Should I take the meds?


#1

I was diagnosed with PD in 2016, at that time my only symptom really was a slight tremor in my left hand, at the end of our meeting the neurologist gave me a prescription for Levo dopamine (no discussion of any other treatments or medication) I think I was actually still in a bit of shock so didn’t ask him any sensible questions at the time but I did ask what effect Levo dopamine would have on my Parkinson’s, he was very clear on the negative aspects such as hypersexuality, irrational gambling and secretive spending of money but was less so on any possible benefits and could not say what if any effect it would have on slowing or masking future symptoms. As I am the full-time carer for my partner I didn’t think arrivng home with a prescription as above would be very popular, I’ve looked at the pros and cons of Parkinson’s medication in a bit more detail since then and to be honest I wonder if the negatives outweigh the positive aspects of it, however I am now starting to have issues with My Left Foot hanging down when I walk which has tripped me up a couple of times so am wondering again if I would gain any benefit from the medication, and if I were to go down there medication path which medication should I ask for,
I’d like to be able to compile a list of pros and cons of PD medication but getting impartial advice seems very difficult, one of my local practice GP’s says do not take the medication but another one says yes start taking it immediately.
has anybody any advice on yay or nay to medication, if you do take your meds have you noticed any positive effect pr conversely anything negative?
Paul
Sorry for any typos, sent using my mobile


#2

I would say you are very silly not to take your meds .

These will help you if I did not take my meds I would not be able to do anything .
So it’s a case of for me anyway having a life or not having a life.
It actually makes me quite angry this topic.
Why would someone want to suffer .?


#3

Hi Paul, the taking of medication is an emotive subject and there are different schools of thought. One being, delaying medication for as long as possible. This applies especially to younger PD diagnosed. Making sure diet and exercise are a priority.
The 2nd, take medication offered to help with specific issues. Your right to ask questions and investigate the benefits /negatives. But if medication helps your walking and other symptoms why wouldnt you? Taking meds is your choice and how and when you take them is in your control.
There is a point where you will need the meds and as long as you take them the right way it will help you enormously.


#4

Hi Paul, I’ve also wondered a lot about this. I was diagnosed a year ago and my symptoms sound similar to yours. I have a left hand and leg tremor and slight muscle problems on the left side. The neurologist I saw prescribed Rasagiline, which, I believe, stops the body destroying dopamine. It seems worrying to me that different neurologists prescribe different things for similar symptoms.

I can’t say the rasagiline has had much effect on the symptoms but reading about other drugs I would like to stay free of other medication as long as I can. I’m due to make another appointment with the neurologist soon but will be adamant that I’m coping fine without at present.

There is a good summary of the different medications of this website which is worth reading.

Also, have you looked at exercise programmes such as PD Warrior. I’m doing a local course based on this and finding it very helpful.

Clare


#5

Hi Paul
I was diagnosed last November with my symptoms being stiff fingers and toes on my left side. I was prescribed rasagiline in February and after only 2 weeks of taking it I suffered with a sore blistered tongue. So I had to stop. After much discussion with my PD nurse she suggested that as I have no problems coping with work and my every day life that I should hang fire with medication for now. So that’s what I’m doing.

Good luck with whatever you decide.

Nicola.


#6

Thank you to everyone for your replies, but none of you have actually said taking the medication has lead to any improvement in your symptoms. As I said in my initial post I am the full time carer for my wife and my big concern is if I do start taking the medication I’ll become “someone else”, there are plenty of Unfortunate Souls on this forum who have suffered emotionally and financially because of PD meds. This worries me so much I have been to see a solicitor and drafted a power of attorney document, I’ve also discussed with my eldest daughter that if I do start taking the meds we will have a discussion about this beforehand, I don’t want trying to alleviate my symptoms to cause distress to my wife and family which is why I’ve held off taking the meds, if anyone else is going to reply to this thread I would like to know if taking the medication has actually improved your physical/emotional symptoms or as importantly, not!
Thanks to all.
Paul


#7

Hi Paul, It really depends on a number of factors as to whether it is best to take the meds when first diagnosed. I was diagnosed in 2010, and was working a very demanding job with travel and I had to type and write in order to do my job. I also was having difficulty writing, typing, my right leg dragged, I was lethargic with no energy, and my right side was rigid and I had pain. I was 53 years of age and my doctor did not explain the side effects of taking the medicine. Therefore, I took the medication but knowing now what I know I would do it differently.

I am now 61, I was taking 9 carbidopa levodopa and a natural form of dopamine (Mucuna Pruiens), as of February but in three months have reduced medication to 4 carbidopa levodopa and 4 Mucuna Pruiens. I take the prescription pill and mucuna together every 3 hours starting at 7:15 a.m. My last pill and supplement is at 4:15 p.m.

I am now retired since 2014. I attribute the decrease in medication to having read two books in which I am doing the exercises. They are: Fighting Parkinson’s and Winning, by Howard Shifke and Goodbye Parkinson’s, Hello Life, by David Brinn. I also make homemade Kombucha and yogurt to decrease candida in my gut. I also walk 45 minutes every day, rain or shine. I’m feeling very good since I start this routine in February. I am still driving, taking a drawing class, Tai Chi class and have a rather full life. Also, I found this website useful-http://www.outthinkingparkinsons.com/articles/vagus-nerve#.Wt_SqOOjJro.email. I saw my neurologist in May and she was rather amazed about my improvement and told me to keep up what I was doing.

I am very hopeful of having further improvement and would encourage staying off or limiting medications as much as possible because of their side effects. However, I believe if you do so you need have an exercise routine, stay active, and do what makes you happy. I hope this is helpful and good luck and good health! Karol


#8

Hi @Butteredtoast,

I appreciate your concerns regarding your medication especially as you are the carer for your wife. You mentioned that you’ve already spoken to your GP, however, have you been in contact with your Parkinson’s nurse? If not, I would advise that you to speak to one as they have a large part to play understanding and managing your medication. If you contact our helpline department on 0808 800 0303, one of our advisers can arrange for a Parkinson’s nurse to call you within 24 hours.

We also have a section on our website dedicated to ‘Drug treatments’ that will be really useful to you so please take the time to have a look and feel free to raise any questions with one of our advisers.

I hope you find this information useful.

Best wishes,
Reah


#9

Hi,
I have just started low dose Madopar. I am only taking twice a day for a week before increasing to three times a day. As I rarely go out in the evenings and if I do I can cope with the symptoms I have, why can’t I continue on just twice a day?
I understand as things get worse I would need to increase, but while this is not the case it doesn’t make sense to me.
I asked neuro but he just said that’s how it’s prescribed.
Your comments would be gratefully received


#10

If you are tripping because of your Parkinson’s, then I think you should consider going on a low dose of levodopa or other medicine recommended by your doctor. You are running the risk of injuring yourself seriously by falling.

I was diagnosed last year, but I’d had a fall in 2014, probably caused by Parkinson’s, which badly damaged my left foot. I still only have mild Parkinson’s but my movement is also affected by the damage to my foot, so I have difficulty in walking more typical of someone in a more advanced stage of the disease.

I am on a low dose of madopar (levodopa). I have absolutely no side effects from it. I also do Parkinson’s exercise classes which help a lot. I’ve found my neurologist and doctor very co-operative in allowing me to decide which dosage suits me best.


#11

Jane,

You say you do not suffer any side effects from your PD medication, but you don’t say if it gives you any benefits, has it for example improved your walking or mood?

Regards
Paul


#12

Hi. This is my first post so I hope I’m doing this right :slight_smile:.
I was diagnosed in June '17. I was started on Repinirole at increasing dosage until increasing discomfort in my stomach forced a change to trans dermal patches. All the while, my main symptom, left arm tremour, became slightly worse. My PD nurse, amazingly got an appointment with my neuro who then started me on increasing doses of Sinemet. I took this for 2 months before weaning myself off and, so far, no increase in tremour! I have to admit that after 1 week on low dose Sinemet my sense of smell improved and this has not diminished since stopping the meds!

Does this sound familiar to anyone?


#13

Yes, the madopar has had a big effect. On 62.5 , three times a day, most of my symptoms disappeared. It got rid of my constipation, shuffling walk and restless leg syndrome. I’d had difficulty turning and getting out of a chair, but with madopar these problems disappeared. It also cleared the ‘mental fog’. I still had a slight tremor in my left hand and sometimes experienced stiffness in my thigh muscles in the evenings, which made it difficult to sit comfortably, but otherwise I was fine.

My neurologist had prescribed the 62.5 dose with the plan that after a couple of weeks, when I’d got used to the drug, I would increase to 125, but I didn’t feel the need to increase the dose for several months. After six months on 62.5 I started getting a lot more stiffness in my muscles and a more marked tremor. I’ve recently increased the dosage to 125, after nearly 9 months on 62.5.


#14

Well all I can say is lucky you my PD is getting worse and drugs increasing.


#15

Hey Karol love your story. Have you had scans that Concur with your feeling of getting better?


#16

No, I haven’t. I have switched neurologists this past year from a doctor from Emory. He wanted me to do the scan but I was resistant because I have always felt your body can be healed. This neurologist never explained natural ways such as diet and exercise but kept suggesting new drugs. Let’s just say I was not a very good patient and stuck to taking just the minimum medication with mucuna.

Having said this, I know I am getting better, Two years ago, I laid around all day on the couch, couldn’t cut with a knife, was losing weight, and couldn’t drive. Yesterday, I drove 30 miles to the zoo with my grandson after making lunch. I have put on 20 lbs the past two months and chair meetings. I don’t need a test to know I am getting better. Parkinson’s will take your life if you let it. I simply refuse to let it! Take care


#17

This does not work for everyone I’m afraid.

If Only.???


#18

Hi butteredtoast (Love he neame by the way)

I was diagnosed in January this year. My problem was a alight tremor in my left hand and some stiffness and weakness on the left side. The neurologist said I had probably had PD for 5 or 7 years He prescribed Sinemet plus and I started taking it straight away. I now have no tremor in my left hand except very occasionally, and have had no obvious side effects. I have had chronic arthritis for many years and feel that my symptoms are mostly down to that.

On next seeing the neurologist 2 months later he was very pleased with my response, and added Rasagaline to my prescription and again i have noticed no perceptible adverse effects. To be truthful I have noticed no effects at all but am willing to take the expert’s advice. He doesn’t expect to see me for a further six months unless I have a problem,

Hope you find this of some use.

Best wishes

Knine


#19

Thank you to everyone who replied to my question “should I take the meds or not?”. Of the eight people who actually describe what impact their medication had I would say the only person with any positive impact from the medication is knine, the other people seem to have indifferent at best benefits, but there seems to have been no mention of any review of your medication to see if changing it would help improve your symptoms? There also seems to be quite a variety of medications taken taken from the eight replies, I accept all of our bodies are different but based on my personal experience of the Parkinson’s assessment I wonder which criteria the medical team use when deciding which medication to allocate an individual, when/if I do eventually decide to take the meds I think I will be asking for the same treatment as K-nine to be one of the options on the table,
Again thank you to everyone who has answered my question and I think the matter is now closed for me,

Final thought: Am I the only one who thinks a forum questionnaire of members perhaps in the form of a simple Matrix asking everyone which drugs they are on and how they feel the Parkinson’s is progressing would be a good database of information for everyone? Might we find K-nine is not too unique?


#20

Hi Butteredtoast

Glad you found my reply of use. One thing I would add is that the relationship between the patient and the doctor is so important. I am very happy with my consultant neurologist who seems to know his way about the various medications, and so I was happy to take his advice. I do not have a team of people advising me.

Good luck with whatever you decide.
Knine