Day by Day with Parkinson's and Peripheral Neuropathy

I was diagnosed with Parkinson's Disease and Peripheral Neuropathy in 2006, but my symptoms seemed to take a turn in a different direction in late 2007. The current diagnosis is Essential Myoclonus. You will find record here of a my journey - coping with the testing, the medicines, nutrition, digestion problems, exercise, the emotions, and no telling what else!

Wednesday, September 26, 2007

Can't Take Meds I Used to Take

I've been working out in the yard a good bit lately, as part of my exercise. I've made some headway with our yard, but I've also come in contact with poison ivy somewhere along the way. I am extremely allergic to it, so I'm broken out over a large part of my upper torso, front and back, on my neck and face, and even in my hair. I have no idea how that happened. We have new cats outside, too, and I may have picked it up cuddling them.

So, I pulled out my trusty Benadryl, in addition to the topical anti-itch meds I always have on hand. Benadryl makes me sleepy, so during the day I've always used something like non-drowsy formula Sudafed. When DH went to the store he couldn't find the exact same Sudafed I was about out of, so he took what appeared to be a similar medicine to the Pharmacist to make sure it was OK for me to take it. He made sure he told her I had Parkinson's, and she said it would be fine.

I hadn't even thought about checking for PD drug interactions, so I'm glad hubby did. Particularly since I did take one dose of the 12 hour Sudafed with Pseudophedrine Hydrochloride in it this morning, and I've felt yucky all day long today. When I looked on the new box to see how many to take, despite the fact that DH had asked the pharmacist if it was OK, there in fine print, among the list of conditions that made using it unsafe, was - you guessed it -- Parkinson's. The same warning was on my old box of meds, too, and I hadn't even thought to look. That's BAD.

So, I called our local Pharmacist to double check, and sure enough, I can't take it. DH has gone there now to get Chlorotrimiton, which has nothing but an antihistamine. It doesn't have any decongestant in it. My Zelepar is in the MAO class of drugs, so I have to pay attention to things like that.

As careful as I am to check on drug interactions with prescriptions, it never occurred to me to check out these over the counter meds, as I've taken this combination for poison ivy for years. BAD GIRL, BAD GIRL!!

I've hopefully learned my lesson, though, and will not let old habits take over again. Cause the old gray mare ain't what she used to be!!

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Wednesday, February 07, 2007

Cymbalta + Zelepar = BIG NO NO!!

I sent my DH to the drug store yesterday evening to pick up the prescriptions I had ordered earlier. When he brought the bag back, our local pharmacist had written a large note on it. It seems my Cymbalta and Zelepar can have a dangerous drug interaction. So, he didn't fill the Cymbalta, but told me to call my doctor.

Before calling the Neurologist, I thought I'd look up a little about this combination for myself on the Internet. Well .... I don't need to call the doctor!! Cymbalta is OUT!! Not only do the two cancel each other out, but the combination can cause something called Serotonin Syndrome/Poisoning, which can be fatal in its extreme manifestation. I have definitely had one of the milder symptoms, which I was blaming on the Zelepar, as it started after I started taking it. Out of nowhere, I would start sweating profusely and be so hot I just about couldn't stand it. I've mentioned this before, as it feels just like menopause hot flashes at their worst.

The Cymbalta prescription came from my General Practitioner, who prescribed it almost a year ago. The Neurologist had a complete list of my medications, so at least he should have known I was on it when he put me on Zelepar, which is the dissolving form of Selegiline.

So, as is so often true, it's the Pharmacist who is the expert when it comes to such interactions of medicines. This is the best argument I know of to use only one pharmacy for all prescriptions.

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Saturday, January 06, 2007

Tummy Improvement OR Walking Faster?

I've been on the new Zelepar medicine for several days now, and my digestive system is behaving just fine. I don't seem to be getting quite as much help with my gait as I did with the Requip or Sinemet, however, but I'm still on the samples. When I go back to the Neurologist next Friday, it may be that he will order a prescription for a higher dose or more doses, which might make the difference. Anyway, even if the dose stays where it is now, it seems like a reasonable trade off between stomach problems and balance and walking problems. I'd love to walk better, but I can live with it the way it is now, if I have to. It's nice not to spend part of every day miserable, with a hot pad on my tummy!

I said at first the Zelepar didn't taste bitter, however, I'd better amend that evaluation. Yes, it is bitter, but not enough to bother me, anyway. (The trick is to be sure you place it under, not on, the tongue.) It dissolves under my tongue so quickly that it's just a few seconds, and I can swallow it. You're not allowed to drink or eat anything for at least 5 minutes before or after taking it, but my saliva quickly washes the taste away.

We're still staying with my Daddy, which means I spend most of my days and every night in a hot house. We tried to find a compromise temperature for the thermostat, but at 101, he gets too cold, while we're still sweltering. I have noticed that I'm having more trouble with the heat this week, since I've been on the Zelepar, than I was before I started taking it. I'm getting what feels exactly like hot flashes several times a day, and I've been past that stage for some time now. I have read that Parkinson's can mess with the body's regulation of internal temperature, so I guess that's what's happening to me right now. Or is it because of the Zelepar? I really don't know.

I was on Requip before starting the Zelepar. Requip is a dopamine agonist, but Zelepar is an MAO-inhibitor, so they don't attack the PD symptoms the same way. There's big news in the Birmingham News today that a doctor at UAB is close to getting FDA approval for a patch version of a dopamine agonist. That will be good news for me, as the Requip did a better job of improving my balance and walking than it looks like the MAO-inhibitors are going to. I'm all for any PD med that I don't have to swallow!! So this is something else for me to be hopeful about.

It's great to see that there is good news on the horizon for the large number of people who really suffer with this disease. My own symptoms and discomfort level are so mild compared to people who have had Parkinson's for years. I pray that all this new research may bring them relief in the near future, instead of years from now.

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Wednesday, January 03, 2007

First Dose of Zelepar, My New Parkinson's Medicine!

This is the day I have been waiting for for about two weeks now. I spent that time tapering off of the Requip I had been on, went without any PD medicine yesterday, and this morning I took the first dose of Zelepar.

Zelepar is a quick dissolving tablet form of Selegiline, which dissolves under the tongue. It tasted a little like an orange mint might to me, but it does dissolve extremely fast. There was also a little tingle on the tongue, but nothing uncomfortable. I had read somewhere on the Internet that it tasted bitter, but, for me at least, that was not so. The directions emphasized not to drink any liquids or eat anything at least 5 minutes before or after taking it. I'll be taking it twice a day while I'm on the samples, but I'm to go back to the Neurologist at the end of this two week trial.

I felt my walking begin to smooth out within about 30 minutes. It may be my imagination, but I think it's made me a little hyper, too. (Of course, I've been so slow the last two weeks it may be I'm just normal now.) I'll have to be careful when I take the evening dose, if that's so, or I won't get any sleep tonight. LOL

I've been reading the explanations of what a MAO-inhibitor is, which is the class of drugs that Selegiline falls in, and I think I've got it figured out. Basically, it's some kind of high powered targeted anti-oxidant, that keeps the smaller amount of dopamine that my brain is making from being broken down prematurely. So I'm getting the full benefit of what my brain is naturally producing.

There is also some research that suggests that Selegiline may actually protect the part of the brain that makes dopamine, and possibly slow down the progression of this disease! If you're not really familiar with Parkinson's Disease, that may not sound so significant, but it would be quite a break through. All the other meds treat symptoms only. There is a possibility that Selegiline may effect the cause of Parkinson's!! I'll not go so far as to get my hopes up for that, but you bet I'll be watching to see if that turns out to be true.

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Thursday, December 28, 2006

Tapering Off Requip

When I went to my Neurologist last Tuesday, we decided I would stop taking the Requip, since it was probably the cause of all my stomach problems, other than the PD itself. Also, it was the likely culprit for my hair loss. So, Dr. S. told me to taper off the Requip before I changed over to the samples of Zelepar he gave me. That meant last week I only had two pills a day, instead of the usual three. Starting Tuesday of this week, I've only been taking one a day.

Dopamine is the brain chemical that controls muscle movement, and that's the one that people with Parkinson's no longer make enough of. Requip tricks the brain into accepting the chemical in it as a substitute for the dopamine, so it's called a dopamine agonist. Now that I'm down to one pill a day, I can really tell it! My balance is terrible, and my walking is stilted and jerky.

As long as DH can take over the care giving tasks I'm not up to, I'll continue to do as much as I can to help Daddy. We've only got to make it until next Wednesday, and then I can start taking the new medicine. Zelepar, a special form of the medicine called Selegiline, is a different type of Parkinson's medicine entirely. It is an MAO-inhibitor. I've read what that means a dozen times now, but I still don't understand it well enough to put it in my own words LOL.

The reason Dr. S. is trying this particular prescription is that it dissolves on the tongue and does not go through my digestive system. It goes straight into the blood stream. With the improvement in stomach comfort that I'm seeing from the Miralax and glycerin suppository combination, I'm hoping this new medicine will be the perfect one for me for the time being.

I do know that at some point I will have to go back to taking Sinemet, which was the first medicine I took. It nauseated me, too, but I'll cross that bridge when I get to it, because there is a patch form of it in drug trials now.

So for the next few days I'll be weaving and lurching around here like I'm drunk, but I can put up with it, knowing there's something new to try just days away. I am ever thankful to God that there are so many researchers working to find new ways of fighting the symptoms of this disease, working on ways to slow its progress down, and ultimately to cure it.

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Tuesday, December 19, 2006

So I'm Stopping the Requip

I went to my Neurologist today, and we discussed my digestive problems, hair loss LOL, and insomnia. His solution was to taper off the Requip until I have quit taking it completely and see what happens to my stomach problems. He also gave me a prescription for a time release version of Ambien. And, of course, if it was the Requip that was causing the hair loss, stopping the Requip will take care of that situation.

I told him about writing to the National Parkinson's Foundation "Ask the Doctor" site, and what that doctor suggested. So he's given me some samples of the medicine the NPF doctor suggested I try. I'm not supposed to use it until I've completely stopped the Requip, if I can possibly stand it. But I explained we were taking care of my Daddy, and I might not be able to put up with my impaired walking that long. He wants me to try, so he can get a fair assessment of how the new medicine works, but he does understand our situation.

He gave me samples of Zelepar, one of the brand names of Selegiline. It dissolves on the tongue, so it does not go through the digestive system at all, but straight into the blood stream. I have high hopes for this medicine. It is also a different type of medicine than I have had before. This one is an MAO inhibitor. I'll have to do some research to fully understand what that means.

I am very thankful that all the research over the last few years means there are a lot more different types of medicines for him to try on me than there used to be for Parkinson's. None of them slow down the disease, or do anything at all to cure it, but they do help with the symptoms. For now, that is a blessing. Hopefully, in my lifetime, they will find ways of at least slowing the disease down. And who knows, maybe they'll even find a cure.

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