes in me before I realise so it is not a bad thing you’re doing. Given the time of year there perhaps aren’t as many people responding to posts as they’re busy getting on with their families being the xmas holiday.
You said about one disease not being enough for you handle what with your daughter having crohns and now hubby with Parky, could be worse I suppose for your daughter as I have a step granddaughter who has Prada Willy Syndrome which is the same as what Katie Prices son Harvey has !! My problem is I have two tremors, Dystonic and Parky. The Parky is controlled by a Deep Brain Stimulator plus I take 5 x 250mg Madopar. The Dystonic has been with me since I was a teenager but being what some Consultants are they wouldn’t have it that I had the two until they fitted my DBS, then they said,“oh, you appear to have another tremor.” My wife told them before I had my DBS fitted but they knew best but the main thing is i’m still here to tell the tale and relate to others. Keep on doing what you’re doing, you know it makes good sense and your husband will benefit in the long run. Take care, stay safe.
Les
Thanks for your reply cruisecontroller. You are quite right as there are so many more people out there who have it so much worse. My daughter has actually never been so well since her diagnosis 4 years ago. Just like many treatments medication for Crohns disease has come on a great deal these days and keeps her crohns disease maintained. I guess sometimes I just feel sorry for my family, my husband hates me feeling like that because he is so positve about everything. I do try to be careful in what I say to him with how I am feeling. That in itself can be really hard with wanting to talk about his diagnosis. When my daughter was diagnosed my husband was amazing in how he reassured me. I feel selfish to expect that this time when it is him who has the diagnosis. However I have learnt a lot of how to deal with any kind of diagnosis with anyone in our family. I have definitely learnt not to think the worse case scenerio all the time.
Just to add is DBS a procedure that can be done if you don’t respond to treatment? Obviously my husband has a long way to go with only just starting out on his treatment.
My husband is starting to doubt his diagnosis as he has not responded at all to treatment and symptoms actually now worse since being on Ropinirole.
Happy New Year Lizzyg, sorry for delay in getting back on here as I didn’t expect any responses, with regards DBS I tried several different medications before being put forward for it. As for you feeling sorry perhaps you should adopt some of your husbands positivity in reassurance like he did with you over your daughter. With Medical Science making new discoveries all the time like in to-days paper with Viagra helping to cure a Nurse in a Covid Coma also the same drug is being used to prevent onset of Alzeimers. So it does have other uses instead of for the obvious in both men and women(yes, there’s a pink version for the female gender !!). Your husband will eventually get put on a tablet that is right for him and everything, for a time, will be back to normal. Onwards and upwards, take care, stay safe.
Les