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Topic Apokyn Injections Go to previous topic Go to next topic Go to higher level

By flowers12 On 2017.12.04 14:49
With all the problems my hubby is having with wearing off lately I was told by a nurse, who is active with a Parkinsons group, that this could help with wearing off symptons. Is there anyone who has used this?

By exhausted wife On 2017.12.05 06:13
My husband swears by it. Unfortunately, many insurance refuse to cover the cost (I was lucky).

By flowers12 On 2017.12.05 19:03
How often does the injection need to be used? Where is the injection site?

By exhausted wife On 2017.12.05 20:14
Apokyn is an as needed supplement. It can be injected up to 6 times a day. If it is working, the Apokyn "kick starts" other Parkinson's meds.

My husband has been using it for 10 years now. Unfortunately, on some days it has no effect. Those are his really bad days. On other days it is like a miracle drug. And then there are the days he does not need it. Go figure.

The injection site varies - my husband prefers lower abdomen.

I always have Apokyn with us when we travel (plus an extra injector and needles).

By flowers12 On 2017.12.05 20:21
I'm wondering what kind of "off-time" your husband has? My hubby does the tight closed eyes, open mouth, left arm shaking only and he sometimes moans. This reaction lasts from 1/2 hour to 1 1/2 hours. Sometimes twice a day. The neuro said it's wearing off the meds. I would hope something would help him. We've tried the meds at 2 1/2 hours during the day but it's still happening.

By exhausted wife On 2017.12.06 05:31
With apokyn my husband really does not have "time off" due to meds wearing off. When he feels the symptoms coming on, I inject. But there are some days the disease is so bad he just cannot function normally. (We all now have a new normal). Then he rests. Fortunately those days are not common.

He gets Rytary every three hours from 5 a.m. to 8 p.m. He does sleep most nights for 4-6 hours, sometimes more, and easily returns to sleep once re-adjusted. No meds from 8 p.m. to 8 a.m. (There are 9 separate medications daily).

After an apokyn injection, if it is working, it takes effect in about 10 - 15 minutes. It does work most days. Again, I am never without it.

By flowers12 On 2017.12.06 16:22
Was there any side effects when he first started with the injections? Did your husband start with Carbidopa-levo then switch to Rytary? We go to the Neurologist in two weeks and maybe I should ask about Rytary.

By exhausted wife On 2017.12.06 18:57
He had no side effects at all from the injections. People in public who see him before and after the injections are amazed at the change. (Flight attendants are really impressed).

Some patients like Rytary. Some think it is horrible. My loved one took it. Was unhappy. Continued for 2 months. Now he really likes it. He has been on it for years.

Each patient is so different. Just keep trying. And I cannot emphasize enough - make sure he can get sleep with his meds. They work so much better.

By flowers12 On 2017.12.18 22:00
We saw the Neurologist today and my hubby has low blood pressure so the Dr said he couldn't do Rytary. I asked if we could go back to 2 sinemet every 4 hours and he said lets do 2 every 3 hours and see if it helps his wearing off. We will also do a extended release sinemet at bedtime. The doctor was afraid my hubby would have hallucinations with the increased sinemet. If this doesn't work then we can try the Apokyn injections. I hope our insurance would cover Apokyn. So tomorrow we will begin the new pill schedule and I hope it helps and I really hope it doesn't cause hallucinations.

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