Jump to content


E-Newsletter Signup Like us on Facebook Sign Up For Our e-Newsletter
Photo

How long after diagnosis...


  • Please log in to reply
6 replies to this topic

#1 LaurenNY

LaurenNY

    Member

  • Members
  • PipPip
  • 20 posts
  • LocationWestern, NY

Posted 19 April 2013 - 08:29 AM

How long after diagnosis does it take to get the right prescription combo to help with symptoms?

I was unofficially DXed about 13 months ago and then officially DXed about 9 months ago. I started on Selegeline for a little over 6 months, which did not help my symptoms. I was then put on Requip XL 2mg, then went up to and now am on 6 mg. I still don't think the 6mg is working (I have to give it another week before calling my doctor). Is this normal or should I start looking for another doctor?

My only major symptom is stiffness and that only really effects me when exercising.

My DH thinks I should change doctors, but I think this is the normal process (frustrating but normal).

#2 Beau's Mom

Beau's Mom

    Advanced Member

  • Members
  • PipPipPip
  • 1,834 posts
  • LocationSeattle, WA

Posted 19 April 2013 - 10:54 AM

Hi Lauren,

Are you seeing a Movement Disorders Specialist (MDS) as opposed to a regular neurologist? That might make a difference. I guess I was fortunate in having negative reactions to every agonist they tried, so within two months of diagnosis, I knew I could only tolerate Sinemet.

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

 

First symptoms: right-hand tremor, constipation and restless arms 1978 (age 25). Depression and anxiety (non-motor symptoms) began in 1989 and worsened through the years. Last inpatient episode June 2013.

Diagnosed December, 2010 by a regular neurologist (age 57). After negative reactions to Requip, Mirapex and selegiline began Sinemet 25/100 3x/day. First MDS visit in Houston in February of 2011 was inconclusive. Second MDS visit at Baylor Fort Worth in May/June 2011 diagnosis changed to Parkinsonism, Sinemet stopped. Third MDS visit in August 2011 in WA State: received a confirmed diagnosis of idiopathic PD which had started on the right side and had now crossed to the left side as well. Restarted on Sinemet 25/100 4x/day. A short trial of Amantadine caused audio hallucinations in September 2011.

 

Current medications at age 62: Sinemet 25/100 ODT every 2.5 hours while awake (7/day). One Sinemet 25/100 CR between midnight and 4 AM. Trazodone 200 mg at bedtime, Fluvoxamine 300 mg at bedtime. Clonazepam 0.5 mg morning and afternoon, 1 mg at bedtime. Vit D3 2x/day, Calcium Carbonate Susp. 5 cc daily, Baclofen 10 mg 3x/day, Flonase two sprays 2x/day, Calcitonin-Salmon nasal spray once daily (for osteoporosis). Gel eye drops as needed throughout the day, Restasis Eye drops 2x/day, Nighttime eye ointment at bedtime. 02 2L per nasal cannula while asleep. Walker, electric wheelchair, moist and soft or pureed foods and 115 caregiver hours/month keep me sane.

 

All of the above subject to change based on progression, stress level, and dyskinesia. Whew! I'm glad I finally wrote that all out.


#3 Delta

Delta

    Advanced Member

  • Members
  • PipPipPip
  • 280 posts
  • LocationIndiana

Posted 19 April 2013 - 10:55 AM

I was diagnosed in Jan 2011. I see my MDS every 6 months. My medicines have been changed on each of my 5 office visits. I finally feel now that my medicine shcedule is almost perfect. I started with just mirapex, then sinemet was added, and recently sinemet cr was added. The hard part is not only do the meds need to be fine tuned but i seem to get new sypmtoms as time moves on. So my expectation is that my medicines will be changed or adjusted on every visit.

The phrase I often hear associated with PD medicine is go slow and start low. It really appears to be more art that science.

Delta

Edited by Delta, 19 April 2013 - 02:43 PM.


#4 MarciaJ

MarciaJ

    Advanced Member

  • Members
  • PipPipPip
  • 1,259 posts
  • LocationEarth

Posted 19 April 2013 - 12:10 PM

I was diagnosed in 2006 but waited till 2011 for meds. The first neuro I saw diagnosed me and we moved shortly after to another state. So I decided to wait to find a neuro till I needed meds. He slowly increased meds one at a time. Only had to change one. It's not perfect but I can deal with it. Im on a pretty low dose. Benztropine 2mg one tablet twice daily. Also Carbidopa/Levodopa 25-100mg cr two tablets three times a day.

Mj

<3.<3.<3.
 

I had treatment for cancer in 2003-2004.

 

Symptoms started shortly before Diagnosed 2006. At Age 54 .

 

Waited 5 years before it was necessary to start meds. 

Meds-Carbidopa/levodopa 25-100mg cr tabs four times daily
Benztropine 2mg tabs twice daily
B12 tab for memory loss, one daily

 


#5 woodbee

woodbee

    Advanced Member

  • Members
  • PipPipPip
  • 549 posts

Posted 19 April 2013 - 01:08 PM

Lauren,

I think it's pretty standard practice for doctors to move up the ladder with medications, slowly and starting off with ones that may help to prolong the start of carbidopa levadopa, especially since your symtoms are mild yet. It can take a long time to find what works best. It's in your interest to go slow paying attention to side effects especially. I had a reular neurologist for a while, then moved and had a MDS. they both used the sme approach. It took two years for me to muddle thru the various meds until I got settled on a routine that worked. However. the drugs do need fine tuning as your symptoms change ove the months and years.

#6 LaurenNY

LaurenNY

    Member

  • Members
  • PipPip
  • 20 posts
  • LocationWestern, NY

Posted 19 April 2013 - 02:29 PM

Thanks everyone for the responses. From how I interrupt everyone's response, it will take time to find the right medicine/dosage for me. I know I shouldn't complain because my symptoms are mild, except for when I'm exercising. Since I love working out, not being able to exercise to what I know I'm capable of is frustrating and discouraging.

Hi Lauren,

Are you seeing a Movement Disorders Specialist (MDS) as opposed to a regular neurologist? That might make a difference. I guess I was fortunate in having negative reactions to every agonist they tried, so within two months of diagnosis, I knew I could only tolerate Sinemet.


I'm currently seeing a regular neurologist. He is the one that made the unofficial DX and sent me to MDS. After she confirmed the DX she sent me back to the regular neurologist.

#7 Golden01

Golden01

    Advanced Member

  • Members
  • PipPipPip
  • 734 posts

Posted 19 April 2013 - 09:18 PM

I think finding a MDS to follow you can really make a difference in how well medications and other treatments are managed. You might think about a PT consult with someone who has trained specifically to work with PD. My husband has been through "BIG" training and had specialized PT therapy for PD. We can tell the difference in his symptoms with the PD exercises (like PWR! Moves). His MDS has been very good at getting our insurance company to cover the specialized PT. Here's a link to one program in Arizona:http://www.pwr4life.org/. They have trained other clinicians throughout the country. In our city, there are also low cost ($5 per session) classes for people with PD like Tai Chi, PWR! Moves, dancing, and more. My husband does Tai Chi and PWR! Moves each week.

Good luck. I hope you will be back to the exercise that you want to do very soon! Keep us posted.

Edited by Golden01, 19 April 2013 - 09:18 PM.

Husband diagnosed in 2005-Medicines: Azilect, Artane, and Amantadine, Levodopa (1X/Day); Sister and Best Friend from Childhood also have PD





0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users