[Isis]

This post is not meant to be about me - but I must express this out loud.
I AM EXHAUSTED.

As I've written before, the medication circus has been on a merry-go-round over the past few months. Before that he had been on Artane and Sinemet.

Two months after Ropinerole was started to help with his stiffness last September (2009), Friend (V from now on) started to get dystonia on his left toes. Toes would curl upwards and a little to the left.
That it was uncomfortable need not be said on this forum.
He went to see a MD Specialist for that who rx-ed Entacapone 100-mg on 15th December. There was a significant increase in the Tremor, but the doctor raised it to 200-mg on the 22nd. The tremor became so bad that he had to come off it after the second dose on the very next day. The severity of the tremor improved dramatically.

He was away for a few days after that. On the 31st of December I started him on DXM. The following week was the best I have seen him in a long time. He slept well. The tremor and the stiffness improved. The dyskinesia was not at all visible. His face had more life. I personally thought he also had more colour on his face. At any rate he looked a lot better. A doctor friend of him who watches over him as hawk like as I do told him the same.

Then on the 9th of January, he was prescribed Amantadine 100 which made no difference. On the 16th another 100 was added and since he felt there was no benefit, he came off the on the 30th of January. An aside here - I personally felt that the Amantadine negated the effects of the DXM, I felt he again went back to the pre - DXM days although he was still having it.

On the 6th of February he has been started on Azilect .5.
Dyskinesia is BAD.

He now wants to get rid of every other drug but Sinemet, Artane and Inderal - both of which help with his tremor. Towards that end he has dropped I -mg of Ropinerole. (He has been on the Rop./Sinemet combination before and not the Azi/SNM, so I suppose that may make some sense.)
He says he is feeling stiffer. In another week the tapering off of the Ropinerole will be done.
The dyskinesia is of course no better. We will have to wait until it is Azilect's turn to be tapered off to see what happens I suppose.

And then there will be Artane, Inderal, and Sinemet.

???????????

I really am sorry about the grammatical/typo and spelling mistakes.
I have just used the spell check, but still don't have the energy to look at the grammer.
The thread header can't be corrected anyway.

[reverett123]

Isis-
"Circus" is an appropriate term. Every drug added increases the potential for problems. The only defense is meticulous record keeping and that becomes very difficult.

Is DXM out of the picture now? Is there a reason other than V's resistance?

Originally Posted by Isis

This post is not meant to be about me - but I must express this out loud.
I AM EXHAUSTED.

As I've written before, the medication circus has been on a merry-go-round over the past few months. Before that he had been on Artane and Sinemet.

Two months after Ropinerole was started to help with his stiffness last September (2009), Friend (V from now on) started to get dystonia on his left toes. Toes would curl upwards and a little to the left.
That it was uncomfortable need not be said on this forum.
He went to see a MD Specialist for that who rx-ed Entacapone 100-mg on 15th December. There was a significant increase in the Tremor, but the doctor raised it to 200-mg on the 22nd. The tremor became so bad that he had to come off it after the second dose on the very next day. The severity of the tremor improved dramatically.

He was away for a few days after that. On the 31st of December I started him on DXM. The following week was the best I have seen him in a long time. He slept well. The tremor and the stiffness improved. The dyskinesia was not at all visible. His face had more life. I personally thought he also had more colour on his face. At any rate he looked a lot better. A doctor friend of him who watches over him as hawk like as I do told him the same.

Then on the 9th of January, he was prescribed Amantadine 100 which made no difference. On the 16th another 100 was added and since he felt there was no benefit, he came off the on the 30th of January. An aside here - I personally felt that the Amantadine negated the effects of the DXM, I felt he again went back to the pre - DXM days although he was still having it.

On the 6th of February he has been starten on Azilect .5.
Dyskinesia is BAD.

He now wants to get rid of every other drug but Sinemet, Artane and Inderal - both of which help with his tremor. Towards that end he has dropped I -mg of Ropinerole. (He has been on the Rop./Sinemet combination before and not the Azi/SNM, so I suppose that may make some sense.)
He says he is feeling stiffer. In another week the tapering off of the Ropinerole will be done.
The dyskinesia is of course no better. We will have to wait untill it is Azilect's turn to be tapered off to see what happens I suppose.

And then there will be Artane, Inderal, and Sinemet.

???????????

[Isis]

No Rick, DXM is only out of the picture at present because of the Azilect.
The minute Azilect is stopped he will get back on it.

I am totally a believer, and have not yet seen any evidence to change that.

I am also not convinced that 3 -mg of DXM twelve hours after or before .5 or even 1 -mg of Azilect would be capable of doing so much harm -,
especially considering the impossible food restrictions that one has to stick to while on Azilect and I am sure fail more than occasionally. But since that is the popular belief, I need to go with it.

Do you have any thoughts on it?

[Conductor71]

Merry go round and circus come to mind as well as the classic cartoon "The Jetsons" with George calling "Jane, get me off this crazy thing". It becomes more and more difficult tell what one is dealing with when faced with a treatment that merely manages symptoms. We can't tell a beginning and end after a awhile.

I can't offer much in the way of taking DXM near the Azilect. I am quite frightened of some of the newer PD Meds and had a bad time with Azilect in general, so my take would not to court disaster by taking them closely together.

As for V deciding to stop everything but his core regime of Artane, Propranolol, and Sinemet... this sounds like a solid, reasonable approach so he might be able to isolate what is causing the dyskinesia. Once the Azilect is out of his system he could try the DXM again and see how he fares.

I'm thinking (hoping) that the extra stiffness could be a temporary symptom rebound. Often, stopping PD meds can cause a rebound or symptom flare up that fades away.

V is fortunate to have you as a friend.

Laura

[Jim091866]

Hi Isis,

In your message you mentioned what seems to be the soup of the day as far as meds go. I am going to take some liberty here by saying that your friend seems very responsive/sensitive to the meds so it may take a while-longer than a month to see the difference. All the agonists, reuptake inhibitors whatever you call them were just too inconsistent for me to manage them. I have tried entacapone, stalevo, amantadine, requip, mirapex, whew!! I can't remeber all of them. Yup selegiline too. Right now I take 2 tabs 25/100 every 2 hours. Keeps me on my feet all day, regular and no dyskinesia. I have had DBS and this is the same amount of medication that I was taking prior to DBS except I don't have the dyskinesia that's where the DBS helped me the most. I think that you have to find what works for you and sometimes that takes a while but piling on the meds is just too much to figure out which drug is causing what symptom. You don't say how old your friend is but why hasn't he been evaluated for DBS? It is great for tremor!

[Isis]

Laura, thank you again for your response.

I am also hoping the same that the extra stiffness is a rebound effect. He is down to I -mg Ropinerole X 3.
Now the dyskinesia is so bad I'm thinking perhaps we should see how it is if we stop the Azilect (.5 -mg) from tomorrow and continue with the Ropinerole at the dosage it is now.

About him being lucky to have me as his friend, I suppose it is 'karma' (!)- it is he who diagnosed me with lupus by browsing the internet for days on end when for years no doctor could figure out why I was so constantly ill. It was only then the doctors asked for the relevant tests and I got a confirmed diagnosis.


Jim, yes he is extra responsive/sensitive to drugs. It always seems to create havoc. It has been more than sixteen days since the Azilect was started and the dyskinesia has shown no sign of getting any better. He was really much better over all while on DXM.

V is fifty-six Jim and at this point totally against DBS. A friend's mother had a DBS, and was better for about eight months before the disease came back with a vengeance. She is baaaaad now. It is terrible to see her.

[Isis]

Originally Posted by Jim0918

I am going to take some liberty here by saying that your friend seems very responsive/sensitive to the meds so it may take a while-longer than a month to see the difference.

Jim, I know that maybe we should give the meds more time, but the side effects are so terrible that I get scared.