Neupro Patch

[pamndorr]

I am tired of drug changes and I am tired of doctors that don't hear what you are saying and I hate this disease.

Today I went to the sleep doctor..told her the Pramipexole was making me a crazy woman and I needed off of it. My primary had already swithched me from the Mirapex ER..that the sleep doctor had started me on... to the regular Pramipexole. The Mirapex ER was not a good drug for me at all. It was the second time I had tried it and both times I thought I was going nuts.

So she changed my drugs...now I am supposed to try this Neupro Patch. Tomorrow I am supposed to stop the Pramipexole and go right to the patch. Has anybody had any experience with this patch? I am thinking it is a fairly new drug but I might be wrong.

This disease is getting real old....and it is making me feel real old....and I don't even know who I am half the time anymore. I hope this new drug does the trick and maybe I can have my life back....I will let you know how it goes.

Any feedback about the Neupro would be greatly appreciated!! Thanks

[rthom]

pamndorr

Sorry it's going so hard for you right now. I get it about feeling old with this thing. Yes there is alot of new buzz bout neupro and if I remember correctly it's a drug used before--but changed a bit and put in patch form and re-issued (hope I have the right drug ),Anyway there has been quite a bit of information out on it lately, so if you do a search about it, I'm sure you will find alot of information that way as well.
I did not do well at all on mirapex as well, so you have some company there. Hope things go well soon.

[EeFall]

I had the patch for awhile and I did go from Mirapex to it. It worked great as far as getting a lot of sleep but I stopped using it because it was causing personality changes in me (my wife more or less insisted that I quit it). I saved some though because it really seems to work. Many people must not have side effects like me though - hope it works for you!

[ViewsAskew]

It really can be frustrating to try and find a drug that works, can't it?

The patch was around about 5 or 6 years ago, but they had problems with the adhesive. It's been in use in Europe for about 3-4 years, I think, and just re-approved in the US in the summer of 2012.

Many people really like it. Augmentation is supposed to be lower, but I don't know they've confirmed it. It is different that pramipexole (not completely, but some) and may have a different side effect profile for you. The bad part? You won't know until you try .

[pamndorr]

I do not think this drug is working for me. The first day I felt pretty good. A bit sick to my stomach but that isn't new...most of these drugs me sick. I get through it. I slept for a little over 4 hours that first night too. I did have a bad sharp pain in my back on the side I put the patch on but that seemed to go away after I changed patches the next day.
Last night was a different story. I was up and couldn't sit down and relax at all in the evening. My legs were so swollen from the knees down that it hurt to get up and move around. I went to bed and was up 2 hours later....RLS out of control. Been up all night since then. Vicoden and Motrin are not touching it now. It is Saturday and no doctor to get ahold of, so unless there is a change I might have a long, not so fun weekend.
And the long boring story continues.......

[rthom]

Wow, that's nasty--is this a normal response to your new medications? Seems odd to me (but I don't know anything), Well not sure this help's but we'll be here if you want to yack while you are waiting for a better day.

[Polar Bear]

Legs swollen/fluid retention from the knee down and hyper symptoms ... horrible....
You need to see about the swelling.

[ViewsAskew]

Safety info says to tell your doctor if you have swelling or fluid retention, especially in ankles or legs.

Did you remove the patch? I think I would have - anything that causes RLS is not a good thing in my book! And, I'm sure not in yours, either

[rthom]

That was my thoughts as well--the side effects have too many possibilities for serious problems and the WED worse thing I read your body being under stress.--But like I said before--just a fellow sufferer.

[debbluebird]

Take off the patch and go back to your other drugs. Call doctor on call for your doctor. So sorry, but I don't think you will get used to this drug.

DEB

[EeFall]

Yes, ditch the patch and take old meds until you can contact doc. Doc even had me cut the patches in 2 to see if half dose would work, but then it didn't do enough to work then.

[pamndorr]

Ok I gave the patch a chance to work...and it didn't. All it did after the first night was to make the WED go nuts. I took the dang thing off this morning..@3am....after a horrible evening and night last night. I ended up taking 2 of the vicoden and a motrin to try and go to bed...could only stay there for a couple hours and about went out of my mind from the WED symptoms.
So off came the patch and I took oxycodone and back on the Pramipexole....now I get to play catch up to the symptoms for a day or two.
I am so tired of the drug changes and nothing working for very long. Is it just me or is this how life is from now on?
I can tolerate Requip the best...but can't seem to make the jump from the Pramipexole to anything now. I know I need another dreaded "drug holiday" so I can go back to the Requip and maybe get a few months of peace...but the docs I have now do not believe in the drug holiday thing...actually they admit now they don't know what all is going on with me....they all seem to think I have multiple problems going on in my legs/ankles besides the WED.
It isn't a good thing to have to change all your doctors during treatment...but my doctors that started this nightmare with me 5+ years ago have both quit...one to go to emergency medicine and one got sick and had to retire...which left me with new doctors that want to try things their way. Not that I am a huge fan of the drug holidays and certainly not the methadone that comes with the holidays...but 8 weeks of methadone and feeling like I might die is better than what these drs are putting me through now.
Thank goodness that the sun is going to be coming up in another hour or so and I think it was supposed to start snowing last nght...I look forward to daylight and I love the snow.....now if I could just get this feeling to go away so I could get a little bit of sleep.
Thanks for listening to me and all the advise from everbody. You guys on here are truly the only ones that understand what this disease does to a person. My husband used to try and understand but I think he really wants the person back that he married and I am afraid that person is long gone and from the way things have declined over these last years doesn't look like I will ever be that person again.
Have a nice Sunday everybody and thanks again...

[rthom]

I love snow as well, it's great to notice the little things when we are having it tough. Boy I hope your dr's catch up soon to your realities. Have you ever seen Dr B? Maybe a note or some of his information would help your new Dr?

[ViewsAskew]

I wish I had an answer for you, pamndoor. I think many of us feel the same.

I can say I've had periods of normalcy where I feel much of me is the "real" me again, but I can't say they ever last.

If you just stopped the pramipexole recently, might these increased symptoms be augmentation?

[debbluebird]

I know exactly where you are coming from. It does sound like you need a drug holiday. But we all know that is hell going through that. Doctors can be such a pain, and harmful more than helpful at times. They just don't have a clue sometimes. Maybe you should try and find another one. I had to do that. I used hot baths, and a tends unit to get me through my drug holiday. It was about two weeks, then everything seems to calm down. I ended up restarting the pramipexole later. This disease wears people out. I know my husband is worn out. Good luck.
DEB