Parkinson's Disease Support Group

Rajesh, my MDS told me the same thing. In fact he took me off the Requip that the neurologist had me on. He told me that the longer you can go without meds the better. I had read that some meds if taken early in the progression would prevent some symptoms. He told me that that hadn't been proven with clinical tests.

My husband was also told to hold off on meds when he was diagnosed a few months ago. I've been confused because so many seem to be saying they went on meds immediately and I've also seen conflicting stuff on whether or not early meds prevent some symptoms.

A few months ago I asked the same thing that Bwilli has asked and the consensus seemed to be he should start meds right away so I'm glad to see that others have been told to wait also.

My uneducated gut extinct is the longer one can go without medication (especially given some of the nasty side effects) the better.

Hi - My experience was a little different. My MDS started me on low doses right away as my symptoms by the time I went were progressed (lack of insurance). Anyhow, my MDS was one in a group of 4 specialists, who treated MJ Fox in NY, and he has told me that one reason (not THE reason) that MJF's symptoms are so progressed is that he overdosed (not literally) on meds early at the onset to alleviate symptoms so he could work longer without being noticed that he had PD. All to say, the earlier you start, the more you take, the earlier and more pronounced the side effects later or the lack of potency towards the disease's effects. Hope that helps.

I was shocked when I watched a recent
MJ Fox interview with Katie Couric on youtube. The seemingly rapid deterioration in his condition really scared and depressed me. I'm glad to see an explanation. It makes me feel better. Thanks ladybug for that info.

Let me jump in on the other side of this issue. In my case, I was undiagnosed for a year, due to a primary care physician that needed some re-education. At the time (8 years ago), I needed to lean on my wifes arm to get from a store to the car. Once diagnosed and put on medication (Requip for 6 months, then Sinemet) since then, I was able to continue working, shovel the snow off the walk (slowly), drive to other States to visit relatives, and in general have fun !!!. I am now age 71, and really don't have expectations of making it much past 75. I am still on Sinemet and find I have to watch the timing of when I take it. I am still getting about and doing things. I think it all depends on your age at onset. I would hate to see anyone hold back too much, while feeling poor, then finally allow themselves to take the medication only in time to be limited by some other disease that might come along with advancing age.

Please keep in mind that what worked for me, may not work for you. Just use this post as one other input to consider. Read, ask lots of questions, and seek more than one medical opinion. Good luck,

Bill

I was diag. almost two years ago and find billr statement about timing interesting. I take sinemet 4x aday 25/100 and requip 3x daily. Im not exactly percise and cant say i feel any better or worse at any given time of the day. My dr says im on enough meds . IM 56 AND SEE A SLIGHT DGREE OF BODY STIFFENING . i have a bad left arm and hand tremor right from the start and find it exhausting at times.I guess im curious about bills progression that makes him feel 75 is all thats left. I hope im not being intrusive. J ust having trouble understanding this disease.. bobp

I have to jump on the same side as bill. It took them 2 years to finally dxd me with PD. I'll never know how I got through those 2 years. It was awful. Anyway when dxd, I was started on sinemet right away and in just a few days I started feeling like a new person. But those two years before dxd were just so awful.Had they been able to dxd it earlier I would have wanted the meds ASAP
Personally I don't think the suffering is worth putting off taking the drugs that help you get through each day. And there are so many different ones and different dosages out there now that a person should not have to suffer as I did. I have had PD ii years {dxd} now and am still doing pretty good. I can tell you, I would not want to live those 2 years, with no help, again.
Just my 2 cents worth

Just wanted to reply to BobP and anyone
else I may have scared with my life expectancy estimate. This has very little to due with the fact I have PD, and also not too much to do with the serious heart problem I had at age 56. I had a virus attack the lining of my heart, so to give the heart muscle room to expand, they used surgery (Pericardectomy) to peel off the lining like removing the skin of an apple. It has more to due with how long my parents lived, and how many of the neighbors are battling or have lost the battle to cancer. Age 75 is just a number I use in making decisions such as should we sell the house and move into a condo etc.
Enough of what is spinning around in my head. To keep with the Parkinson's thread, google your way to the drug Sphermine that is currently undergoing trial - it could be that there is some help to our problems coming.

Thanks for the Sphermine tip, Bill. I'm going to check it out after I finish this post.

Perhaps this has previously been done here before but one thing I've been thinking about is a thread where people might explain their symptoms and the severity of them when they first started meds. With new people coming on board all the time it doesn't hurt to repeat it even if it has all been said before. That might give us all a better idea of why meds are necessary or more important for some rather than others at a given point in time. Not that what is true for one would always be true for others but it might help give a better feel for the differing opinions on why some need meds right away and others don't. I'm certain even one's age and lifestyle needs must play into it a great deal as well. That's the kind of stuff I would really like to know.

I've been quite confused at all the things I've read everywhere at how long it can take for PD to be diagnosed - even after repeated visits to MD's because my husband on the other hand went to a GP who had him into a Neuro within a couple weeks and she gave him the verdict right then and there the first visit. I think the only major symptom he has/had is a tremor in his right hand that he had for about 9 mos. to a year. Of course, now that we know I can think back and other things point to PD - ie. a stiff neck we thought was due to the angle of his monitor, eyesight getting worse, quality of his handwriting really taking a beating, etc.

Anyway, the tremor is still pretty much his only major symptom (except for maybe some pain and/or stiffness I think he tries to hide from me). But all in all he is not otherwise debilitated to a point where it interferes with his life and/or work. Maybe he and others like Bwilli were just lucky to be diagnosed early enough that meds are not a neccessity right off the bat.

Here's some info on Spheramine that Bill mentioned. At first I was discouraged because the articles I saw were dated as far back as 2002. But in retrospect, knowing the slow pace of the FDA that wound up being a good thing because usually when one reads these things you know there are still many years of research that have to be done - so we've already got at least 5 years under our belt on this one. I'm especially encouraged by the last two paragraphs below.

http://www.titanpharm.com/pt-spher...

(snip)

Spheramine is an innovative, standardized cell therapy using normal human cells. These cells, retinal pigment epithelial (RPE) cells, are placed on microcarriers and injected into the brain to provide a localized continuous source of dopamine in brain regions deficient in dopamine.

(snip)

Based on the encouraging results from the pilot study, Titan and Bayer Schering Pharma AG initiated a 68-patient, randomized, double blind, controlled Phase IIb clinical study to further evaluate the safety and efficacy of Spheramine. Enrollment in the study is complete with a total of 71 patients treated. Results from the study are expected to be available in the third quarter of 2008.

The FDA has granted Fast Track designation for Spheramine. The FDA's Fast Track Program is designed to facilitate the development and expedite the review of drug candidates that demonstrate the potential to treat serious or life-threatening diseases and address unmet medical needs. The FDA has also approved Orphan Drug designation for Spheramine for the treatment of advanced Parkinson’s disease.