Sunday, March 21, 2010

Exelon Patch Study

This post was published last week on the Alzheimer Reading Room blog.  Please go to the below link if interested in reading the comments or to visit the site.

Alzheimer Reading Room

Original post from 1/11/10

Today I took mom to her Dr. to be enrolled in a new study for patients with moderate to severe Alzheimer disease.  To qualify you basically have to be physically healthy, MMSE score of less than 12 I believe, not live in a nursing home, and have a caregiver willing to help you with the med and get you to the appointments.
Mom's MMSE score today was 10.  The last time she was tested (last summer) it was 12.  She had lab work drawn, EKG done (normal), and a mini physical.  We were there 2 hours.  She also has to have a CT scan which needs to be done this week.  I will have to take her off her Razadine 2 weeks before she starts on the patch so I will do that on the 14th and she goes back the 28th and if all the above tests (lab & CT scan) are ok she will start the new drug.  All patients in the study will receive the drug however there is a low dose group and a high dose group and we will not know which group she is in. The drug (low dose) is already FDA approved for mild to moderate Alzheimer patients so this study is to see if there is any benefit for the later stage patient.  The study lasts for 6 months with mom able to continue the medication (low dose) after 6 months if there is improvement.

I don't know if Lily will benefit from this but the medication she is on is not keeping her from gradually deteriorating so I thought why not?  Hopefully we will see some positive indicators and if not at the very least she is helping in the fight against this horrendous disease.

About 2 days after this post I found out Lily's thyroid level was mildly out of range (TSH-6) so she did not qualify for the study.  Her mini mental status exam was 10 which had dropped from 12 done sometime last year.  I had decided to put her in this study as I had noticed a recent deterioration in her mental facilities verified by her MMSE score.  Because of this I felt taking her off her razidine which  has to be discontinued for 2 weeks before starting the exelon was not such a big risk since she was no longer doing as well.

Lily's thyroid level is now in normal range and if all other results meet the study's requirements I expect her to have an exelon patch on next week. This will be our second attempt to get her enrolled in this study.

The interesting thing is that after her doctor increased her thyroid medication I started to notice Lily improving--not as confused, remembering more details, just generally more with it.  So after several weeks her thyroid level was rechecked and the TSH is now around 2 (normal range).  So we went back in to redo all the paperwork.  They also checked her MMSE (mental status) and she scored 12----up 2 points.  Fortunately the study includes those with a MMSE score less or equal to 12.  What I want to stress here is that 2 points doesn't seem like much but is really a big deal in the little things of everyday life with Lily.  And that is definitely attributable to her thyroid level.

So for any of you caregivers out there make sure your loved ones have their thyroid checked once per year.  Ideally the TSH should be less than 3.  Even if it is in the high normal range (4-5) I would venture to encourage your doctor to try thyroid replacement medication to see if a difference can be seen.

I have to say I had second thoughts about enrolling her in this study because the only reason I decided to take the risk was because she was deteriorating on the razadine/namenda combination.  However, at the time I made this decision I did not realize her thyroid level was out of range which is what was causing the deterioration. I actually almost backed out.  I talked to her Doctor who said they had  been seeing some good results with the exelon and she thought it was worth the risk so I agreed. However the same day we went back in to redo all the paperwork I came home and had a post from someone who said that her mother did terrible on the exelon which made me again question my decision.  However, I know not every individual reacts the same so I am hoping Lily has better results with it.

I will keep you posted.

1 comment:

  1. Oh my what a process. I hope the patch works well for Ms. Lily. And, I agree that 2 points on the MMSE makes a difference. Kelly, during the 2 weeks off Razadyne - wonder what changes you might expect? I'm scheduling Chrissy a thyroid test and if her level is less than 3, I will speak to the doc.