At first it was antidiabetic, than for liver protection.. now might it be...??

[dadcor]

parkinsonsnewstoday.com/201...

[Bridielena]

Dadcor

I had 7months Trial, I paid, with Exenatide Injections. No visible change. Now ending 2 month lay-off. No worse No better. No idea of what my symptoms would have been had I not started my personal trial. I would like to go back on the injections and on 1/8 shall see my Neurologist for the prescription. 7 months probably not long enough....I reckon.

One drawback.....loss of weight.....huge amounts...look like a skeleton. No interest in food whatsoever. This time...if I’m back on....the diet will be severely adhered to.

HGE

[Kia17 in reply to Bridielena]

Bridielena

Please can you let us know about your personal experience with Exenatide?

Do people need a prescription for getting that? Are you diabetic as well? Any history of metabolic syndrome or insulin resistance?

Many thanks in advance

Kia

[Bridielena in reply to Kia17]

Kia 17 please look at my response below to Astra 7. I dont know what else I can add but to sum it up I believe Exenatide is worth continuing in a personal Trial.

[Astra7 in reply to Bridielena]

Thanks for info. Difficult to know how you would be without, but were your symptoms increasing pre trial?

[Bridielena in reply to Astra7]

Oh gosh, symptoms were 3/4 hrs ‘on’ on Madopar. 7 months on Exenatide, 2 months now, off Exenatide, with some days going 5 hrs before next meds .

However now I’m struggling having Madopar 3 hourly. Why ?

Also very weak inbetween doses. Low BP. Falls more frequent.

I added, over the past 3 weeks only:

B12 B3 B1 Magnesium.

Also have Dyskenesia and Dystonia but Symmetrel really helps the Dyskenesia and Magnesium helps the Dystonia. Not sure what role the B’s have.

I definitely want to go back onto Exenatide and see my Neurologist 1/8.

7 months trialling , I don’t believe, is long enough to make all the difference....but what do I know.

I don’t have Diabetes for which Exenatide is used for, but, as reports in the Lancet were positive, my Neurologist was very happy to prescribe it.

Not on our Australian PBS list of subsidised prescriptions for Exenatide so I had to purchase it for full price. Very doable as only $130/140 month for 4 injections. ( depending on what Pharmacist is on call) A nurse comes once a week to administer it as I’m unable to . Dyskenesia definitely controls that ability..

I’m really tired today so thinking about my life over the past 9 months is a little haphazard. Hope it makes a bit of sense.

Not a miracle drug ...yet!

[Kia17 in reply to Bridielena]

Many thanks for sharing your experiences and thoughts.

[dadcor in reply to Bridielena]

"No worse. No better.." may mean something, especially "No worse". What doses have you used..?

[Bridielena in reply to dadcor]

Dadcor I think I meant I’m at home living a reasonably ok life. After 13 years I expected to be in a facility by now. I’m taking a cocktail of drugs .

Which ones are helping or not ????

Should I drop the lot excepting the Parkinsons ( Madopar , Sifrol, Symmetrel,) and just go with the Exenatide. I’ve taken advice from this forum haphazedly I fear, and not thought it through wiith clarity.

Before Exenatide starting to deteriorate, after Exenatide, for a good 6 weeks, improved to where I was having up to 5 hours ‘on’ but now after adding B 1, 3, 12 and Magnesium deteriorating again....,3/4 hours ‘on’

You will have to talk to your Neurologist , mine very supportive and if it’s available I can try it. I haven’t had the intestinal fortitude to tell him about the extra little helpers.

Other mates Neurologists not supportive because not proven for PD.

The 2 months off the Exenatide was to evaluate my symptoms. I haven’t seen him yet. Have appt. 1/8.

Sorry ...,,I’m not thinking clearly at the moment ....very tired and symptoms varied over the past 9 months. All I want now is to go back on the injections ....from the Gila Monster Lizard bless his ugly and frightening appearance.

[dadcor in reply to Bridielena]

Thanks Bridielena.., some worsening from high dose B1 could be expected, but this is not a bad sign.. Just the opposite, your system is responding.. You should definitely consult Dr C on that... The right B1 dose may bring some "pretty unexpectedly good" benefits to you... as it did with me and many others..

[Bridielena in reply to dadcor]

Oh ok. At least you understand what I was trying to say.

Yes Vit. B1 probably is the culprit .

Will get in touch with Dr C.

For some reason I cannot send him required photos as suddenly my computer won’t comply but correspondence will.

HGE