Re: low tolerance for medications

[Guest guest]

Is it common for CMT people to have a low tolerance for meds?..... also...I'm

always so cold compared to everyone else.

Thanks.

Geri

[Guest guest]

Geri,

Not quite sure I know what you mean. Do you mean side effects, or that

very little of a medication is required? Or do you mean lots of

medication is required, but very little relief. Or do you mean having

allergies to certain meds, or info about the meds toxic to CMT nerves?

~ Gretchen

[Guest guest]

I think I understand what Geri is asking. If a medication has side effects, I

will experience it. I cringe every time a doctor suggest a new medication,as it

will become a roller coaster ride of side effects. From what otherfolks have

mentioned, this seems to be common with CMT.

I too am always cold. It can never be too warm for me.

O

[Guest guest]

Sorry this is so long but the only way I can explain!

This is my problem...

My doctor has given me meds that just don't work for me...I so very

sensitive...and to get a doctor to hear me ..or even care now that is something

else!!

I told my doctor I could not have sulfur....he put me on a high blood presser

med...I took it! My legs broke out so bad I haven't had my braces or shoes on

for a year...Turns out the meds he gave me was not for people that had trouble

with sulfur!

He also has me on meds that cause muscle weakness,(LIPITOR: couldn't manage to

get enough leg strength to get off the )... leg swelling,problems with

breathing and causes cold hands and feet.my temp was *96!...also gave me a water

pill $60. a bottle that does not have sulfur in it but says...DO NOT TAKE if you

are allergic to sulfur!! Meds also caused restricted urine out put....That also

happened!!

I thought I was dying...my breathing was getting worse and worse...my legs are

as big as logs...I have gained tons of weight and I'm cold all the time!

I stopped taking some of the pills...my breathing has gotten so much better...as

well as my legs, muscles not as sore..( couldn't even comb my hair..shoulder

pain a muscle restriction was so bad)

He is sending me everywhere for very expensive tests...not even looking at the

side effects of drugs i don't think!...I blame myself because I'm sensitive to

meds....I have always had a terrible time and that is not his fault.

I have been so sick for so long and I'm feeling so much better....but I worry

about my blood pressure ...just taking one pill for it now and doing

better....but don't know what to do or where to go for a doctor....I worry so

about meds and side effects.I had such a hard time breathing thought it might be

CMT....Im afraid the doctors are going to think Im crazy!!!!!!........

Geri

[Guest guest]

OK Geri, I get it.

First, I found out the hard way, like you, that I am allergic to

sulfa medications - years ago I had a bladder infection and my

Internist prescribed one of the Sulfa drugs. Sure the bladder

infection cleared, but almost overnight I had increased CMT

symptoms: falling, no balance, increased fatigue and since I had to

take the medication till it was gone, I knew something was wrong. I

went to see my Pharamacist, who looked up some of the " side effects "

and " contraindications " , sure enough that particular med was known

to increase symptoms of peripheral neuropathy. I quit taking it and

reported this to my doctor, who gave me something else for the

duration.

As for Lipitor, it is known as a " statin " medications and research

has proven " statins " can make CMT worse. Perhaps you can " educate

your doctor " as we all have to sometimes, and find some natural ways

of reducing cholesterol. We've discussed " statins " and cholesterol

before, so you might want to go through our Archives for past posts.

Sorry I can't help with the Blood Pressure medication issue, but it

sounds to me like you and your doc have a big communication gap.

Don't be afraid to speak your mind or find another doctor,

preferably one that is familiar with CMT.

Also look in our Files for Medication Alerts and Breathing info.

Yes, some people with CMT do have respiratory problems.

~ Gretchen

[Guest guest]

Hi Geri,

This post is very interesting to me as I have been wondering the same thing. My

17 year old son was diagnosed with CMT in December 06. He too had a reaction to

sulfur - very severe and ended up in the hospital. Prior to this he had

allergic reations to other classes of antibiotics and our doc suggested having

him tested for drug allergies. It came back that he is allergic to ALL

antibiotics except doxycycline. There are other " classes " that he can be

tested for when he is 18.

If I were you, I'd get another doctor. There are some really good ones out

there.

Good luck.

Carmella

[Guest guest]

I don't really think having CMT causes allergies to meds. I have a very close

girlfriend who does not have CMT and she's allergic to almost all

antibiotics.This is just my 2 cents worth of an unprofessional opinion too.

Barb

[Guest guest]

People with CMT do have a lower tolerance for medication. It hits our blood

stream harder because we don't have much muscle to absorb the medication.

[Guest guest]

Hi Geri,

Yep you are perfectly normal for someone with CMT.

Slower circulations makes us colder and less muscle mass makes us sensitive to

medications.

[Guest guest]

If there is a side effect I will find it. Even side effects that surprise the

pharmacist.

[Guest guest]

Oh me too ....but I'm wondering if my doctor believes me! Some meds will be

ok for a few days before it hits me.

I get angry that the doctors don't look at the side effects. Esp. when the meds

cause muscle weakness...just the very thing I need!! So many I have trouble

with......

Did you have to train your doctor or were you guys lucky enough to find a good

CMT doctor?

Blessings

Geri

[Guest guest]

Carmella,

I think I'm going to have to have the same testing you son had. Thanks for

telling me about it.

Geri