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!

Friday, October 05, 2007

Drug Interaction Still Causing Problems

I went to the Gastroenterologist Wednesday afternoon, and he did X-rays of my abdomen to determine if I was as constipated as he thought I would be, based on my symptoms. He was surprised to find that nothing in my colon was hard or compacted. After examining me, he has come to the conclusion that my problem is caused by spasms of the digestive tract, rather than weak muscles, as he had been telling me it was. So, now he thinks my trouble is exactly the opposite of what he had thought previously!! He prescribed Triavil, which relaxes the colon muscles, and he said I should feel much better by Monday.

I've learned my lesson though, so I specifically asked him if he was sure I could take this med with my Parkinson's meds. He said he did not think this would be a problem, but to ask my pharmacist. Full of hope that he had found a way to stop my very uncomfortable situation, I called our drugstore on the way home to be sure he had it in stock. But, when hubby came back from the drugstore, he didn't bring in the prescription bag. He said the pharmacist said his computer all but crashed when he put in the medicine, it produced such a strong warning that this was a dangerous combination with my other PD meds!!

At first I handled the news stoically, but later on that evening I went through a rough time of being very depressed, with lots of crying. I called my doctor's nurse first thing Thursday morning to let her know I couldn't take it, and to remind her that he would see Selegiline listed in the interaction information, rather than Zelepar, which is just a dissolving form of Selegiline. I think that must be why he didn't realize I couldn't take it.

Anyhow, I haven't heard back from him yet, so DH and I decided it was time to take matters in our own hands. We went enzyme, herb, and spice shopping, as I have been doing some research on my own about Irritable Bowel Syndrome (IBS), and I found some things that should help, without causing problems.

Yesterday, I started taking Turmeric, St. John's Wort, and Acidophilus capsules. DH's Oncologist has had him on Turmeric ever since he had colon cancer, and his doctor had already suggested I use it. We had our usual Date Day today, and I continued to belch a lot all day, but did not have any nausea at all, or my usual sensation as if my food was sitting at the top of my throat all day. I'm encouraged that I will find a way to calm my system down and get things back to closer to normal, whether my Gastro can find a medicine I can take or not.

I'm still very wobbly, though, so I used the cane just about everywhere we went today, and I'm using it in the house tonight, too. It may be that it's just going to take awhile to recover from the really bad state I was in Sunday, plus I may still have some of the Cortisol in my system. I'll have to see if I can find something about how long it stays in the system after getting an injection. Or, it may be that the St. John's Wort, added to my other PD meds, is giving me an overdose of Levadopa.

That's what makes figuring this all out so difficult, as too much PD meds makes for jerky movements, called Dyskinesia. If you've seen Michael J. Fox jerking around, you've seen it. When PWP have been on meds for a long time their systems process the Levadopa in a very unpredictable way, and you see these wild jerking movements. But early on, if the meds aren't strong enough, you see tremors. It's hard for me to tell if my wobbliness is tremor or jerking, so I can't tell, based on that, if I'm getting too little or too much Levadopa. My hands are only shaking ever so slightly, which makes me think I'm not getting too much. My Neuro will know when he sees me.

By then I should have heard from my Gastro doctor, and I'll know if the herbs are going to do any good or cause any problems. I will be doing more research, too, to be sure there are no contraindications of these OTC with my prescriptions.

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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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Tuesday, August 07, 2007

6 Doctor Visits in 6 Days!!

We have kept the roads hot this week, going from one doctor to another, even seeing two doctors twice. But at least I have a better idea of what's going on with several different problems I have been having. I saw my Gastroenterologist twice, and now he has me scheduled to see the doctor he wants me to use for the surgery I need to correct the problem with my digestive system. I was really upset about having to have surgery at a hospital I don't like, if my own doctor performed it. Now I can quit stewing about that. Dr. B solved that problem by telling me that he coordinates for this surgery with this particular doctor, who uses the hospital I like.

I saw the Sleep Specialist twice, too. The nights at the Sleep Study were not pleasant, as I was very uncomfortable in the bed, and the thing they had in my nose felt horrible. Halfway through the night, I got so upset about how miserable I felt that they changed to a different type of mask, and I got through the rest of the night fairly well. Tonight will be my first night to sleep at home with the C-Pap. Wish me luck!!

The tick bite looked really fierce for a few days and itched something awful, but now that I've been on the antibiotics since Friday, my left knee no longer looks like it's getting worse, and has stopped itching.

The Amitiza has turned out to be a good substitute for the Zelnorm that was taken off the market. I'm very pleased with how much it is helping with the constipation problems.

I've been reading everything I could get my hands on about the surgery I am to have, and I discovered that I cannot have Demerol if I stay on my Zelepar. I talked to the Sleep Specialist Doctor about what I would need to do about the Apnea when I have surgery, and I talked to him about the Demerol interaction I had discovered. He suggested I might want to tell them that I was allergic to Demerol, so it would be marked clearly on my chart and they wouldn't dare give it to me. The combination is extremely dangerous, so I might as well be allergic to it, right???

Now the only thing left to do is to make an appointment with the Orthopedic doctor, so I can get another cortisone shot in my right knee, which has arthritis in it. I don't want to be hobbling around the way I am now, trying to recuperate from major surgery!

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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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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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Saturday, November 18, 2006

Another Great Day!

We had a wonderful Date Day yesterday, with beautiful Fall weather, and some really nice finds at a handful of garage/moving and Estate sales. Because of the direction we headed, DH didn't have to deal with horrible Friday afternoon traffic when it was time to head home, like he usually does, so that made it even better.

We ate out at a buffet, so I was able to find plenty that I could eat, while he could get what he wanted. I've gotten in the habit of taking a couple of Beano caplets before I eat, anytime I even suspect that I'm going to eat something that might produce gas, and that seems to be helping, too. All and all, I seem to be settling into a pretty good idea of how to eat in such a way as to protect my stomach, as things have been pretty calm for several days now.

I wrote to the Ask the Doctor mailing list on the National Parkinson's Foundation site last week, and my post showed up in the email today. It takes about a week between sending in a question and getting an answer, as these are practicing physicians, who take the time to answer the questions. I had asked the mailing list doctor if he could suggest any meds that I could take in patch form, to bypass my stomach.

The doctor suggested I try the form of Selegiline, called Zelepar, that dissolves under the tongue and bypasses the stomach, and also go back to Sinemet, with a larger dose of Lodocyn. According to him, Requip causes more nausea than Sinemet does. My Dr. S. had said he couldn't promise that the Requip wouldn't make me more nauseated, but that he wanted to give it a try.

So, for now, at least, I'll stick to the Requip, but if the nausea and bloating start up again, I think I'll make an appointment with the Neurologist for as soon as possible, and see what he says about the Parkinsons's Foundation Doctor's suggestion.

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