Hi

I've been on 3 x sinemet plus since November last year. I've had PD for at least 9 years but it was misdiagnosed as MS until a year and a half ago. I avoided meds for as long as possible. The sinemet worked well for a few months, then started to wear off so I took half an azilect for a couple of months. It increased the on time really well but made me nauseous in the morning. After a few weeks I started to feel really hungover every morning and the fatigue that the sinemet had eradicated came back slowly. Also I think the azilect was aking me depresesd but it might just have been life! So I stopped the azilect and for a week the hungover feeling went, but the fatigue and general feeling of malaise crept back. Now I've been off the azilect for a month or more and am feeling totally exhausted, foggy brained and overwhelmed all the time (and still depressed - but this might be the fatigue causing it). The sinemet is helping my motor control still but not as well. I know if I talk to my neuro about this he will just give me more drugs (he suggested I try stalevo). Is this just what happens at the end of the sinemet honeymoon? I am NEVER taking agonists, so is my only option to take more sinemet? I have some zandopa which I could try but am not sure if I take it with the sinemet and how much. I have been through loads of stress recently which is obviously a big factor. So apart from improved motor control (I couldn't walk before the sinemet , now I can) I feel as dreadful as before the sinemet.

Help!

Trixiedee

...... to most of us, that certain days or even weeks can go by without the medication working very well. This is why it's so important to have a neuro that will let YOU do the talking and tell him/her what you think you'd lke to try. You might try adding Amantadine 200mg/day, and stop eating meat. Bring your dose of Sinemet up or down and see what happens; i started at 3, 100/25's a day, now it takes up to 10 100/25's and 2 or 3 200/50's controlled release and sometimes that gets my blood pressure so low i can't stand up, but 15mg of Amphetamine takes care of that. Always remember, this is a progressive condition, a"moving target", so expect to try other types of medication. if you shake like a leaf in the breeze, you might find the addition of a benzodiazepine to help with that. iF you get too nauseous from the meds , Ondansetron can take care of that. Pain, worry and depression can knock you right out of your med tree, so a PWP has to try to let go of many things that they used to like to do, but you must realize that you just can't do them anymore. There are no "magic bullets:" for PD. Wait for our cell transplants, they are coming, when, i don't know, but have faith and hope that thiis disease can be cured. Another idea. You might need more Carbidopa, as everyone's peripheral decarboxylative enzymes work more efficiently than others, so you aren't getting enough dopa intro the brain. Ask your neuro to augment your meds with Lodosyn. Have you been through agonist alley? It can be hell, but some people find that agonists work better than sinemet does.

trixiedee-

ol cs has given you good advice so take mine as added to his.

There's been a lot of change since November (not much more than six months) and that is unusual. The stress may well account for it but be aware of the possibility of sneaky infections, too - bad teeth or UTIs can wreck you.

Change brands of sinemet and do it at least twice. There is something evil afoot in the world of Big Pharma right now. Weird shortages and varying quality - almost as if someone was trying to force us to abandon the cheap stuff and trade up. Try a couple of weeks of something new.

Agonists can be hell for some but for others not. Requip is supposed to top out at 24 mg/day but I was at 32 for awhile and the original trials had folks up in the 50+ range with no problems. Don't rule it out.

Good luck - Rick

Aah, I've had cystitis for the past fortnight, maybe that has added to the worsening symptoms. Is there anything I can do to recover from that more quickly?

Trixiedee

I'm in the UK and get branded sinemet rather than generic, and have done since I started.

Trixiedee

Ol' cs knows his stuff about medications...All I can add is my experience

I have had symptoms for 9 years, and was dx in 2004

I did not start taking meds..(Sinemet)..untill about 2006 if my memory serves me right..I took a small dose of Mirapex for a while prior to that, but it didnt really do much

When I began Sinemet, I was taking 3 x 25/100 daily..After a couple of years I had to increase the dose to 3 x 50/200, and found that CR worked best for me

About 2 years ago the CR stopped working..I was going through day after day of walking around like a zombie..I still had some Sinemet 25/100, so I started to take them inbetween doses of 50/200 Sinemet CR

That wasnt working out so well, so I called my neuro and asked if I could change my appointment, and get in there to see him ASAP

He gave me some samples of Stalevo 200 mg, and suggested to take them 3 times per day, and I did..It worked out well, and has continued to work out well since then..Stalevo has been more predictable for me..I have not had too many failed doses, however, Stalevo is notorious for dyskinesia, and it has slowly, progressively gotten worse..Usually, I only get it in the morning when my meds are kicking in, and in the evening when they are wearing off..If I get dyskinetic during the day time, it is usually because I did not take my dose on time, or I am having an absorbsion problem for some reason..My on time was lasting untill about 9:00 at night when I began Stalevo..Now it lasts untill 6:00 in the evening, so my neuro suggested trying to take 4 doses instead of 3 to see if I could get another 3 hours of on time per day..I tried it for 3 weeks, but it didnt work..Instead of getting 3 hours of on time, I was getting maybe one hour of on time, and 2 or 3 hours of dyskinesia..Then I started getting an hour or so of dyskinesia everyday at about 5:00 in the afternoon..That was when I decided that as bad as my off time had become, it was a tad better than putting up with 3 hours of dyskinesia everyday..I was afraid that if I didnt stop taking that 4th dose, that I might have ended up with dyskinesia all day long, everyday

So Im back to 3 x 200 mgs Stalevo per day..I have also been taking 3 x 100 mgs of Amantadine daily for about 2 years as well, but I dont know if the Amantadine is working or not

So I put up with the cronic freezing episodes, and difficulty walking that are a part of my everyday life, after 6:00 every evening..I have not tried Azilect, and my neuro suggested Selegeline to try to get another 2 hours of on time per day, but I havent tried it yet

I have dabbled with Zandopa..I am a commercial fisherman, and I retired in 2005, but still fish part time..I take a heaping teaspoon of Zandopa, in addition to my regular pd meds before I go out, and it works great..I have been doing that for about a year, and it has never failed to keep me almost symptom free so I can do my job..I very seldom take Zandopa unless I am going to work, because it seems to me, that the more L-Dopa I feed my body, the more it wants to keep me medicated without unexpected off times during the daytime

I was experimenting with it during last week to see if I could get a few more hours of ontime, but it seems when the Comtan in the Stalevo is wearing off, the Zandopa wont absorb, and nothing happens..Maybe I have to play around with the timing, but I have been on a roller coaster for about a month now, and Im not up for any experimenting for a while

Also, my past experinces with Zandopa, this was before I started taking Stalevo, is that it wears off very, very fast..It is like somebody pulling the plug out of the wall..Not a good thing if it happens while driving

I am very sensative to med changes now, and it has been the the status quo, that for every change I make, there have been consequences for it..I have been trying to find the magic bullet..If it does indeed exist, it is very elusive

I have thought about DBS, but that is about as far as Ive gotten with that..Im not ready to go through that, and not sure if I ever will be

One last note..In my case, I was forced by insurance to take Sinemet and Comtan seperately, for a month, when I first began this journey with Stalevo..Taking the two drugs seperately was hell, in terms of unexpected offtime, and dyskinesia..Thankfully my neuro contacted the insurance company and told them that I needed Stalevo, and they approved it

You might ask your GP for referral for evaluation of vascular Parkinson's. If there is blockage of blood flow, this could also account for the deviations.

Hi Trixiedee,
I am in the uk too and got two different branded boxes of sinemet this week. One is working differently from the other. I had been getting branded in a transparent bubble pack for a few months, sometimes from different sources (spain, france). It worked great. This month I have one box MSD all labeled in english, and I was achy and tired all the time on it. The other box has dark navy blue stripes, is a different batch number completely, and seems fine. The ones that are not so good seem harder and shinier than the others.I had a batch like this early last year, luckily had some accumulated from when I was able to reduce my dosage, and did not have to carry on with them. Despite whatever the drug companies say not all sinemet is equal. In the US they have changed the way the pills are shaped and coloured, and maybe the formulation is slightly different too, people have noticed a difference, and the pills are not scored making it difficult to take a half dose.

If your medication is wearing off and not working so well perhaps the addition of entacapone (Comtess in the UK) would help. It has made a huge difference to me. I have the two separately so that I can fine tune sinemet to my needs, so I did not have to increase meds by 100 at a time. This has worked very well for me, though the two are available in a combination drug called Stalevo, which works well for some. You really have to learn what is best for you. Increasing doses is not always the right way to go. It can be that you are just not having enough ldopa get to your brain. Another drug that many people I have met in the UK seem to be doing ok on is Requip XL, an agonist, but seems to be better to tolerate for some. Ask your neuro or PD nurse about these. AS you can see from this I have had a different experience from Steve, and there is no one way that is right, it is all about getting it right for you. I have not tried Zandopa, would like to, though as it too provides ldopa have my reservations when I read about it wearing off fast. Keeping meds low and smooth seems to work best for me. As the side effects of these drugs are so similar to the symptoms of PD I have always erred on the side of caution. I have to admit I have never wanted to be on agonists either, but this does not mean they are not useful for some.

Any kind of infection can result in the way you are feeling, and could be a factor. Any UTI type problem especially. In MS they are well known to trigger relapses. Because we do not go into acute phases in the same way this is only anecdotal, but lots of people say that infection and/or inflammation have made them feel worse. Though usually I avoid antibiotics, for this I would take one, though it can be hard to convince the GP that I need one.... it usually helps a lot. In this warmer time of year make sure you drink enough too......

I'm not giving medical advice and I'm too poor to sue anyway , but if I were in that situation I would hound my GP for an antibiotic while I was taking green tea extract - see below. Don't underestimate these infections. About two years back, one nearly swallowed our own Ron Hutton when an abscessed tooth took him by surprise.



1. J Neurosci Res. 2004 Dec 1;78(5):723-31.

(-)-Epigallocatechin gallate inhibits lipopolysaccharide-induced microglial
activation and protects against inflammation-mediated dopaminergic neuronal
injury.

Li R, Huang YG, Fang D, Le WD.

Health Science Center, Shanghai Institute for Biological Science, Chinese Academy
of Science, Shanghai Second Medical University, Shanghai, Peoples Republic of
China.

Microglial activation is believed to play a pivotal role in the selective
neuronal injury associated with several neurodegenerative disorders, including
Parkinson's disease (PD) and Alzheimer's disease. We provide evidence that
(-)-epigallocatechin gallate (EGCG), a major monomer of green tea polyphenols,
potently inhibits lipopolysaccharide (LPS)-activated microglial secretion of
nitric oxide (NO) and tumor necrosis factor-alpha (TNF-alpha) through the
down-regulation of inducible NO synthase and TNF-alpha expression. In addition,
EGCG exerted significant protection against microglial activation-induced
neuronal injury both in the human dopaminergic cell line SH-SY5Y and in primary
rat mesencephalic cultures. Our study demonstrates that EGCG is a potent
inhibitor of microglial activation and thus is a useful candidate for a
therapeutic approach to alleviating microglia-mediated dopaminergic neuronal
injury in PD.


PMID: 15478178 [PubMed - indexed for MEDLINE]

Infections..I completely missed that point..Thanks for the info!