[HarryO]

Greetings. Am new here. Don't know where to start so here goes. Two questions. One, I'm a year out from PD diagnosis. Began with two pills/day, sinemet, 25-100, but recently am getting quite a bit stiffer in my legs. Neurologist about three weeks ago suggested upping frequency to three pills/day which I've been doing for about a week now. Am getting nervous in that I can't get around well. Am I not being patient enough or do I need to be pressing my doctor to increase the frequency.

Second, over this past year, for arthritic and back issues, I have been prescribed a purepac prednisone package, beginning with 24mg day 1 and gradually tapering down for 6 days if my math is right. It worked wonders for all my ails including my PD. Has anyone else had this experience?

[lurkingforacure]

Originally Posted by HarryO

Greetings. Am new here. Don't know where to start so here goes. Two questions. One, I'm a year out from PD diagnosis. Began with two pills/day, sinemet, 25-100, but recently am getting quite a bit stiffer in my legs. Neurologist about three weeks ago suggested upping frequency to three pills/day which I've been doing for about a week now. Am getting nervous in that I can't get around well. Am I not being patient enough or do I need to be pressing my doctor to increase the frequency.

Second, over this past year, for arthritic and back issues, I have been prescribed a purepac prednisone package, beginning with 24mg day 1 and gradually tapering down for 6 days if my math is right. It worked wonders for all my ails including my PD. Has anyone else had this experience?

Welcome to the club no one wants to be in I'll hazard a guess on the prednisone issue and say that it is anti-inflammatory and helps combat whatever inflammatory processes are going on in the brain of PWP.

I'm no doc, just giving my .02, for whatever it's worth.

[aquario]

I was put on pred for a 10 day stint because of intestinal issues. Felt great. Most of my pd symptoms faded into the background. Then I was told to discontinue the prednisone without tapering. Pow! I felt awful and like my pd had progressed by 5 years. Gradually after a couple of weeks, I returned to where I'd been before the incident. Wished I could have stayed on it longer, but not at the price I had to pay. If you are tapering off, it shouldn't be a problem.

Jon

[HarryM]

Originally Posted by aquario

I was put on pred for a 10 day stint because of intestinal issues. Felt great. Most of my pd symptoms faded into the background. Then I was told to discontinue the prednisone without tapering. Pow! I felt awful and like my pd had progressed by 5 years. Gradually after a couple of weeks, I returned to where I'd been before the incident. Wished I could have stayed on it longer, but not at the price I had to pay. If you are tapering off, it shouldn't be a problem.

Jon

Just wanted to forward my experience with Prednisone. Dr. prescribed it to combat a serious outbreak of Psoriasis as follows;

Take six 5 mgs of APO-Prednisone in am daily for 7 days.
Take four 5 mgs daily for 4 days
Take two 5 mgs daily for 3 days.

Within 6 hrs of 1st dose, I could feel an improvement generally in my well being. Between 24-30 hrs PD symptoms had diminished noticeably. At approx. 48 hrs I FELT NORMAL and estimate 90% reduction in symptoms. Only a minor twitch in my left hand remained. Gone was the slow walk, weakness, bent neck, & slow speech. My strength and attitude returned to normal and I was able to go out on my ATV and clear a 1/2 mile of bush trails that I started a yr or so ago.

Even as the doseage decreased to the 4, 5mg, pills a day the positive effects continued till the 2nd day of two pills a day and thats when the symptoms slowly started to return.

Only negative side effect was increased blood sugar levels - pretty high - but that can be treated. And for as good as I felt, I"ll take the diabetic risk. I've had diabetes for 20 yrs.

I'm going to the Dr. today to discuss the possibility of treatment with Prednisone.

I emailed my experience to every PD researcher I could find on the net.

I hope this info will be of interest to you.

HM

[HarryO]

Originally Posted by HarryM

Just wanted to forward my experience with Prednisone. Dr. prescribed it to combat a serious outbreak of Psoriasis as follows;

Take six 5 mgs of APO-Prednisone in am daily for 7 days.
Take four 5 mgs daily for 4 days
Take two 5 mgs daily for 3 days.

Within 6 hrs of 1st dose, I could feel an improvement generally in my well being. Between 24-30 hrs PD symptoms had diminished noticeably. At approx. 48 hrs I FELT NORMAL and estimate 90% reduction in symptoms. Only a minor twitch in my left hand remained. Gone was the slow walk, weakness, bent neck, & slow speech. My strength and attitude returned to normal and I was able to go out on my ATV and clear a 1/2 mile of bush trails that I started a yr or so ago.

HM

More than interested in what your doc had to say.


Even as the doseage decreased to the 4, 5mg, pills a day the positive effects continued till the 2nd day of two pills a day and thats when the symptoms slowly started to return.

Only negative side effect was increased blood sugar levels - pretty high - but that can be treated. And for as good as I felt, I"ll take the diabetic risk. I've had diabetes for 20 yrs.

I'm going to the Dr. today to discuss the possibility of treatment with Prednisone.

I emailed my experience to every PD researcher I could find on the net.

I hope this info will be of interest to you.

HM

Am very interested in what your doctor has to say and, very much appreciate your reply. Turns out too, I feel the same way about the trade-off between prednisone vs side effects vs quality of life. HO

[HarryM]

Originally Posted by HarryO

Am very interested in what your doctor has to say and, very much appreciate your reply. Turns out too, I feel the same way about the trade-off between prednisone vs side effects vs quality of life. HO

Doc couldnt Rx more on a steady basis as that is what is needed. Mostly used as a treatment for animals. Many side effects but nothing compared with what we suffer with PD. Type prednisone & Parkinson's on the net 7 you'll see a post by a woman whose husband had exactly the results that I had. Must be SOMETHING of value with this info.

[HarryO]

Originally Posted by HarryM

Doc couldnt Rx more on a steady basis as that is what is needed. Mostly used as a treatment for animals. Many side effects but nothing compared with what we suffer with PD. Type prednisone & Parkinson's on the net 7 you'll see a post by a woman whose husband had exactly the results that I had. Must be SOMETHING of value with this info.

I'm on it. Had scoured the net before posting here so have seen the steroid effect experienced by others. In this country, doctors will generally only prescribe prednisone every 3mos, be it oral or injected. There are exceptions of course, where the side effects are justified b/c of the nature of the issue. As such, it seems that those WPD who have had prednisone prescribed for other than PD, outside of the 3 mo window, seem to find that around 15mg/day is the difference between being effective, making a difference, or not.

Also, they seem to say too, that when they get of prednisone, their PD issues seem more pronounced. Again, comments I've read.

In my case, I could easily go to a doctor here and get a boost every 3 mos. Perhaps you too. But don't think the three days or so "awakenings" is what we're striving for.

Any feedback from your inquiries from researchers??

I go to my guy 10/7 and will ask him again.

H'O

[Jomar]

There are many long term effects with prednisone, please read fully up on it before seeking long term use of it.

https://www.google.com/search?q=pred...vid=1620996426

[HarryO]

Originally Posted by Jo*mar

There are many long term effects with prednisone, please read fully up on it before seeking long term use of prednisone.

Hi, Wasn't trying to be cavalier here as to the prednisone b/c I am aware of the many issues it brings. Kinda was "throwing it out there" for discussion in that there are long term effects of Parkinsons as well. Thanks for your imput and the information. HO

[dilmar]

Harryo
Interesting observation about prednisone treatment. This article from 18months ago shows some research in this area but until your post I wasnt aware that it was an area of interest, though it seems very minimal interest.

"Scientists at Swansea University and Karolinska Institutet in Stockholm have identified two steroid-type molecules that play an important role in the survival and production of nerve cells in the brain.

The discovery, published in the journal Nature Chemical Biology, could help in the development of new treatments for neurological diseases such as Parkinson's disease."

http://www.bbsrc.ac.uk/news/health/2...arkinsons.aspx

I know we have effects from PD and its drug treatment but disagree that predisone side effects are "nothing compared with what we suffer with PD".

I am very wary of prednisone use except as short term specific treatment. I have seen the effects of long term use in a relation. She is now a diabetic and has had dramatic personality changes and hospital admissions for adrenal crisis, her adrenal gland no longer functions because of her continued use of steroids.