Fibro study

[Guest guest]

I had an appt with a rheumy in Seattle yesterday to see

if I qualified for a fibro study. I have such severe

pain at times, and nothing seems to help that I thought

I'd see what this was all about. So I went for a 4 hr

appt. What I found out was very interesting, esp since

there isn't much out there that effectively treats fibro.

The study is being done across the country at major

medical centers and is being conducted by Eli Lily. The

drug is called Duloxetine, which is very similar to

Effexor, but more like an Effexor Plus. It is an

antidepressant which works more on norepinephrine than

serotonin. 200 people have tried it already and have

had very promising results with decreasing the amt of

tender points, stiffness, achiness, fatigue, anxiety,

and depression. It works through pain pathways instead

of typical neurotransmitter pathways. I currently take

Effexor for depression and was told that if Effexor

works, then I will probably respond very favorably to

duloxetine. I had to undergo a psychiatric exam (MINI),

a physical exam by the doc, a H & P, and an EKG. I have

to come back next wk to finish the paperwork and have

blood drawn and urine obtained.

The catch, though, is that there has to be a washout of

all other meds, including my sleepers Ambien and

Klonopin. I have had severe insomnia since high school,

and I don't know how this will pan out. So, at this

point, I'm torn between wanting to partake in the study

and saying no to it because I can't see myself not

sleeping but more than 2 hrs/night for 17 wks (the

length of the study). Of course, there is the chance

that the med can regulate my sleep patterns and I will

be able to sleep okay.

This particular doc is very involved in studies related

to fibro and CFS. Apparently a nationwide study was

done about 8 months ago on a med also used to treat

fibro and CFS. It did well in the studies and is due to

come out in spring. I was given a list of the stats

that they had. Of 50 pts involved in the study, 78% had

a significant decrease in their symptoms with min side

effects.

For those of us where nothing seems to help our pain,

these new drugs may be promising. Also, there is

apparently a national registry of fibro sufferers who

provide a blood sample and this company then runs tests

to determine if fibro is genetically linked, medication

induced, or falls under the category of " other. "

If any of you are interested, and you are near a major

medical center, you might want to contact the research

dept of the hospital and see if they have been chosen to

participate in the study.

I will keep you updated as to what I decide to do about

joining the study.

e