Re: Deborah and meds, side effects

[Guest guest]

Deborah,

The 4 Sinemet 50/200 per day are within the range of 1000 mg per day

that I told you about. Charlotte NEVER responded well to the Sinemet

CR pills and we experimented (with doctor's consent) on Sinemet usage (as

Jim and Peg have also done). Charlotte was most happy

with a Sinemet 25/100 (normal) every 3 hours during the day (7 & 10

AM, 1, 4, 7 PM a half 25/100 at 10 PM and a CR 50/200 at bedtime (11 PM).

I don't remember Peg 's regiment, but it was a mixture of CR's and

half normal 25/100's. Both fell within the 1000 mg per day

limit.

Charlotte never took steroids, so I have no experience in that area,

and that may be why she had none of that type of pain. We kept the

house between 71 & 73 degrees F year round as Charlotte had problems

with body temperature also. Adding blankets to regulate how she was

comfortable was also used as a method of regulation based on comfort level.

I am not familiar with the Medrol. Were you warned not to take

it near taking the darvocette n-100 and Darvon? You said you take

the darvocette n-100 and Darvon PRN. I hope you do not take them

daily, have you tried something like Baclofen or Klonopen (??spelling -

help me out someone who takes it) for muscle spasm. It looks as if

you only tried Neurontin for the pain. I am glad you are nearly finished

with the Medrol as that lowers your resistance to infection - not good

for MSA.

The Pepsid is for acid reflux and is normal along with Zantac, Prevacid

or Prilosec for MSA patients (many are now using the Nextus).

To me it is better to experiment with one new med at a time rather than

stick to meds that may already be adding to some of your probelms.

Have you decided that you do not trust your doctor and therefore do not

tell them about all these problems???? That is the worst thing

you can do as it will let serious side effects multiply. Taking darvocette

n-100 and/or Darvon or Medrol on top of an antibiotic could cause problems

depending on the antibiotic. If one doctor gave you the darvocette

n-100, Darvon, or Medrol and another gave you the antibiotic - did they

know you were taking it? You need to have ONE doctor know about ALL

your meds AT LEAST. It is best to take a list of ALL meds you are

taking (and supplements too) with you to ANY doctor every time. You

also need to read the info sheet that comes with every new RX and tell

the doctor if you get any of the side effects (or have any new symptoms)

once starting a new med. It sounds as if the Medrol is being given

for Pain.

You mention "but the reactions that I get to medications have left

me in a state of learned helplessness", but do you really know about

the meds you are taking even now? What are the side effects of each

and do you have any of those side effects? Try to read about them

and answer honestly - then talk about each side effect with and

see what he has to say about the possibility of you having a particular

side effect. For top notch care, You, AND the doctors must

become a team. Honest communication is a big part of teamwork.

Take care, Bill Werre

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Deborah Setzer wrote:

I've tried to think of everything to try but

the reactions that I get to

medications have left me in a state of learned helplessness.

I am no longer

willing to experiment with meds the doctors think might be worth a

try

because the outcome has been hives, hospitalization and torture.

I've just

reached the point of I QUIT! No more!

Bill, does this answer your questions adequately?

Hugs,

Deborah

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