Re: Folic acid and Sinemet

[Guest guest]

I have been following the discussion this past week regarding different meds

RLS sufferors are prescribed and how they get thing to what works best from

them. I've only been taking meds to treat my RLS for about 6 months.

However, I was on a number of the other meds (Klonopin) that some of you are

taking several years ago for a mysterious seizure condition.

Anyway, my doc started me out on one (1) Sinemet 25/100 tablet every night

about 30-60 minutes before retiring. This worked about 2 months, then my

restless leg symproms started to pick up and get worse during the daytime.

In November, I interviewed a new PCP (primary care physician) who suggested

adding Folic Acid to my diet to help curb the RLS. I bought a bottle of the

supplement at the grocery store for under $5 for 100 tabs at 800mcg

(micrograms) each and began taking them daily.

In December, I told my sleep doctor the Sinemet was not helping at the

present one tablet and I asked if I could increase it. He was quite hesitant

and wanted to be sure my symptoms were beginning earlier in the day before

agreeing. He then instructed me to take one tablet around 4-5 p.m. and a 2nd

the same time as before. It helped for a couple weeks then things were even

worse than before the 2 tablets.

I was going crazy by January and exhausted from all the movement, and those

unbearable squirmy sensations were murder and driving me crazy. I then read

something from the Internet about reaching a point of Augmentation with

Sinemet where it completely loses its effectiveness. I mentioned this to my

prescribing doctor to see if there was something else. He then called in a

prescription for Mirapex, which is becoming routine with my insurance, is

not on the covered drug formulary. I did not have the $56 to pay for a

30-day supply just to see if it would work. The pharmacist said she called

my doctor's office with the news but he refused to put forth the effort to

justify the med to the insurance company as an exception. That pissed me

off. (Sorry for the language but this has been an unbelievable week with 2

visits on Monday to the ER and doctors shrugging their shoulders and sending

me on my way.)

The PCP I interviewed in November happened to be the one I settled on,

because she was honest and sincere during the interview. The other doctors

wouldn't spend 5 minutes with me or refused to write any prescriptions for

pain medicine, and even push me off to other doctors who may be more patient

with my medical issues. Anyway, I had my annual physical with my new doctor

the first part of February. I told her I had started taking the Folic Acid

as she recommended in November, but it didn't seem to be helping. She said I

probably needed a higher dosage.

The supplement bottle says the 800mcg is 100% of the normal dietary intake,

but she said, I may need as much as 3-4 mg (milligrams) a day to see

improvement. She instructed me not to increase all at once but gradually

build to 3-4 tablets per day. It's only been about a month and I am taking

2400mcg (2.4mg) per day and am seeing a slight improvement. I'm sure I need

more time to be sure. Of course, the improvement I think I'm seeing could be

because all my other symptoms and the intense chronic pain I have been

experiencing for the past month far outweight the RLS symptoms and issues.

Well, I could continue, but I must get back to work if I plan to get off

work before 8:30 p.m. like last night. I may not reply to the group very

offen, but when I do, I certainly make up for it in length of response. Take

care all and let's hope for a long and restful weekend.

Michele N., 44

Hurtin' and Draggin' in Lafayette, CO

> ----------

> From: mainard@...[sMTP:mainard@...]

> Sent: Friday, March 05, 1999 1:00 PM

> To: rlssupport (AT) onelist (DOT) com

> Subject: Folic acid and/or Iron

>

> From: mainard@...

>

> Has anybody heard of Folic Acid and/or IRON to treat rls? COCO

>

> ------------------------------------------------------------------------

>