New to Selegilene

[Tiger101]

Hi, I am new to this site. My husband has been diagnosed with Parkinson's and was put on Ldoppa/cardoppa and is resistant to it so he had to stop taking it. They want him to start taking Seligeline. I'm reading on it and getting afraid to have have him start with all the dietary restrictions! He's supposed to start with 5 mg 1 x per day. Any suggestions or advice? Thanks in advance.

[faridaro]

Rasagiline (generic for Azilect) is supposed to have the same pharmacological action without dietary restrictions.

[QNTT]

There we go AGAIN with SELEGILINE and restrictions !

You are new here therefore exempt

THERE ARE NONE, since its MAO type B

Read the wiki piece about MAOi :

en.wikipedia.org/wiki/Monoa...

In part reads:

"Of note, no dietary modifications are needed when taking a reversible inhibitor of MAO-A (i.e., moclobemide) or low doses of selective MAO-B inhibitors (e.g., selegiline 6 mg/24 hours transdermal patch).[27][28][29] "

I am on Selegiline 10 mg / day and eat tons of aged cheese, no issues with BP.

BUT PD has constipation issues and cheese can clog you up !

I don't get much from Selegiline though

NOW your turn, tell me WHAT you mean RESISTANT to LevoDopa / Carbidopa ?

WHO told him that ? The neurologist or ?

I have not responded to L / C also, but another version Madopar, (uses Bensraside instead of Carbidopa )

[pfolks in reply to QNTT]

OUCH!

[QNTT in reply to pfolks]

What ? I was harsh ? I KID Tiger, wasn't it obvious ?

[Tiger101 in reply to QNTT]

Thanks for the information! When he took the L/C he got terrible tremors, would stand up and try to walk he would fall over. Could hardly walk stayed in bed until it wore off.

[Tiger101 in reply to QNTT]

Why all the warnings on this medication then? It's scary!

[JohnPepper]

I started tainf sinemet and symmetrel in 1992, when I was diagnosed. In 1994, my neurologist took me off those two and put me onto selegiline, which I took for the next eight years. Then, in 2002, because I felt so much better, I came off that and have not taken any Pd medication ever since.

That was not all i changed in 1994. I stopped going to the gym for 90 minutes a day, and started doing fast walking, for one hour a day, three days a week. I also gave up my job and avoided as much harmful stress as I could, became positive about my Pd prognosis and started doing Su Doku puzzles to keep my brain active.

Look at my profile!

[Eliza-Jane in reply to JohnPepper]

I have read your book John and I am impressed. I have been on Stalevo for about 10 months and I hate it. I had a tremor in my right arm, but could still paint and draw and life was good. Now 1 hour before my medication is due I am shaky and nauseous. I feel I am addicted to the drug and would be better off without medication. I was on Stalevo 150 and when I got shaky my Neurologist increased the dose to 200mg. I think the shakes are just from the medication. Do you agree? I am now too tired all the time to paint. I walk 6.2 kms in an hour most days and exercise regularly. I am planning on seeing my GP next week to see about weaning me off all medication.

[QNTT in reply to Eliza-Jane]

JP's walk is specific, FAST WALK, you mastered that ?

I have NOT but not trying hard either !

I ride a Segway 2 wheel "scooter" for exercise, and that gets me so tired no energy to try JP's Fast Walk

[JohnPepper in reply to Eliza-Jane]

Because we are all different and because we react differently to medications it is impossible to give advice on medication.

My way of looking at medication is that if it does not slow down the progression of Pd then why take it? You may say, well it helps you, so then you must carry on taking it, not to slow down the progression but to hide the symptom. My goal is to slow down or even reverse the symptoms of Pd. I don't let my tremor affect my life, I have accepted its presence and have learned to live with it.

Regardless of the tremor, I live a 'normal' life, totally free of any Pd medication.

[Eliza-Jane in reply to JohnPepper]

How did you slow down the medication? As I said, I am on Stalevo 200mg 4 times a day at the moment but now it isn't lasting as long. I still have a supply of 150mg. I am considering trying to go back to that and maybe have it more often. The last thing I want is to increase my medication.

I am having more down time through the day. I hate wasting any time of my life sitting under a blanket waiting for the next pill.

[grower]

Am on selegeline and as is said there are no eating restrictions and in fact no side effects either thankfully. Interested to hear what you mean that he's resistant to l/c, just not working? Or has bad side effects?

[Tiger101 in reply to grower]

It made him feel worse. He doesn't have constant tremors. It was giving him tremors. Couldn't walk straight would just fall over when trying to stand. I asked why and was told he could have done other Parkinsonism syndrome and was suggested he go to the movement management team at Johns Hopkins. Their earliest appointment is in November! Sigh hurry up and wait. We've been going through this for over two years. He's in a lot of pain from his knees to his feet. No one can figure out why. Extremely lightheaded sitting, standing with ortho static hypotension .

[Hikoi in reply to Tiger101]

Tiger

This sounds like a bad case of low BP. C/L as with just about all pd meds can lower bp which could lead to falls and feeling unsteady etc, not sure about the tremors. I have to make sure Im drinking plenty if I get light headed. it helps and is he on any bp medcation?

All these problems are due to the invoivement of the autonomic system in pd.

Not sure of the leg pain unless it is a crampimg pain - dystonia.

By now you should have been to John Hopkins and may have some answers. How di you get on?

[QNTT]

The complexities of Levodopa response, boy that can get COMPLICATED !

To be honest I do not get DeltaFosB at all, and I am used to reading studies. Anyone care to Splain it like I was 10 y.o. ?

From: en.wikipedia.org/wiki/L-DOPA

===============

" The two types of response seen with administration of L-DOPA are:

The short-duration response is related to the half-life of the drug.

The longer-duration response depends on the accumulation of effects over at least two weeks, during which ΔFosB accumulates in nigrostriatal neurons. In the treatment of Parkinson's disease, this response is evident only in early therapy, as the inability of the brain to store dopamine is not yet a concern."

================

ps: i get the half life part, the DeltaFosB I don't