fibro research studies--drugs not yet on market

[healthbee]

I was wondering how the community of fibro sufferers perceives clincial trials. I work at a private research site that does multi-specialty research, and it would seem that people would be interested in participating in a study that offers a totally novel drug for fibromyalgia, in its last phases of research before it hits the market. however, we are having difficulty finding patients and I was wondering if this is partly due to fibro patients having negative experiences with doctors. anyone?

[Sweetgirl53]

Can you contact those of us who are interested in your company's research medication?  I know of no other way to get in touch with you.  Thanks

[meki]

OK - here's my take on this...

I started off having horrid symptoms - which doctors tried to diagnose me with everything from flu to cancer... Only after years of trying to find something, a doctor realized my ALT and ASTs were up and ordered a hepatitis panel.

Turned out I had Hepatitis C. (No risk factors known).

Anyhow - I did the Interferon / Ribavirin treatment combo for genotype 3a.

During the treatment I developed bone pain, muscle aches and joint aches... It felt like connective tissue pain.

So my GP gave me percocets - which I kept getting upset about --- find the cause of the pain --- don't just hand me pills.

After a year post treatment - the pains still lingered, a blood draw was done and my rheumatoid factor came out exceedingly high.

Which sent me to an internist/rheumatologist.

Which took a look at me --- listened to my complaints about extreme pains in my muscles, fatigue and other symptoms ---- and basically told me I had Neuropathy.

Which explains just about everything.

She gave me Lyrica - which made my world feel tilted and made me feel like I was crab walking sideways plus a headache and nausea.

Now - I've also had: Valiums - which make me grumpy... Lorazepam which wakes me up but calms me down a little. Ritalin which puts me to sleep and makes me very hungry, Coffee which makes my heart beat fast, but makes me tired and Percocets which don't get me high like my friends say it does to them, but it does take my pain away - Ambien which keeps me up wide awake.

So this tells me that I have adverse reactions to medication.

And this tells me I probably have Interferon related neuropathy - and possibly fibromyalgia.

GREAT.

Now you ask why you might have problems finding patients willing to undergo trials for a drug.

Hmmmm.....

Lessee --- many doctors over many years had a hard time finding Hepatitis C.

Many medicines later - I have massive pains...

I'm now taking ULTRAM 200 ER - plus 100 ER... daily. It seems to work with no major side effects - I'm playing badminton now and my quality of life has improved.

I dunno if I am willing to try any new medicines...

As I feel that the pharmaceutical companies make more money off the TREATMENT --- and not finding the CURE --- that the side effects of the TREATMENT can cause more problems ---- which lead to using more pharmaceuticals.

So it's like that vicious cycle --- where the snake is eating it's tail.

Since no one really knows what FIBROMYALGIA truly is --- or Neuropathy... Or how to cure it...

It's great that there are medicines that can help us improve our lifestyles.

But with those medicines - sometimes too high a price must be paid. For example: If I had not taken the Interferon/Ribavirin combo therapy, I would still have HCV, which probably was killing me... But since I did take it --- it caused other problems --- or excaberated them.

Many people with FIBRO have been passed from Doctor to Doctor --- no one believing that they feel a VERY REAL PAIN --- or multiple pains...

They've run through a lot of doctors --- a lot of tests --- a lot of medicines --- a lot of pain... a lot of problems...

And that can bring depression, the feeling of defeat --- and a sense of hypochondria --- when something REALLY is wrong.

And that... is why... you're having a hard time finding folks...

At least from my perspective.

Is this new medicine a cure?

Will it stop permanent pain from happening in my muscles, bones, tendons?

Will it cure me without massive side effects?

Will I take it forever?

Or just for a short time?

If I take it forever - how much will it cost or how will it effect me?

Will my insurance cover it?

How much is it without insurance?

Will it make things worse in the long run?

And so on.

It's great that there are new medicines out there in the pipeline that can help others.

however... there are those of us - who are just about to give up with the medical world... And pain sufferers are probably the ones who want to give up the most.

Because they've been through so much --- and it's taken forever to get someone to know that.

Meki

[bella686]

I personally would be willing to try anything that would help me.  I think personally I have had a hard time trusting Drs.  I went to several who tried to diagnose me with anxiety problems and depression before I finally found a Dr. who would listen to me and try to make me better.  How do I find out more about  the drug and qualifying for the study?

[Sweetgirl53]

I would be more than happy to be a part of research programs but from the patient's standpoint it can be very difficult to find these programs.  How does your company reach out to us Fibro patients?  As I said...I'd be willing to try anything to overcome the fatigue and pain.

[197starr]

I am happy to hear that something is being made to help us with ADLs!! Also where and how do you qualify?

[patsy10]

I qualified for a study using Milnacipran but I decided not to do it.  I don't really want to take medications.  Also, it seemed like it would be an inconvenience as well.  I'm also not much of a believer in treating symptoms.  I'm a believer in treating the cause.  If there was a study to find out the cause I would do it.  This is just how I feel about it.  I'm sure other people may feel different.

[healthbee]

No, it's Reboxetine

[patsy10]

Is the drug Milnacipran?