New comer


#1

Hi. I was diagnosed in January and put on Azilect and it seems to be working well. Except for stiffness not much in symptoms as long as life is running smoothly. Under pressure I can get a bit shaky. More inwardly than outwardly. I am 71 and have always been very active. Sports and gardening etc. I am keeping up as much exercise as I can as I know it really helps. Interested to know of anyone else on Azilect? Libby


#2
Hello and welcome, Libby!

I am 67 and have been on Azilect several years now, beginning as soon as it came on the market. It does not seem to affect my symptoms, but it supposedly slows the progress of PD. I take a small dose (0.5 mg. per day) and notice no side effects. Although I cannot be certain whether it is retarding the disease, I can say that after 16 years with PD I am still living my normal life, with only subtle symptoms that most people do not even observe. So I keep taking Azilect. Some patients do notice side effects, and some say their symptoms have been reduced. As is always the case with PD, it's different for everyone.

Best wishes to you.

#3
Thanks J of Grey Cottage for answering my query re Azilect. I know everyone is different but stories like yours make me feel better. Are you also on other meds beside Azilect. I am just taking the 1 mg dose but started on .5 mg for a couple of months to start with and have been on Azilect 3 months and see my neuro again in August for my second visit.

#4
Yes, I'm taking quite a lot of medication now. I started slowly; then as symptoms emerged over the years, my doctors added new drugs and increased dosages of old ones. My first med. was Mirapex (Pramipexole), which successfully eliminated my symptoms at first. Amantadine and Azilect were added to try to delay the disease. And about two years ago I began taking a small dose of Sinemet (Carbidopa/Levadopa). So I'm taking two for suppressing symptoms and two for a delaying effect. In addition, I take Ubiquinol (the effective portion of CoQ10), extra Vitamin C, and Domperidone. That last one is to counteract gastroparesis, which was apparently caused by the onset of PD.

As you can imagine, that's quite a handful of pills! But the results have been so good that I don't want to alter anything. I hope you are as fortunate as I have been.

#5
Hi Libby,
I have had symptoms for over two years and was finally dx'd in April. I was put on Azilect right away and, touch wood, it has been good for me so far. I have a slight speech problem and have to persuade my right arm to swing when walking. When tired I get a few hints of tremors to come but so far none apparent. I wish you luck. I am 67 going on 21.
Horace

#6
Thanks Horace.
Glad to hear Azilect is working for you as well. I'm travelling pretty well and know now to pace myself instead of my past crazy life where I didn't slow down even if i was feeling tired. Like saying yes to golf when i was exhausted! At present on a wonderful caravan holiday in northern Western Australia and it is just great. Playing some lawn bowls when i feel like it and enjoying the sunshine.
Good luck
Libby

#7
Hi Libby
I’m 62, dx a year though with symptoms long before. I started on Pramipexole (now at 1.25mg 3x a day), and added Azilect a month or so back (1mg a day) - for its supposed neuroprotectivity. Actually, I also feel generally more stable on it, and certainly am sleeping better, though it hasn’t touched the tremor or improved the typing. Only downside - a numb knuckle. I hope I can still be as active as you in nine years’ time.
Best
Semele

#8
Thanks Semele. I hope you continue to do well. Just returned from a lovely holiday so feeling good.

Libby

#9

Been taking Azilect 1mg since diagnosis 7 weeks ago , not doing much for my tremors either  but as time is going on the stiffness is improving  not sure if i am correct in this but i did read some where that  it can take about  8 weeks to feel the full effects  of azilect  but i certainly feel better no painful shoulder and stiffness , did have the odd side effect  main one being headaches for a few days and a couple of weird dreams but everyone is different no two people will experience the same if any side effects .


#10

Hi Shelley65.  Good luck with the Azilect.  I feel it has helped me and if it slows down Pd that will be a good thing.  I'm generally keeping up with most things but have taken the pressure off myself by only playing social golf.  Find I now need an afternoon nap if I get the opportunity.

i

 

 

.  


#11

Hi Libby

The good old afternoon nap  i  do find i tend to need  one most days but that may be due to  Azilect  wearing off on a evening   and tend to start struggling  with stiffness and rigidity which is not helping get a good nights sleep hoping the  consultant  will be able to add something else to them  to try help on a evening


#12

Hi Shelley

will be interested to hear how you get on when you see your consult.  I think as the year has gone by I've learnt to adapt with balance and stiffness etc.  not ready to jump into more meds as I'm coping pretty well.  I do get anxious at times when stressed.  If everything is going smoothly I am so much better.  Exercise really helps me too.  Good luck.


#13

Hi Libby

 

Well i go see him in November i have noticed  i am tripping and stumbling a bit more , but not actually falling as yet  luckily someone was with me to catch me as it were  , these things are sent to try us , will keep you updated Libby

Good luck to you also


#14

Hi shelley.  How did you get on with your consult in November?  Changed mine as after two visits six months apart I wasnt impressed with how much info I got from him, in fact he was very negative.  Parkinsons nurse who visited was much more helpful.  This second guy is much more positive and spent almost an hour chatting, plus did extra tests.am still using 1 mg of azilect each morning.  I know i sometimes feel i might tip fwd but so far so good.  Dont like busy train stations or busy shopping centres too much!

all the best. 


#15

Hi Libby

i went to see him in November , he gave me a choice of a dopamine agonist or Levodopa , i asked which he recommended he said it was my choice but as far as my options went he said a dopamine agonist wont work as well as levodopa and i would probably need levodopa in about 12 months time anyway as far as dyskenisas were concerned he said if and when i suffered with them there were options available such has DBS  , i wanted as much normality back in my life as i could possibly get so neuro said Levodopa was my best option so i opted for Levodopa , i have noticed a big difference but it has not been without side effects i have suffered with nausea and vomiting  and was at the point of giving up on the levopdopa but my gp suggested  a course of cyclizine  i had already tried domperidone   they did nothing for me , gp said if the cyclizine did not work i would have to go back to the neuro for a drugs change but thankfully things have settled down now and the cyclizine are working so i am glad i did not give up on the levodopa  , i still take my Azilect as well

i have not seen my pd nurse yet but thankfully i have a good gp who is very understanding

hope everything is going well for you ? do you still only take Azilect ?

sorry to hear you had so many problems with your neuro mine is very good  he does take time to sit and explain things


#16

Hi shelly65 are you still on sinemet plus ! just being nosey


#17

yes gus ,  gp told me to cut the sinemet to  half dose to  give the cyclizine time to work , i have gradually worked back up and now back on full dose sinemet 3x125mg    , my mother also has pd  she  is on sinemet plus to she started on 62.5 x3  for 2 weeks then every two weeks she replaced a 62.5 for a 125mg ,  so it took her 6 weeks to get to full dose she never suffered any nausea , i think my neuro worked my dose up to quickly  i was on 62.5mg , 3 times a day for a week then straight onto 125mg x3  to much to soon for me , but  so far so good  , i am glad i persevered with them .

 


#18

they are the oldest & best out there,have a good one!


#19

Merry christmas Gus


#20

merry christmas shelly65