Microbid has a significant risk for some people.

Elaine, you asked how we handle PN. I am afraid it handles us!
Some of us are fairly stable. After the initial shock and fear, you get used to a new normal. Medications like gabapenin are pretty universally prescribed as the first line of treatment and work about 30-35% of the time. They rarely cover all the pain so there is some measure of disability involved. Activity makes the pain worse for many people so they become more limited in what they do.

Some of us have progressive neuropathies. These are primarily hereditary and is why, I think, Kitt asked if anyone in your family has it. These can be evident in youth as crippling or just clumsiness and poor coordination, high arches, absent reflexes. They may not set in until middle age. Whenever they start, they do get worse and there is no treatment. This is what I have. It is primarily axonal and I have definite weakening of the muscles in my hands, arms, feet, and legs. I am experiencing a set back currently, and could happily stay on the sofa all day. Shopping is exhausting. Going upstairs, showering and dressing requires a nap.

I am still coming to terms with this new normal. I don't like it. My mother, who neither knew nor cared that I had this disease, used to call me lazy. I have prided myself on being the Martha Stewart of homeschooling mothers, raising five children, just to show I wasn't lazy. Now I can't do much of anything and the feelings of worthlessness are overwhelming. My husband is incredibly supportive, but he can't fight the demon of childhood conditioning and I have been told by my doctors that I am a poor candidate for therapy. My justification for living came from what I could do for others, and now it is mostly gone. I am not coping well right now, but I probably will adjust.

The people who have it hardest are the ones whose family do not believe they are in pain and disabled. From reading here this seems more common than it should be. Like Debi said about her husband accepting it only after her skin biopsy results. Unfortunately some people do not get hard test results that correlate with their level of suffering and this makes it harder.

Everyone is a little different, but a common trend seems to be that while the symptoms may not improve, our ability to cope seems to improve.

This really interests me, as the cause of my pn has not been discovered yet, and I have been on Macrobid probably a dozen times in my life. Actually, my symptoms began shortly after taking it the last time . I just found this on a website for the medication:

Neuropathy:

Peripheral neuropathy, which may become severe or irreversible, has occurred. Fatalities have been reported. Conditions such as renal impairment (creatinine clearance under 60 mL per minute or clinically significant elevated serum creatinine), anemia, diabetes mellitus, electrolyte imbalance, vitamin B deficiency, and debilitating disease may enhance the occurrence of peripheral neuropathy. Patients receiving long-term therapy should be monitored periodically for changes in renal function.


My creatinine levels are always abnormally low.
How can I get proof that this is the cause ? Are doctors even open to the idea ?

Sorry for making this about me, but I didn't want to start a new thread and saw that your topic was about this medication.
Best,
Silver

There are two ways of reporting creatinine.

One is the amount that appears in the urine (called the clearance).
This is done to see extent of filtering capability of the kidneys. A low figure here is bad, meaning the kidneys are not working right.

The other test is on the blood serum... it is called just creatinine.
It is taken and shows how much creatinine is in the blood needing to be removed. A low figure here means your kidneys are functioning well.

When you read about creatinine CLEARANCE this involves the filtering capability of the kidneys. It is often referred to in article about drugs, because drugs are removed from the body thru the kidneys. Poor clearance means the drugs build up in the body. Then their doses must be adjusted to account for this or that drug not used at all...a doctor's decision.

This link explains what "low" blood creatinine levels might mean:
http://www.webmd.com/a-to-z-guides/c...earance?page=3

http://www.rxlist.com/macrobid-drug/...recautions.htm

Here is the link to the information I posted.


Also, it looks like I was referring to low serum levels from bloodwork- some doctors saw it as a sign that my kidneys were processing too much, some said this means I have an excellent pair of kidneys, and a urologist said that it may be because I am very small with little muscle and do not eat a lot of protein. So it makes sense, but interesting that each doctor had a different opinion-just to make things more confusing .