Hi I’m just looking for advice please
I’m 40 yrs old and recently (1/3/19) been diagnosed with Parkinson’s. I was started on rasigiline the same date and told that I may also need to start other meds soon too.
I’m a bit nervous about starting loads of meds too early but recently the pain in my arm has gotten worse … its ached for about a year but has recently started with spasms / shooting pains similar to tooth ache which I’m not sure if is part of the condition ?
I can still do everything I need to do but just wondering at what point people started with extra meds ( I’m guessing they want to start me on levodopa) ?
I understand everyone’s different but if people wouldn’t mind sharing their experiences of at what point they started meds I’d appreciate the advice as currently feel it’s rather cloudy as to when and what meds people should start ?
Sorry to go on but I’m just nervous about starting them all too soon with only being forty years old and wishing I’d waited when the side effects kick in. Thank you
Hi @Madwife5676,
I’m sure you’ll hear from other members soon, but I thought it might be helpful if I chimed in as well. There are different types of pain associated with Parkinson’s, however, if you are having concerns about your medication, you should raise this with your Parkinson’s nurse. We also have a full section on our website that has a lot of information on the different types of medication used to manage Parkinson’s symptoms. You can find this here - https://www.parkinsons.org.uk/information-and-support/drug-treatments.
Of course, for more support on this you can always give our helpline a call on 0808 800 0303.
I hope you find this useful.
Best wishes,
Reah
Hi Madwife5676,
I have been reading your posting with interest and wondering how best to reply. Your comments very much remind me of my own feelings and anxieties when I was diagnosed in 2011. I was fearful of the tremors and believed they would quickly become constant and that I would obtain no relief from them. I was unable to sleep and had to resort to sleeping pills. I was equally anxious about taking medications for PD and resisted doing so for some time. After a few weeks following diagnosis my anxieties left me and I learned to live with the intermittent tremors which also became less as my fears went away. You are probably already aware that stress makes us shake more and has to be avoided. I refused medication for approx. 2 years until the tremors increased and I felt the need for some medical relief. I commenced with Co-Careldopa (Levodopa) which was slowly increased over the years and I still take it now. Frankly, I have never been aware that I benefited or gained any relief through taking Co-Careldopa but I have stayed with it for fear of stopping. About 12 months ago by which time my Tremors had become more serious, I had an appointment with my Neurologist to discuss Brain Surgery. My Neuro insisted that I would have to try other medications to control the tremors before he would consider Brain Surgery. Amongst others he suggested Ropinirole which I now take alongside Co-Careldopa. I am pleased to tell you that this achieved some success and, whilst I still shake, I am not doing so to the extent that I was. I should perhaps point out to you that I am approaching 85 and was diagnosed at the age of 77. Apart from Constipation, I have not suffered from any other symptoms other than Tremors. My purpose in telling you all of this is to try and assist you in coming to a decision about commencing medication. From my own point of view, I believe in retrospect that I commenced sooner than I need have done. There are some long term risks associated with PD Medications which are not so serious for me to consider in view of my age. However, you are very young and must give the matter much more serious consideration. You will be aware that none of the available medications cure PD. There are some who believe medications delay the progress but my own belief is that they only mask the symptoms. You may have a Neurologist who advises you to commence medication now but the reality is that you will have to make the final decision yourself. For what it’s worth and with the benefit of hindsight, I would now delay medication for as long as you are able to live with the symptoms you have. You are able to commence at any time and with that knowledge you will have the strength to go on for some considerable time. I do hope that my response will assist you rather than confuse you and I wish you much success in dealing with your diagnosis. Best Wishes, Gerrard
Thank you for your reply Gerrard it was really helpful, I haven’t really developed a shake yet ( occasional finger shake when doing my exercises) it’s mainly the pain that’s bothering me which yes gets worse when stressed. It seems to have got worse the last couple of days but hopefully just having a few off days.
Hello. I was Diagnosed with Parkinon’s 12 years ago at the age of 48 and like you I was started on rasagiline. This had little impact on my symptoms and so shortly afterwards I began taking Ropinerole and gradually worked up to the full dosage. I can’t remember to be honest when I started taking levodopa but I do recall my neurologist saying that he wasn’t worried about me taking it so early as he felt there was going to be something better in 15 years. I imagine it was about two years later that I began to take the levodopa and it did make a big difference. My main problem is with slowness And stiffness. I don’t have a tremor. The dose of levodopa has risen over the years but i can’t obviously say if I have done the right thing or not as I don’t know how long I’ve got left or How the medication will affect me in the future. For now I can say it is still working well. I still enjoy doing everything I used to do. I don’t let it get in the way orStop me doing anything. It just means me organising and timing things better as off medication time is now considerably more of a hinderance than it was before. There are certainly a lot of research projects going on and I’m hopeful that one day there will be something to help me further. My PD has been quite slow progressing which I think is often the case when it develops earlier in life
Thank you kaz I’m glad your doing ok
If you don’t mind me asking did the ropinerole help ? Did it give you many side effects ? What made you decide to take it ? I’m at a point where I’m still managing to do everything I want to with no shaking but I can tell my left arm has gotten worse which is why I’m contemplating more meds as want to work and delay things for as long as I can ! Sorry for so many questions x
Hi @Madwife567
I’m sure there are many people far more in the loop than me when it comes to medication.
However there is a cheap brace on the market that just might help your arm pain.
It should make it easier to perform daily tasks.
I’ve used it for pain much as you describe.
It’s worth a try and not much to lose and of course drug free
Tommy
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