I was taking 1335mg of Madopar a day when my consultant passed away. My new consultant cut this down to 1000mg a day and prescribed 50mg Safinamide. The Safinamide had me bouncing off the walls dropping things, bloating stomach. I was covered in bruises. so 50mg Amantadine was added, this stoped the bumping into everything but I found Safinamide gave me a dry mouth, sleepless nights, weight loss at one point going down to 45kg, queasy, off food etc. (went from size 14 to 10) Now I am getting bad fast breathing, dry throat, lower back pain, lower front ribs aching, muzzy head/headache and generally feel rough. This is worse in the afternoon / evenings half an hour before medication due and up to an hour after medication taken. I can use a 50mg dispersible tablet which takes this away but I am told no more than 2 a day. At night I am awake every 2 to 3 hours with aching joints which click as I try to turn over. 2 weeks ago I developed dry red itchy patches over my arms and trunk. I tried stopping Amantadine but then couldn’t move at all to turn over or get up at night. Legs and arms very weak and duvet felt like lead weights had been added to it. GP prescribed cream for rash and 50mg Sertraline for fast breathing etc. Told by PN who spoke to consultant NOT to take as it interferes with Amantadine. So am unable to do anything after 2pm.
Current medication 50mg Amantadine at 8.00 am, 150mg Madopar every 3 hours from 8.00am and 200mg CR Madopar at 11.00pm.
I live by myself so need to be able to function.
No PN available until March 21st.
Does anyone else get these panic type effects when meds wearing off? Any help would be useful. GP suggested trying online help with self help site.
Hi Nightowl
I am on sinemet, azilect and pramipexole. Apart from bruises and headaches I could have been
writing about myself what you have written.
Has anyone given you any indication that it’s a side effect of medication or is it Parkinson’s. Began to think it’s me getting stressed because it’s uncontrollable. It’s stopping me going out or ding anything. I was diagnosed in 2012 it’s only the last 14 months it’s become a real problem.
Hi @Nightowl What you need to do is to speak to your Neurologists Secretary & tell them what is going on & that you need a change from Safinamide because of the effect it is having on you. Personally i’m on 5 x 250mg Madopar a day plus I have a Deep Brain Stimulator(DBS) fitted. It is evident your local GP doesn’t have a scooby about Parkinsons which is why I have suggested what I have, it is about knowing what to do in these situations. Good luck & keep us posted on your outcome, stay safe.
Les
I came off Safinamide mid November but am still taking Amantadine. The last few months have been difficult. After Safinamide was prescribed Mirtazapine that was stopped mid January due to sleepiness during the daytime and it didn’t improve things. Then they tried clonazepam which didn’t work either. The only thing that works is having an extra 50mg dispersible tablet with my usual medication, but I am only allowed 2 a day So try to save them for when I am desperate. I’m going to try contacting consultants secretary to see what next. Trying to keep going.