WED Pain Sensation vs "Real" Pain from an Injury

[Polar Bear]

I am smiling as I type this. How lovely to hear that your body has found 'peace' albeit medicated.

[EeFall]

It was really nice to be able to watch television last night without my hands feeling like they were shaking and without my legs insisting that I jump up to walk around. As I type this in the AM today, I realize that I am not moving my ankles or bouncing my feet as I sit at my desk. So this is what life is like for "normal" people !

Awesome that you are "normal" with the 2 doses.

[ViewsAskew]

Therefore, I am still in the adjustment phase of treatment. Currently timed at about 5:30P and 8:00P, but the timing of the first dose is subject to change over the next week or so.

Hope this lasts for a while. It is a very nice feeling to be able to relax and have my body feel calm. I might even be able to relax and enjoy our vacation over the Christmas holidays if this keeps up.

Steve, you might find that you don't need the full .25 both times. You might be able to take .125 instead for that first dose. Or take .125 three times instead of .25 twice. Any reduction in the dose is a good thing in terms of being able to use this for a long time.

Of course, if it doesn't work, it doesn't work. Just don't be afraid of trying to manipulate it a bit.

[Rustsmith]

Steve, you might find that you don't need the full .25 both times. You might be able to take .125 instead for that first dose. Or take .125 three times instead of .25 twice. Any reduction in the dose is a good thing in terms of being able to use this for a long time.

Ann, that is what I had been planning. Unfortunately, my insurance requires that I use mail order for scrips after an initial 90 days. My local pharmacy provided pills that were scored for breaking in half. The 90 day supply of pills provided by my mail order pharmacy are some of the tiniest pills I have ever seen. There is no way to break them. In fact, they are so small that I am going to have to be very careful to make sure that I swallow them and that they don't get stuck in the back of my throat. I didn't want to take this large of a step, but I don't have much choice. But then again, the upside is that it is working and I don't feel like I have Parkinson in my hands every afternoon/evening.

Steve

[ViewsAskew]

Steve, you might find that you don't need the full .25 both times. You might be able to take .125 instead for that first dose. Or take .125 three times instead of .25 twice. Any reduction in the dose is a good thing in terms of being able to use this for a long time.

Ann, that is what I had been planning. Unfortunately, my insurance requires that I use mail order for scrips after an initial 90 days. My local pharmacy provided pills that were scored for breaking in half. The 90 day supply of pills provided by my mail order pharmacy are some of the tiniest pills I have ever seen. There is no way to break them. In fact, they are so small that I am going to have to be very careful to make sure that I swallow them and that they don't get stuck in the back of my throat. I didn't want to take this large of a step, but I don't have much choice. But then again, the upside is that it is working and I don't feel like I have Parkinson in my hands every afternoon/evening.

Steve

Ah - you do not have to cut these! Pramipexole (at least every type I've had) tastes pretty good! It's sort of sweet. I nibble a bit off of mine . Sure, it's not perfect, but it works and I take less than I would. Could be yours are different than mine, of course...but hope they aren't.

[Rustsmith]

I was able to cut the remaining supply of my old, larger pills. So I am going to try the reduced dosage until I run out, which should be about two weeks.

Nibbling on the new, small pills is not an option for me. One, because these things are SOOO small. I measured them and they are 3/16 inch in diameter, by far the smallest pill I have ever received. Second, a facial injury in junior high left me with front teeth that had to be ground flat to even them up. As a result, if I tried to nibble one of these tiny pills, all I would accomplish is crushing it.

[ViewsAskew]

Sounds like this isn't going to work all that easily! You could grind them - mortar and pestle. You'd need to figure out how to divide, though - not necessarily easy to divide evently . I'd never suggest that with some meds (some should NEVER be crushed) - with this, though, it's likely not that big of a deal if you get a bit more or less each time and they can be crushed. Still, likely easier options, such as using your other supply first.

Hope the reduced dosage works with the larger ones - if it does, maybe you can get an additional script for .125 mg pills to use just for this purpose.

[ViewsAskew]

Hey - just found an interesting study - pramipexole is being investigated to treat many things (including depression). But, one was to treat pain involved with fibromyalgia. Could be that it actually helps other pain: http://www.ncbi.nlm.nih.gov/pubmed/16052595

[badnights]

What impresses me with your story, Steve, is the nurse who knew what you had, after all the doctors who didn't. Your symptoms are slightly off on the other side of typical, but even if they had been textbook, chances are those doctors still wouldn't have recognized it. That's what needs to be changed. Every time we teach a doctor a little bit about WED, we're making the world a better place. I think your muscle pain is interesting. I also don't usually experience my symptoms as painful, so I haven't felt anything similar, but you describe it well. It must be a different phenotype; maybe you have two of them.

[Rustsmith]

Ann, the 4.5 mg dose of pramipexole that they used in that study was really substantial compared to WED treatment. But, since the fibromyalgia test subjects had failed all other treatment scheme, I guess they didn't have much to lose. Hopefully the treatment works differently so that they do not undergo the same problems that we would see at that level.

As for my "normal" leg pain, I can definitely report that my current pramipexole treatments have no impact. I ran in a race on Saturday and because there was a substantial monetary prize riding on the outcome, I pushed pretty hard. As a result, my legs were quite still Saturday evening. Fortunately, they responded quite quickly to massage and a hot shower.

As for my trial use of 0.125 in the afternoon and 0.25 at bedtime, that is still working quite well.

Beth, I have an appointment just after New Years with the neurologist who missed my WED for five years. It is going to be interesting to see how that discussion goes. I like her as a person and she was very receptive to my complaints about side effects of Topamax. She has also been more concerned about the status of my migraines than I am. However, my wife 'fired' her earlier this year because she refused to put my wife on a new MS drug after pestering my wife for years to begin drug therapy. The reason was simply because the drug was too new. So, now we are driving 40 miles into Houston to see a doctor at one of the two medical schools (one of Dr. Ondo's associates).

[ViewsAskew]

Hope it works well with one of Ondo's associates - it's not fun to have to change doctors, especially after you bond with them. I feel for your wife.

Yeah, the dose was a lot higher. Interesting that they used it and it was effective for that kind of pain, though. I did wonder about long term issues. Could be our chemistry is just different enough that they won't manifest they same kind of issues that we do. We can hope.