Tuesday, September 16, 2008

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


  1. I am anxious to hear how the Nifedipine works for you!! Hang in there and keep up the good fight! b'nana

  2. I have a family member that I am going to encourage to take DynaCirc. I am curious, how long have you been suffering from PD? At what point did you go on DynaCirc? Who is the Doctor that recommended the drug? Obviously, I understand this is a private matter; but, people like you posting these types of things really helps! I truly appreciate it!

    My family member was diagnosed late last year and his Doctor doesn't have him on anything.

    You can e-mail me at hackley01 AT gmail.com with your responses, if you are so inclined.

  3. Many doctors today feel that patients should be treated as soon as their symptoms are diagnosed as Parkinson's disease because once the neurons die, they are gone.

    As a matter of fact, one of the reasons we have discussed precursor symptoms such as loss of sense of smell & taste and depression should be considered symptoms and serious attention should be given to them as soon they are related to the doctor. If they don't know, they need to refer the patient to a neurologist - neuromotor neurologist.

    Neurologists, however, will not be prescribing DynaCirc CR. They may in the future but certainly not at this time. The clinical trials
    aren't completed. GPs and Internists might prescribe DynaCirc CR. That is where I got my original prescription after providing my Internist with information about the initial trial results. (There is yet another article pending about what I just learned about the difference between DynaCirc CR and Isradipine, the active ingredient in DynaCirc, and why the choice should be DynaCirc over the $$$$ saving Isradipine if at all possible.)

    I'm not a doctor but I am a patient who recognizes the as a PD patient I need to be proactive in my own treatment in order to get the best possible results for the longest time.
    I do not want a doctor who will rubber stamp my disease because Parkinson's patients manifest their symptoms differently. That was why I was so relieved to find a new doctor who was open to information I provided to him and who already knew that DynaCirc CR (R)is now considered an off-label med for PD.

    What you need to do as the caring person you obviously are is to help your relative make a list of ALL symptoms no matter how relevant. Go back farther than the diagnosis. Make a list of anything that seems to relate including head injuries and long term pesticide exposure. Welding, whatever. Other relatives with PD.

    What does your relative feel about not doing anything - not taking anything even anti-oxidants to combat the symptoms and delay the progression? Why do you think this relative accepts the doctor taking no action? Could that be symptomatic in itself.

    Did this relative get a neurology referral? PD should only be diagnosed by the proper neurologist. (Check the index on the right for other posts to read under About Parkinson's Disease.

    I've been a member of Patients Like Me (Parkinson's Disease) for a few years and the wonderful thing is that YOU can become a member as a caregiver if your relative is not ready to join. There are excellent forums and you can even track your progress. You can use this link:
    http://www.patientslikeme.com/ or you can link through the Patients Like Me ad at this website because they have recently become an advertiser.
    Both my wife and I are members. She is a member (no cost to either of us) as a caregiver.

    As I said, I am not a doctor butI know that I am the party most concerned about my care, I read as much as I can and that is why I began this blog to share what I have read and what I or others have tried.

    It is important that you remember that what we say here is only to provide information and some emotional support so that you can continue to research what issues to discuss with the doctor. And your relative needs to be seeing a doctor who will discuss the journey of Parkinson's NOW. PD isn't waiting for the doctor to take action.

    Take a look at the meds I am taking which include Azilect which is FDA approved to slow the progression of Parkinson's disease. This is certainly a drug to ask the physician about.

    Please keep in touch...

  4. Actually there are a few articles which follow this article. In one I wrote:
    "So I switched back to DynaCirc CR(R) 10 mgs a few days ago and my symptoms are already improving"
    We'll return to this article to add the links to the articles which came later as follow-up although all are listed in the index under Drugs-Medications and all references can be found through a search at the top of the page or at the top of the right column.
    The follow-up articles can be found:
    10/10/08 Nifediac vs DynaCirc
    10/14/08 DynaCircCr Followup
    2/09/09 Isradipine of DynaCirc?
    We certainly hope this helps. We've linked newer posts but not some of the older ones.

  5. My research indicates that amlodipine is highly lipophilic (fat soluble), crosses the blood brain barrier, and also has significant anti-oxidant effects. In comparison to isradipine, amlodipine also distributes to body tissues significantly more and stays in the body much longer (half-life of 35-50 hours vs. 5-11 hours). My wife has young-onset PD and I have selected amlodipine over isradipine for her. Best Wishes to us all.

  6. We're really glad to hear that the amlopidine is working for your wife. This should make a less expensive option than DynaCirc CR (controlled release over 24 hours)
    We had high hopes for amlopidine for Steve but he did not find it to be as effective for his symptoms.
    Your research shows that amlopidine should have been at least as good.
    For those who would like to read more about amplopidine and its use for Parkinson's:
    Please, keep us posted especially on the ways in which it has helped her
    Thank you

  7. Well, I'm not sure if amlodipine is helping as a neuroprotective agent, but my wife has held her own UPDRS-wise and symptom-wise over the past 2 years. Perhaps, she is still in the "Honeymoon Period", but only time will tell.. I think that all PD patients should as a minimum: Start domaminergic treatment ASAP to take the stress off of remaing neurons; exercise every day to improve neuroplastiscity; and reduce as much stress in life as possible. In regards to neuroprotection, I could go on & on.
    Everyone on this blog should be aware of the research by Dr. Eugene Mosharov et al : Interplay between cytostolic dopamine, calcium and alpha-synuclein causes selective death of substantia nigra neurons". Neuron 2009;62:1-12. Again, Best wishes to us all.

  8. Amlodipine looks like a dog based on "Brain pharmacokinetics and in vivo receptor binding of 1,4-dihydropyridine calcium channel antagonists."(PMID: 9395249).

    I've found that felodipine extended release once daily is as effective as nimodipine TID at reducing brain glutamate secretion, for a small fraction of the cost. I just have to put up with a bit of sympathetic activation since it has more peripheral action than nimodipine.

  9. Do you have data regarding the effectiveness of felodipine crossing the BBB ?

    Thanks !

  10. According to Astrazeneca, in animal studies Felodipine was shown to cross the blood brain barrier and the placenta.

  11. Does anyone have detailed information regarding the extent of penetration into the brain for each drug in this class (dihydropyridine calcium channel blockers) ie:
    nimodipine vs nifedipine vs felodipine vs isradipine vs amlodipine, vs nicardipine, etc ? A very interesting article appeared today in Medscape Medical News entitled "Some calcium channel blockers may protect against PD" (www.medscape.com/viewarticle/716103).
    I think we are all trying to get as much information regarding this subject as possible to benefit ourselves or loved ones.

  12. We'll be posting soon about CA channel inhibitors and will include a list of the calcium channel blockers which do cross the blood brain barriers

  13. I was surprised that the Ritz paper included lercanidipine in the useful bunch. It didn't work for me, while nimodipine and felodipine did. Farina, Targa, et al. (1997) found it didn't penetrate to the brain in animals. (My browser isn't letting me paste into this window for some reason, so just Google the names and year and the first link will give you a whole journal issue filled with lercanidipine papers.)

  14. PMID: 12714685 is an interesting paper about the idiosyncracies of nifedipine. It actually increases glutamate release. They rigorously ruled out a lot of mechanisms, and could only theorize that nifedipine made cell membranes more rigid.

    (Reminds me of the D4 receptor-stimulated phospholipid methylation that increases membrane fluidity and thus decreases NMDA receptor activity. See Deth's book "Molecular Origins of Human Attention: the dopamine-folate connection" on Google Books.)

  15. Lercandipidine (Zandip) does not "readily cross the blood brain barrier" which may account for the fact that it was found by Anonymous to be less effective. There is an implication that it appears that it does cross the BBB but perhaps too slowly to be effective because of the molecule (large) size.

  16. I was on Dynacirc CR 10mg/day for high blood pressure when I was diagnosed PD and started PD meds (stalevo, etc). Then my insurance wanted me to take Amlodipine 10mg/day to save money. Well, I noticed the change in PD symptoms within days: less rigidity, easier movement. I didn't think it was Amlodipine at first, until its side effect (palpitation in my case) made me switching between Amlodipine and Dynacirc several times. The reducing of PD symptoms in my case was related to Amlodipine, not Dynacirc. And from Dr. James Surmerier's publication, I calculated I need to take 150mg/day of Dynacirc to have the result for PD that he had in mice. I guess I would not have any blood pressure left if I take 150mg/day. Glad to see 10mgs of Dynacirc works for some of us - we do need individual medicines!

  17. Anonymous,
    You are so right about needing individual medicines to treat the person and not just the disease.

    Amlodipine as a 3rd generation of the CCB dihydropyridine class, might be expected to hold more promise for some. We are flad to hear that it is working well for you.

    I think that the fact that PD is a group of syndromes with broad variations from person to person means that what works well for some might not work well for others.

    It is also intresting to note your calculations on the potential effective dose of DynaCirc CR.

    It is even more interesting to see that your health insurer is involved in making productive decisions. If you had found the reverse - that DynaCirc worked better than Amplodipine - you would probably have needed a letter from your doctor stating the urgency to be allowed to continue the DynaCirc.

    Since you are proactive, that would not have been a problem for you in the way it is for some people. It is sad that many folks don't realize that just because PD can affect one's voice, doesn't mean that one can't exercise it for their own care.

    Thank you very much for experimenting for comparison and sharing this information.


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