Has anyone gotten worse since they starte... - Cure Parkinson's
Has anyone gotten worse since they started taking PD meds? My husband takes Carbidopa/Levedopa
Fortunately for me, the meds were very beneficial, although after 2+ years, I may have to up the dose...and a mild dystonisia has started. I take C/L ER 2x per day and one Azile$t in the morning.
Perhaps your hub does not have classic PD? Usually the acid test is improvement after starting the meds.
Best is to check with the PCP or brain doc. Good luck!
thank you. My thought is if your taking a medication for something, you should get better. But since he started taking these, he hasn't, just gotten worse. He has an appointment with the neurologist in Jan.. Hope he listens to my concerns. Thanks again
I was diagnosed in Oct 2007 and refused to take meds until Dec 2010. I feel so much better and am much more mobile taking carbidopa/levedopa 3 times a day.
Effects of Levedopa do range person to person. It could currently be in-effective, where your husbands condition is progressing in a normal manner. Levedopa can take years to show significant improvements.
You should get 2nd and maybe 3rd opinion like I did I actually went to the mayo clinic where did a bunch of test than they gave me my leva dopa in small dosage and they sat there with me to monitor my every min. Till they got it right.
I also went to the Mayo Clinic. Was told I didn't have PD. Went off all meds, returned and was told I did have PD.
I was given a perscription and they told me to find a neurologist closer to my home.
For me it was like night and day. after going on meds I was able to go back to work. I took C/L_dopa at fist as a diagnostic then after we confirmed the dxd I switched to Requip & Azilect.
my husband takes Requip as well. He started taking that a several years ago for restless leg syndrome and that helped him with that. It's the Carbidopa/Levedopa that he started taking in 09 that I'm really worried about.. Everyone that has answered my question, has had good results with it, and that is wonderful. But my husband has gotten worse. Of all the adverse side effects listed for C/L, he has all but one. So I'm anxious to see the neurologist on Jan. 4
Check his diet. I have found that drinking Blue Moon beer puts me into nasty withdrawal symptoms. I drink a light pilsner beer with little to no effects. I would also be very careful about making sure he takes his Requip regularly and be careful to not miss a scheduled dose. The Requip XL is ungodly expensive but I think it meters out the dose fairly even. Good Luck!
He doesn't drink any alcohol at all anymore, hasn't for years. And he never misses his doses. I even carry some of all his meds in my purse for when we are away from home for a few hrs.
> The Requip XL is ungodly expensive
Just to put a number to this .... I usually don't look at the retail price of my meds. I'm more focused on getting better (my main thing is PD, which I'v had definite symptoms of for about 7 years, diagnosed almost 2 years ago).
My last pickup was a 39-day supply of Requip XL.
My price with company health/drug insurance: $50.
The list price: $596.
Gulp.
Without insurance, Requip XL would not be an option.
My major PD symptom is RLS (07 diagnosed PD, 2010 - RLS). If I'm in a situation where it's not possible to move - the RLS can be agonizing, eg., stent insertion into the heart (believe it). I'm allergic to Requip. I control RLS with C/L dopa. My Dr says I could have had RLS (latent ) all my life and, in fact, the PD meds brought RLS to the surface. "Put that in your pipe". I'm still pondering this.
I'm allergic to Sinemet, so I didn't have the good results that others had. Some of my symptoms responded to the drug but I was unable to walk without falling down, I had full body hives, and I had full body sensitivity...even inhaling hurt.
I'm taking Requip and I wear a transdermal Selegiline patch called Emsam. My side effects are more manageable now. It took a few years to find the drug cocktail that worked for me. I've tried a few other meds but the side effects ranged from unmanageable to debilitating. I'm debating letting the Requip go because the nausea is pretty bad. I have Zofran for the nausea but THAT has side effects of its own.
One of the things that I think is important to mention is that you said that you thought your husband should "get better" once he began his medications. I wholly agree that life should be enjoyable and have purpose...but getting "better" isn't an option. Life doesn't cease to exist with PD...but it IS redefined.
Sometimes the side effects make the disease look like a cake walk (in my opinion). Maybe it's the side effects of meds are part of the problem? I spent 2 years trying to find the right combination for me.
I think you are right. I know if he has PD, he isn't going to get "better". But I think he is on the wrong meds.
Some of the side effects of PD meds is PD symptoms. Discuss with your Dr. what side effects you can have while taking Carbidopa/Levedopa and would it be possible that your husband has some of them...I did and changing meds really helped me.
Ref: "changing meds really helped me". Please name the meds that you replaced the C/L dopa with after you stopped the latter.
Sorry, guess I wrote my meds incorrectly. I started on Mirapex, switched to Requip, switched to Sinemet, then 3.5 years later to Carbidopa/Levedopa. Finally, 10 months ago, to my currect meds: Stalevo (100mg) 4 times a day and Carb/Levo once a day.
I had the side effects until switching to Carbidopa/Levedopa.
I have looked at the side effects and he has everyone of them except diarrhea & vomiting.
I had symptoms of PD since May 5, 2003, and was diagnosed on Sept. 27, 2005. I started on Merapex and had terrible side effects. Azilect was not FDA approved yet, paid $800.00 per month for it, but it did stop PD from progressing. Was off Azilect 3 times due to finances from 1 week to 3 weeks. Had terrible side effects after 3 weeks off and than starting again. Stopped taking Azilect, started on c/l dopa and gradually went up to 15 pills per day; and it gave me severe dyskonisias. Started walking 2 to 4 miles daily and went down to taking 4 pills daily. On 4 pills daily for the last 6 years, now getting a slight tremor. Not sure where to go next...
I think exercise is best thing you can do. My husband has had foot surgery on his left foot 5 times and he has special shoes, but it is very painful for him to walk very far, but he does some. He does have a stationary bike and uses that regularly. He is not very motivated, so I am the motivater, lol (nagger). He gets tired easily, but always seems to feel better after exercise. He's doing physical therapy now & has his neurologist appt. next week.
I gradually was able to move my very rigid left ankle after starting C/L. My symptoms got worse because after surgeries (minor--2 torn meniscuses, ovarectomy and an emergency hernia, OK not so minor) and other injuries requiring PT (torn rotator cuff and left anterior something in hip requiring steroid shot with Xray--ouch). Every time I needed anesthesia, PD advanced. Worst is inflammation I got during prep for a colonoscopy. I switched to Stalevo and pains got worse, so switched back to C/L. I do know one person in my PD exercise class who was allergic to C/L. She is now able to take one pill a day!
Maybe they will switch his meds. I just know he can't go on like this. He goes to the VA, so it's not easy to get an appointment.
I was diagnosed with PD in Feb. 2008 but had symptoms at least 2 years before.
I was seeing a local neurologist who insisted that I did not have PD. I then went to a neurologist who is a Parkinsons's specialist. He started me on Carbo/levadopa and I had immediate improvement. I am now on C/D, Requip XL and azilect. I am very pleased with the results.
Do you mind if I ask what your symptoms were? As far as I know,John didn't have any until after he had shoulder replacements (in both shoulders). While his right arm was still in bandages, he got a very slight tremor. He had been in pain for sometime with his shoulders and his left foot as well ( 5 surgeries on that to try and repair damage one dr. did) So it is hard to tell what his symptoms might have been. Any help with that so I can ask him and I can think back for something I might have missed. Thanks
Keep in mind that there are many manufacturers of C/L-dopa. Some people are allergic to the yellow dye and some are allergic to the fillers used. I changed to one made by Teva and my stomach aches went away.
I was diagnosed in July of 2011 and began carbidopa/levodopa 1/2 tab 3x/day. By Nov. I was at 1 1/2 tabs 4x/day. I had a seizure like episode the beginning of Dec. The medication was reduced to 3x/day. This past weekend I had my 2nd seizure and ended up in the ER. I have just read that a severe reaction to the medication is seizure. I've never had a seizure before this. Calling my PD dr. tomorrow as I'm quite scared, not knowing when this will happen again.
This sounds like something he went through. Right after he started taking carbidopa/Levedopa, we had to call an ambulance for him. He didn't know what was happening, but said he thought he was dying. All tests came back good and was sent home. We put him in a private hosp. where they regulated his meds & watched him. They lowered his dosage and came home in two weeks. But he kept loosing weight and was paranoid about everything. Then we moved to be near our kids, and went to a different VA. The Neurologist raised his dosage from 1-3x a day to 1 1/2 3x a day plus 1 C/L time released at bed time. He went to the hospital again. Then he raised the dosage yet again to 2-3x a day plus the nightime. And he is a mess. Drs. appt tomorrow.
And I don't blame you for being scared, this is terrifying.
whei was first diagnosed 4yrs ago i was give n mirapex &thought i was dying then on to sinamet nearly asbad now i take madopar &requip not too bad now but i didnt feel ill at all till i started taking pd meds
Has anyone with PD changed medication, when the initial one was not working? 
