Thanks, "Dr Jorge" ......I reached those conclusions anecdotally from my
own experiences, and now you have confirmed my belief. I shared my feelings
in an e-mail to the list on 12June responding to a posting by Dolores
Buente. I would add to that by remarking that the neurologist who initially
diagnosed my PD told me I could just take some Benadryl. When I said that I
had just read about some "new" (this was nearly 4 years ago) PD
medications. He quickly wrote an RX for Eldepryl and I left. I then looked
up this med and printed off the Mfgrs. documentation, about 15 or so
pages. I read it carefully, and while there were many unfamiliar medical
terms, I was able to sift through and highlight the significant
conclusions, and study the statistics from their double blind trials. I was
amazed when I discovered that I had highlighted quotations in various
contexts and on several separate pages that were redundant in that they
stated that Eldepryl (selegiline) had been shown to be effective in the
treatment of Parkinson's Disease WHEN (my highlight and paraphrase) USED AS
AN ADJUNCT TO DOPAMINE OR DOPAMINE AGONISTS. They were careful to word
these statements in the positive tense. They didn't say it was shown NOT
effective unless used as an adjunct. That was my first realization that you
had to carefully read and interpret these pharmaceutical documentations.
When I went for my next appointment I took the complete documentation with
my highlights in yellow marker and presented it in a very low key manner,
asking the doctor if he was aware of what this said. He read it, looked
flustered and said that he was not aware of that, that he knew of animal
trials. I said I had read about Requip as being the new drug. The complete
mfgr documentation was not on the Internet, and I had just seen news
reports. He wrote an RX for Requip and I left after finding out that the
MRI scan he had me have did not show any lesions or turmors. I probably
judged this man too harshly, but I then had my regular physician make an
appointment for me with a neurologist at Ochsner Clinic in New Orleans. I
waited for 3 months for a consultation. During that time I had no
medication and my left hand and leg tremor was worsening. The doctor at
Ochsner's prescribed Requip, which I took exclusively other than the 2000
units of Vitamin E daily that he recommended. I gradually, over the next
year increased the Requip dosage up to 16 mg/day. It was somewhere in that
period between 10 and 16 mg/day that I began to experience the really
annoying side effects, sleep attacks, swelling of ankles and calves,
stiffness in legs and back so it was difficult to put on sox or tie shoes,
nausea, insomnia, mild hallucinations, flashes of light in my darkened
bedroom. Then the dry, sticky mouth began. Eating became a chore not a
pleasure. I spent 13 days in hospital with aspirant pneumonia. I continued
with the Requip. At one visit to my neurologist I asked him about the
terrible condition of my mouth, for which I had been treated for candiasis,
been sent to an oral surgeon for a Sjogren's biopsy, then had every blood
test possible for Sjogren's and other rheumatoid possibilities. They were
all negative. The diagnosis was a side effect from the Requip. My
neurologist said he hated to take me off the Requip, so I agreed to try it
until my next quarterly appointment. At that visit, I told the neuro I was
ready to try something else....the other side effects were almost
unbearable, but the mouth problem really was. Then too, I had fallen asleep
at a traffic light and woke up startled, wondering where I was and what had
happened. Fortunately the light had not changed to green before I roused.
It was a frightening experience.
I started on carbidopa/levadopa. After 6 months all the doctors thought I
should be clear of the Requip. All of the effects had disappeared but NOT
the terrible mouth problem. The PD symptoms, tremor in left hand and leg,
slight balance problem, insomnia, etc are still with me of course but are
relieved by the Sinemet for an acceptable "on" period. I have been to
every Doctor I thought might help the problem with my mouth, IM
specialists, peridontist, oral surgeon, ENT, rheumatologist, and even an
ophthamalogist for the Schimmer test for Sjogren's. (My eyes are not dry) .
Their attitudes have run the gamut from "It's the Parkinson's, you will
just have to live with it", to a concerned opthamalogist, and my super nice
rheumatologist who says it is a puzzle to which he would like to find the
answer. He says the symptom my mouth demonstrates is very Sjogren's-like,
but no one I have found has had the same problem I have. Here it is, Dr
Romero.........My mouth can be very dry at most times, and normal saliva
seems stimulated by chewing gum, but at the same time saliva glands excrete
a thick, gummy saliva that coats my teeth, tongue, and the oral cavity in
general. When I eat, food particles adhere to my teeth, etc. and the thick,
"rubber cement"-like saliva forms in my mouth. I use Biotene toothpaste,
tried Biotene mouthwash, use Water Pik, electric tooth brush, tried every
mouthwash known to me, one recommended by the ENT man at Ochsner's called
Al Ka Lol. The Sjogren's treatment for dry mouth, Salogen, or (I think)
pilocarpine, generates enough normal saliva that I drool at night, but the
thick, dried "rubber cement" that coats the inside of my mouth is still
there in the morning. I have just about given up the battle. The
rheumatologist says he has not, and is planning on contacting the authority
on Sjogren's at Univ of Texas at San Antonio. That is, I think, my last
hope. I sometimes think that this condition was begun by the Requip and
that it is now a chronic and permanent condition. I have written Dr
Lieberman and he said he had not heard of a PD condition like this. If
anyone seeing this has had anything similar, please say so.
In the meantime I will keep trying to see the humor in all this and life
in general. I really would see much more if all I had to contend with right
now were my somewhat mild PD symptoms.
I hope this didn't bore you and I hope you could see it through to the
end. I only wish I had never tried the dopmine agonist.
Regards and thanks for writing to the PIEN list.
Don A
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