Finding a Safe Online Pharmacy for Parkinson's Disease Medicine - part I

What if you can't find the PD medications you need for your treatment at a local pharmacy?

For those of us who were born in a time when information on almost everything was not readily available in our homes, it is amazing to be alive when vast stores of knowledge are finger taps away even when we are in our cars or hiking in the park.  When our children were growing, we kept a dictionary in almost every room.  A phone interruption at dinner time was not acceptable but stopping to look up the meaning of a word was encouraged.

When I was a child, there was an encyclopedia set to put one on the right track or just to read, page by page for the fun of learning about anything.  What do you want to know about Anacondas?

Now there is a huge overload of information.  We love that. But not all of it is factual.  Some is poorly edited or not accurate; some is sound- byte brief and some is just designed to separate us from our money. 

Because UCB has not been able to provide positive news about the Neupro patch availablability in the USA as they wait on the FDA, I thought I would continue the search of online pharmacies to see what I could find out there.  I found several online pharmacies which list the patch. I noticed was that the patch is very expensive. Because we had no knowledge of the prior US cost of the patch I decided to compare other medications for which I knew the price. They were expensive...not that expensive but at least 25% higher in price.  Of course there is also the question of the cold storage delivery.  And that is a BIG question.

We began to receive questions about the availability of other medications.   These questions were from markets with which we were not familiar. I just did a check on an L-type CCB, DynaCirc CR, availability and communicated with GlaxoSmithKline (GSK) as part of that search.  Turns out that despite the fact that they make the product and have offices in Australia, you can't find DynaCirc in there. You can, however, buy it from an online pharmacy in New Zealand, not to mention Israel, Canada and a few other places where I could not verify the online pharmacy.

I also found an online site which will check for some comparative prices and provide information about the pharmacies.  Therefore I did a domain search online because it is important to know the company trail - how long have they been operating their site - are they here today but gone when you are entitled to a refund or didn't receive the product they didn't really mail to you after charging your card. 

Since this company has been in business since 2002 with a 2008 update, we're passing that backlink along to you with a warning.  Although there are several ways to check for information things at the Pharmacy Checker website be advised, they do not list every bona fide online pharmacy, only their clients, and it is possible that they have some questionable clients on-board or at least did at one time.

This problem means that before you use any online company check the domain and also look for scam warnings. Due Diligence on your part.

Not all scam warnings are valid.  Some are just from customers who didn't read the shipping charges or the estimated wait time for arrival. Other complaints are very serious.  These complaints includethe company shipping the wrong item and labeling it incorrectly; taking  money for the brand and getting a generic which while similar might not be the same. And even worse, counterfeit pills.  Other scams include charging your card while not actually shipping the itemor submitting charges without authorization.

Companies can charge for shipping on a regular basis when you did not authorize such a program. Another danger is that you might receive out of date medication.

If your credit card is charged for any fradulent reason, report it to your card company immediately as this will enable to limit your obligation and in some cases your card company can bill back to recover your funds. If you reach this point, you can help others by reporting the scam and company to lots of online scam reporting sites and to any governing authority.

You need a prescription for prescription medication 
No prescription required is a red flag!

Another cautionary when ordering from a Canadian pharmacy is to look for the seals of accreditation. Some are real and some are fake. Note the seal and check with the issuer.  You can use either of the following links at the Canadian International Pharmacy Association (CIPA) to verify accreditation of the pharmacy you are considering. If you want to verify membership: contact CIPA.  They have a similar link under consumer safety. They will also list known sites which display a fake CIPA seal. There are other seals as well. Individual provinces will also require accreditation. As a matter of fact there is also a seal for the

Pharmacy Checker website.

Things to watch for: 

• Phone and fax numbers. Give them a call on their 800 number ostensibly to verify their mailing address or shipping & handling fees, whatever. But try calling at an off business hour.  Did you get a voice mail?  Anything?  Nothing tells you to move on. Don't leave a phone number or an email address.
• Does the site list an address - although this could be a mailbox company which would provide both street number and suite number they should be a legitimate pharmacy with a regular address.  I'm not so sure about companies which have drop shipping.
• Is their domain check questionable datewise?
• The AARP reported Double Drug Sting - just noticed this one - interesting 
• Do you have online access to the company pharmacist? 
• Do they ask for the prescription - if they don't - let your fingers walk away
• Is the price too low to be believed - don't believe and don't buy!
• Have you done your due diligence?  Are you dealing with a legitimate company? 

We wish that Parkinson's medications were available to all patients everwhere at affordable prices for everyone.  But the sad fact is then this isn't the case.  So we click our fingers on the keyboard and our options are displayed on the screen before us.   

Gluten & a Parkinson's Disease Patient - Part I

Gluten Free Me with PD

After 6 years of PD I've come to the point where I realize that if I'm going to make any more progress fighting PD I'm going to need to eliminate or greatly reduce the pain I feel in my knees when I excercise, especially when I walk longer distances. I'm only at a quarter mile, I need to be able to walk a mile or two with little discomfort. Pain is a significant factor in arthritis and, of course, in Parkinson's disease.

Massage takes me part of the way, working out at the gym has taken me where I am now but I have to find a way to make more forward progress and not just hold the status quo. In recent weeks and months I've tried turmeric and nettle but the nettle seems to make me feel dizzy; possibly it lowers my blood pressure. Swimming feels great while I'm doing it, but doesn't seem to have lasting effects although I haven't been in the water as often in the last couple of months.

DynaCirc CR has helped me tremendously but I don't think I can expect it to do more. Getting a forced excercise bike probably could help me but the cost seems out of reach now. My heart condition might prevent me from getting my doctor's approval for forced exercise anyway. On the other hand, my improvement from the process of learning the semi-elliptical recumbent bike is encouraging.

I also have some some urninary tract issues which I wrote about the other day. I've been trying to deal with the UT issues first. I tried saw palmetto and pumpkin seed for my prostate, urinary frequency and sexual problems. That resulted in a slight improvement in my frequency and sexual problems but was not the answer because I had to take more than the doctor had said would be safe to get those results. So I went back to nettle. It gave me better results and I'm still using these supplements but the dizzyness and sense of shaky balance side effect were taking me in the wrong direction.

Marge had been reading about low Gluten diets and sugested I try it for 3 months to see if it helped me. The gluten-free and the low-gluten diets sounded very difficult because you can't eat bread or pasta or any food with just a trace amount of wheat - not even a bagel! But 10 years ago I was a vegetarian and I was able to stick to that diet for a few years until my cardiologist said that my triglycerides had skyrocketed and that I should probably reintroduce some meat protein to my regimen.

I had help with that diet and while I depended quite a bit on frozen items so that I wouldn't have a long wait for a meal, I also learned to make a mean vegetarian chilli. That success makes me think I'll be able to stick to this plan too. So far I've been on the diet for 10 days and I'm getting some positive results. I'll start reporting how I'm doing this weekend.

Follow up reports:

Gluten Free Part 2

Gluten Free 2 months later

I Switched Back to DynaCirc CR

I Gave Generic Isradipine a 3 Week Trial but...

About a month ago I switched from DynaCirc CR to the generic form of Isradipine, which is not CR. I switched because I could save $1800 a year with the generic form of the drug. My doctor said they would both work about the same and if I got side affects I would get over them in a few weeks time. He suggested I take the generic for a month and see what happened.

So what happened was my left arm tremor which was almost gone came back strongly. People who know me commented on it. It wasn't as bad as before I started DynaCirc CR but it seemed to be getting worse I also started having swallowing problems again along with speaking problems. Sometimes I couldn't think of the a word or follow through on a thought process. Also having occasional trouble thinking about what's coming next. My typing problems are nothing new but the very act of typing seemed to be more difficult; my typing was worse.

All of these worsening symptoms prompted me to email one of the Isradipine researchers to get his opinion of the two drugs. This was the reply: "The CR formulation maintains a more stable serum concentration of Isradipine than the non-CR pill. This should better protect the DA neurons. So if you can afford it, stay on the CR format. If it is a matter of going off the drug or using the non-CR format, obviously I would recommend the non-CR format."

So I switched back to DynaCirc CR(R) 10 mgs a few days ago and my symptoms are already improving although it will take time for that process to complete itself. Another positive side is I feel I have more energy and that I am less tired during the day. I'd already stopped taking naps but I would still tire by early evening. I would have been happy to have that money each month but I'm not going to be selling any of my dopamine neurons for $1800, I've lost enough as it is.

The point is that Isradipine was helpful, no question about it. If your only choice is generic I think the suggestion to try it at the 2.5mg dosage 4 times a day is a good one. Since I can get DynaCirc CR through my plan although not at any appreciable discount, I'm back on it because the steadier time-release is very important to maintain the levels of the medication in the bloodstream. If they ever come out with the generic as a controlled-release, I would certainly be willing to try it because there is no question that DynaCirc CR is very tough on the budget.

Isradipine Phase II Trials for Parkinson's Disease

Professor D. James Surmeier's exciting work investigating the relationship between calcium and sodium channel modulation and Parkinson's disease has been widely known in the Parkinson's community since his June 2007 article in Nature. The article described how isradipine restores older dopamine neurons to their youthful condition. In it Dr Surmeier describes how he feels that people may be able to take isradapine to protect brain cells from Parkinson's like they now take baby aspirin for their hearts. He also hopes that Isradipine can extend by two to three times the therapeutic window that patients have to continue taking L-DOPA before it loses its effectiveness or starts to have serious side effects.

A small clinical trial has been completed at Northwestern University proving the safely and tolerance of Isradipine in PD patients. The phase II trial, Safety and Tolerability of Isradipine (a potential neuroprotective agent) in Patients with Parkinson's Disease - Stage II is still in recruitment. (see: below)

With funding from the Michael J. Fox Foundation Dr Surmeier is now working with fellow Northwestern chemistry professor Dr Richard Silverman to develop a new drug (calcium channel blocker) that will just target one of the two calcium ion channels, Cav1.3 L-type calcium channel antagonist to slow or stop progression of the disease. Success could bring a patent and marketing by a major drug company.

Source: http://www.michaeljfox.org/research_MJFFfundingPortfolio_searchableAwardedGrants_3.cfm?ID=492

Full text of clinical trial: http://clinicaltrials.gov/ct2/show/NCT00753636

Isradipine or DynaCirc

Isradipine, the generic instead of DynaCirc CR (R)

I've been taking Isradipine for one and one-half years to control my high blood pressure and to see if it would be effective in controlling my Parkinson's disease symptoms while slowing or stopping the progression of the disease.

Keep in mind no two Parkinson's patients are the same, so what has helped me may not help you at all, or you may not even be able to tolerate it.

That said, when I started DynaCirc CR within the first two weeks I noticed that my swallowing problems had decreased greatly, co-workers asked me why my voice sounded so much better. I felt better like I had more energy and that helped me get rid of a lot of my depression. I had been taking Mirapex, I was able to stop taking it. Once the Mirapex was out of my system, I stopped having most of the hallucinations and complusiive behavior that had been plaguing me.

My PDRS has been at 14-18, pretty much straight-lined since I started Dynacirc CR and these are the medicinal and supplemental treatments I have been taking:
Azilect 1mg/day
CoQ10 1200mg/day
Sublingual L Glutathione 300 mg daily under tongue
Atenolol 50mg/day
Lovastatin 40mg/day.
I take the following herbs and supplements: Turmeric, Saw Palmetto, Milk Thistle, Nettle Root, Omega 3 fish oils, Slippery Elm, Fenugreek, Green Tea extract, Vitamin B complex and Zinc on a temporary basis to see if it will improve my senses of taste and smell.

The last few weeks I have been comparing Dynacirc CR which contains Isradipine, a calcium agonist that crosses the blood brain barrier, with generic Isradipine because the generic drug costs me $3.00 /month and Dynacirc CR cost $151.00 for the same 30 day supply. My doctor told me they should work the same, plus or minus side effects.

I've been using generic Isradipine for three weeks now. The only negative things are having to take two 5 mg capsules instead of one. I don't think I'm taking it at the same time each day and that's giving me a little more tremor than Dynacirc CR which stays at the same level in your blood all day. It has been suggested that I could take four 2.5mg capsules to come closer to the time release effect but that would just be two more pills which I could forget to take because I hate taking any pills.

Positive effects are that I have more energy than I had before. With Dynacirc CR I took naps several days a week. Now I take naps only infrequently.

Parkinson's Patient Changes Doctors

I have switched to a new health plan as of the first of the year and I'm in the process of getting new doctors. I'd been hoping that I could find doctors from University Hospital which my Kaiser plan didn't allow but the Aetna plan does.

Ten days ago I had my first appointment with a University Hospital internist. As a Parkinson's patient it can be difficult to change doctors. Is he/she going to be traditional (sinemet) or alternative (CoQ10). This is my life and I want my doctor to see me and not a disease. I need to be proactive the the medical decisions made about my life.

On the phone, I had let the receptionist know that we were looking for a doctor with an open mind to possibilities. She advised me that while the doctor was not a Parkinson's specialist, he sounded like the person I needed.

As she suggested, I requested my medical records immediately so that I could carry them with me to the appointment although I should probably have dropped them off a day early.

She also advised me that Kaiser could take a while getting the records ready. The form actually had spaces for "pickup" and my phone number except the RUSH, added by a kindly intake woman at Kaiser. Days went by and no one called as we were told, instead Kaiser sent a letter telling me what I owed for the records. I received that letter on the day we drove over to pay for and pickup the package.

When I went to the appointment I was hoping not to hear any of the wrong words but I was prepared to keep on shopping if I needed too. We had made a list.

He began the appointment by greeting me and saying, "I understand meeting a new doctor can be stressful". That put me at ease as he looked through my medical records and asked me questions about what he saw.

My biggest concern was that I would not be able to find a doctor who would okay my prescription for DyaCirc which I am taking off label for my Parkinson's. That turned out to be no problem as he understood it could be used for PD.

He gave me the name of a movement disorder specialist (MDS) at the medical school with whom to make additional appointments, since I had never seen one under my Kaiser health plan. While I had seen a neurologist, she was not a movement disorder specialist. He also sent me to a dermatologist for head lesions that I've had for several years and so far always biopsy as benign.

He also encouraged me to see if switching from DynaCirc to its generic, Isradipine, would work for me. If isradipine helps me and I can tolerate it, the savings will be close to $1,800 a year.

One other good sign: I had printed out the information I had about Dynacirc CR and when I presented it, he asked if he could keep those copies for review with his students.

My impression of him: warm and friendly, easy to talk to. And willing to learn new things. He's going to be my doctor!

HAPPY NEW YEAR

I've been diagnosed PD for 5 years now. It seems to be the tremor dominant variety of the disease, although an aunt also had PD, my Great Grandfather had a neurological disease then called senility and lastly my mother has something now being called old age previously called Alzheimer's disease. So it could just be that I have genetic PD with an exposure to pesticides in my childhood and again as a young adult (gun-trigger.)

My PD started out with loss of sense of smell and foot dragging, as well as a discrete tingling pain in my body and arms. After a year or two I started having a left arm tremor when I felt emotional: either good, bad or stress. Some times in a very stressful situation my arm would shake a lot but mostly it is a very gentle hardly noticeable hand tremor.

Before I was DXed I was pretty sure what I had so I started taking COQ10 450mg/day. After I was DXed, my neurologist had me increase the COQ10 to 1200mg/day. He also added Amantadine 200 mg/day. Eventually he had me add Mirapex and Selegiline. At this point I started having very complicated hallucination's and vivid dreams. I didn't get obsessed over gambling like many PD patients but I started thinking about women obsessively.

Meanwhile I experienced several symptoms that were new to me, double vision, swallowing difficulty , occasional difficultly speaking,stiffness in my left arm and greater rigidity in my whole body. About a year ago I started using a cane because of the pain my arthritis was causing when I walked.

After my neurologist moved away my Kaiser health plan sent me to another neurologist who told me the hallucinations I was experiencing weren't too bad and that I should "learn to live with them." He thought it was a trade-off worth trying. (Easy for him to say!) When I refused to go along with that he had his assistant try to convince me that Levodopa was my only other good alternative. I changed neurologists again and was prescribed Azilect 1 mg/day and added Dynacirc 10mg/day.

That was about 1 1/2 years ago. Since then I have added Turmeric 1200mg/day for my PD and osteoarthritis. Turmeric is a powerful herbal anti-inflammatory whose main component is curcumin, the significant ingredient. I also began taking Glutathione with NAC (N-Acetyl-L-Cysteine) as a sub lingual 450mg/day accompanied by Milk Thistle Extract.

My present condition is pretty decent considering. Biggest problems are sleeping, stiffness and rigidity, pain in left knee, cane dependency, depression and having a feeling of foreboding about the future.

As we go into the new year I plan to try to eliminate these problems by tyring new approaches or continuing ones that have helped. Massage therapy has helped reduce my stiffness very much, as has aqua therapy. I've started using the Nautlis machines at the aqua center and I will continue that in the new year. Massage with aqua therapy has been making my knee less painful, so I've started to wean myself from the cane.

You may have noticed I haven't called any of these things New Year's resolutions. I don't have a good track record in that department...check with me in a month.

A Good New Year to All,
Stephen

VOICE AND SWALLOWING EXERCISES FOR PARKINSON'S DISEASE

WHOSE OLD FATHER ATE BEANS ?
I have PD, so that would be me for vegetable protein

Over the years my wife has said that I should be doing vocal exercises to relax my throat. She's very aurally sensitive and one of the things that she always liked about me was the sound of my voice. Not necessarily what I said but she did like to hear the music.

Even before I was diagnosed with PD, she was always suggesting a very simple vocal exercise to open my throat when I was tense or tired. The result she sought was that my tones would deepen and the music that she heard would resume.

Although I understood why she was making the request, I never considered that her years of theater and her minor in speech therapy made her anything more than just my wife. But I would humor her and do a few riffs of the exercise and when I spoke again, she could hear the results. So she was happy and I was happy because she stopped bugging me.

She's starting up again. The exercise is very basic and I will pass it along. You can do this without the Lee Silverman Voice Training Foundation and all you need are two or three clean fingers, clean because you'll be putting them in your mouth.

The problem is that the next thing she's going to make me do is to read to the dogs. This is to help me lose the monotone and restore expression in my voice, she tells me. She's giving me a choice from Lewis Carroll: Alice in Wonderland or Through the Looking Glass both favorites with her family who often gleefully exchange passages over dessert at family dinners. She says, however, that in lieu of Alice, I can read any Dr Seuss book of my choice to the dogs and cats. She feels that this will help to release the monotone and give me quality time with our four-foots (who might be just as happy with edible treats.) I can, of course, continue to read to her but she wants jokes or things that really interest me. She says this demands more emotional response on my part than just predigesting the news for her as I have over the years. Reading aloud with feeling is an excellent vocal exercise for PD.

With Parkinson's one of the first areas of symptom identification is decrease of laryngeal function leading to problems swallowing and problems communicating due to loss of volume and inarticulation. So the PD patient speaks softly, doesn't enunciate as well and, of course, more often than not speaks in a monotone. Family and friends can compensate for the movement difficulties but it is harder to compensate for the communication shut-down.

At this point I can still enunciate well but sometimes when I am tired or feeling "off" my voice pitch goes up quite a bit and someone turns down the volume. She says that we are lucky that communication isn't a real problem yet and that we still have time to work on this muscle relaxation technique. I know that the DynaCirc CR does help my voice and my swallowing so my instinct has been to duck the exercising but she won't take "No" for an answer. So I'm going to be doing the following exercise several times a week and I will report on the results in a month.

Open your mouth

Insert two or three clean fingers - depending on the size of your fingers and the size of your mouth. I suggest beginning with two fingers held vertically. Grip them with your teeth if necessary but not to the point of pain.

Now repeat after me: ooo O aah A eee.

Those are the vowel sounds in the mnemonic, "Whose old father ate beans?"

You can begin slowly and distinctly. Let each breathy sound linger.

There is also a breathing pattern here: you are expelling air on ooo, breathing in on O, breathing out on aah, in on A and out on eee.

Continue to repeat the exact sound group and as you do, gradually increase the speed until the sounds elide.

By this point all sounds will be on one breath. This will force the muscles to really work.

Eventually you should turn up the volume.

What you will notice, herself tells me, is that these sounds are not formed on the tip of the tongue, the teeth or the lips (which by the way is another helpful exercise if you are not speaking clearly, because it is good for the consonants) but at the back of the throat. And that is the exact area we are trying to reach. That is also why you use those fingers to keep your mouth open and to force the sound from the depths.

Each sound cluster is important and leads to the next cluster. After a few minutes, stop, clear your throat if nessary, breath deeply, exhale deeply to relax, inhale and speak. Listen to your voice; hear anything different?

You might want some more technical reading about the problem and I am including a link for that as well.

http://www.emedicine.com/ent/topic797.htm

DYNACIRC CR FOLLOWUP

When I discovered that DynaCirc CR 10mg was available again, I felt the weight of an interminable wait lift. I called the pharmacy immediately, picked it up and was ready for the next day.

I've been back on DynaCirc for three days now. The down feeling I experienced every day about an hour after taking Nefidipine is gone, as well as the light headedness that often drove me go back to bed for a couple of hours.

My polyuria, urinary frequency, increased while I was on Nefedipine and off Dynacirc. Now it's becoming less frequent - returning to normal for a man of my age.

I am told that my mood has improved and some mental energy seems to have returned. This may be from the relief of returning to DynaCirc or it may be a a direct consequence of the medication. I do get tired earlier in the evening but that was something I experienced before.

I'll continue to report on my progress in a few days. For the time being I am being required to do some work around the house. I also have to exercise more diligently as instructed by both my wife and the staff at the Aqua Therapy Center.

NIFEDIAC vs DYNACIRC

I am still living with the hope that a generic version of Dynacirc will become available soon.

Dynacirc CR is the calcium channel blocker which I had been taking until its manufacture ceased and none was available. Calcium channel blockers prevent calcium from entering the dopamine neurons, thereby preventing their deterioration. In essence this CCB causes a revesal to the more youthful saline environment.

I have already written about Dynacirc and the change of my meds to Nifidiac CC. Below is my comparison table to answer questions about the differences which I observed between the two. Both do cross the blood-brain barrier which is why they can affect Parkinson's symptoms.

I still have some hope that we will see a generic Dynacirc in November or thereafter if all of the patents have expired and any legal issues are resolved.

SYMPTOM	NIFEDIAC CC NIFEDIPINE	DYNACIRC CR ISRADIPINE
Swallowing	Not as effective	Rarely choked
Mild dizziness-lightheadedness	not as effective	less often
Balance	Weakening sense of balance	Improved when taking
Stiffness - Rigidity - Gait	Returning in foot, hand, neck	Improved when taking
Tremor	Not as effective	Slight improvement
Erectile Dysfunction	Might have improved	Reviews say better
Energy and clarity	Not as effective	Improved when taking
Sense of smell and taste	No change	No change
Hearing and vision	No change	No change

Table explanation:

Difficulty swallowing is common PD symptom. It is a direct factor in the leading cause of death of Parkinson's Disease patients, aspiration pneumonia. Related to the inhale-exhale cycle, it has been learned that the normal adult pattern is to swallow during exhalation; PD patients often inhale during this process. If the result goes beyond choking, the lungs will inspire bits of foodstuff which can result in aspiration pneumonia. Dr. Roxann Gross, PhD at the University of Pittsburgh School of Medicine is currently working with PD patients to retrain and re-coordinate their patterns of breathing and swallowing.

Mild dizziness-Lightheadedness, a difficult symptom to describe is a side effect of any blood pressure medication. Because both Dynacirc and Nifediac are blood pressure medications, the side effect is not unexpected

Balance has more to do with the sense of balance. You feel that you are straight but in fact you are not. It is one of the reasons that I use a cane for protection against falling, the second leading cause of Parkinson's deaths.

Stiffness-rigidity often on one side of the body. Commonly seen in face, neck, arms, legs, hands and ankles and feet. I have stiffness in my left arm and hand and my left leg, ankle and foot.

Tremor is another typical PD symptom. It is the one symptom most commonly associated with Parkinson's. My tremor is just in my left arm. There was a time when it would manifest in my left leg when I was stressed but that did stop after I began to take Dynacirc.

Erectile Dysfunction is thought by some to be a causative factor and not simply a symptom of PD. I am being told that the ED was helped by the Dynacirc.

Gait is related to the stiffness and to balance. My gait is stiff and my steps shorter.

Senses of smell, taste, hearing and vision. I rarely can smell anything these days. Fortunately my wife doesn't make me clean the kitty litter boxes because of my balance issues. Although I have lost 95% of my sense of smell, I can still taste. I prefer hotter seasonings, however.
Energy and clarity were immediately increased to a level I had not felt in a few years when I began taking Dynacirc CR. I do not feel that same energy on Nifedipine-Nifidiac CC.

What I Did When DynaCirc Wasn't Available - so glad it's back for my PD

While I just take a few medications and supplements for Parkinson's disease: Azilect, CoQ10, Creatine and DynaCirc. Azlicet has been proven in a large trial approved by the FDA to slow the progression of PD. DynaCirc CR is in trials now. Preliminary testings shows it either slows or stops PD progression and possibly grows new neurons as well.

DynaCirc is a calcium channel blocker of the Dihydropyridine subclass used mainly for blood pressure control but it has an open label that allows it to be prescribed for other treatment like PD. I've been using it for more than a year.

When I first started taking it I immediately noticed certain improvements. My swallowing difficulties and voice pitch problems were eased. Friends asked what had I done to improve my voice so much. Although I stopped taking Mirapex and Selegiline, my tremor actually improved a little; I still had a tremor when I felt emotional. My left arm still didn't swing naturally when I walked. My fibular brevis muscle and the associated flexor tendons continued to pull my toes up in my left leg when I walked or lay in bed.

But I felt good. I didn't think I was getting worse and just maybe I might be getting a little bit better.

Because it had happened before, I wasn't surprised when I went to Walgreens to get my Dynacirc prescription refill at the beginning of July and the Tech told me they didn't have any Dynacirc but would get it from another Walgreens and have it for me the next day. What surprised me was the next month, August, when they told me that they had none and neither did any other Walgreens. They suggested I talk to my doctor about a replacement drug. I was told that their supplier was out and they didn't know when it would be back in stock.

When I talked to my MD he looked at the schedule D calcium chanel blockers which are the only options on the Kaiser list and chose Amlodipine from the three listed. I started taking that medication on August 28.

After a few days I began to feel less coordinated, less balanced; my voice was regressing as the muscles in my throat tightened, the trouble I had swallowing was back, my body felt very stiff. I thought these were just side effects from the new medicine; I thought I would get used to it.

After about a week I felt so stiff that I could barely get out of my wife's car. It seemed as if the PD was progressing at a rapid pace each day. After another week I started thinking about what was different: treatments? medication? Then I realized I wasn't taking Dynacirc any more; now I am taking Amlodipine and that was when the deterioration had begun.

I emailed my medical situation to a friend who works in a research lab at local university medical center. In less than an hour he emailed me back that " Amlodipine was an unfortunate choice" as it does not go through the brain blood barrier (BBB). That meant I hadn't received medicinal benefit from the Amlodipine which would affect my PD or did it mean that Amlodipine just didn't work as well for me. Subsequent to posting this article I learned that aplodipine does cross the blood brain barrier. So I guess it wasn't the medication for my Parkinson's symptoms.

We posted a chart of Calcium Channel Blockers which cross the Blood Brain Barrier on 4/4/2010.

I called my MD and had the names of the two calcium channel blockers that go through the BBB ready for him: Nifedipine and Felodipine. I'll start taking Nifedipine (Nifediac) tomorrow morning. It is a generic and considerably less expensive.

2/05/09 note: Dynacirc CR has been back on the market since November 2008
The lesson learned was that if a med you are taking is unavailable - an unusual situation - that you need to ask what about it worked for you and why. Then you won't waste time and possibly jeopardize your health taking a "substitute" which won't perform in the same way.

Additional note: When I switched health insurance we had to go with a generic unless a specific prescription was submitted by the prescribing physician.  I briefly tried Isradipine, the generic version of DynaCirc.  Among other issues with taking this generic was the fact that it was not a controlled release.  Even taking 5mgs 2X a day was not the same. I wrote about my isradipine experience on 2/08/09