Hi, I’m Peter.
I’ve joined on behalf of my partner; She started with a tremor about 6 years ago but is phobic about doctors and hospitals.
She finally consulted our doctor and has been referred to a consultant whom we have seen privately on several occasions since April.
Her consultant agreed that she has PD and prescribes Sinemet, initially taking 1 tablet 3 times per day. This was to be increased to 2,1,1 the second week, 2,2,1 then next week etc.
She had side effects a plenty, feeling steadily worse; tremors in previously unaffected limbs She reported this to the consultant after 3 weeks and he said concluded that she was allergic and told her to stop taking them immediately.
After a few weeks to allow them to leave her system he prescribed Ropinirole. An hour after the first tablet she started to feel extremely unwell and after 2 hours was violently sick.
She has now been prescribed Rasagiline. The consultant implied that this was less effective than the previous two drugs, but was a last resort.
She is tolerating this and has been taking it for 5 weeks, but hasn’t seen much improvement. Her left arm is where the tremors are most noticeable. a few weeks ago she was barely able to lift a notebook - there is, maybe, some slight improvement there, and she report her sense of smell is enhanced.
She has periods where she feels almost good, but that contrasts with others when she has a total lack of energy and her legs feel like lead. She forces herself to exercise, by walking to music in front of YouTube. Yesterday she felt awful but forced herself to do 17 mins, despite the heat.
She is 75 , is very supple and not overweight. She had a back injury as a child which left her coccyx to curve outwards which makes sitting comfortably a challenge, at times, so that she often has back ache but is not sure if that is a possible PD symptom.
Any reassurance or advice greatfully received.
Thanks
Peter
Hi and welcome to the forum, Peter. It’s very heartwarming to see how supportive you are to your partner. That was a very brave move on her part agreeing to see the doctor and get a diagnosis. I’m sure that it took a lot of understanding and encouragement on your part. Well done to both of you.
This a friendly place and I hope others will start chatting to you soon. They may have something to say about your partner’s reaction to her medication. I’m sorry to hear that the new medication isn’t proving very effective. Have you talked to the doctor about this? Maybe the dosage needs to be reviewed and adjusted. Any small improvement is welcome and I hope she can keep up the exercise at her own pace and with your continued support.
It’s hard to say if Parkinson’s is causing backache. If you search on this forum, though, you’ll quite a few chats about it. Exercise will help and perhaps she’ll agree to see a physiotherapist to get some exercises. Of course, always report any new symptoms to your doctor.
Finally, caring for others can be physically and emotionally tiring and it’s important to take good care of yourself. I’d encourage you to read this page for some helpful hints about caring for someone with Parkinson’s. If you need any support or advice, our helpline advisors are here to listen. You can contact them on 0808 800 0303.
Very best wishes to you both,
Janice
Forum Moderation Team
Thanks Janice for the kind words,
She mentioned the backache to the consultant but he didn’t seem to think it had much to do with the PD.
She also has feelings of nausea, especially in the mornings, despite being careful what she eats. She had an endoscopy in January which found a small hiatus hernia, but nothing more serious, and was prescribed omeprazole which helps some days but not always.
Does nausea and back pain rings bells with anyone else?
Thanks
Peter
Update:
After several months on Rasagiline she reported to the consultant that she didn’t feel that it was doing any good. . So, he has now prescribed Madopar. She has started taking 1 tablet 3 times per day. After a week she increased to 1,1,2 as directed. So far, so good, but weeks 3 she has increased again to 2,1,2 and now, the problems start.
Saturday she had 2 in the morning, but then we had an hours drive during which she felt very ill. When we arrived she still felt bad and stayed in the car for a couple of hours, sleeping for part of the time, after which she felt well enough to rejoin the human race for the rest of the day.
Since starting this tablet she says that the pains she was getting in her back have almost disappeared, but the tremor in her arm has worsened and a tremor in her leg is now apparent.
Can anyone relate to this and are these symptoms likely to lessen as her body gets used to this drug?
Thanks
