Inventory Poll of "in-Common" characteristics for

[cjbrooksjc]

All: This has been on my mind for some time: Has there been a poll taken of the characteristics of our forum population? The only things I'm sure of is that we are not all American citizens, not all black, and not all women. I have a history of alergic reactions, have had Malaria, Scarlet Fever, German Measles, am Hypothroid, and German/English, etc. This interests me, and I was wondering what everyone else thinks about the idea. I find information to be most valuable when trying to puzzle out something complex. Who was it... Florence Nightengale, who used what she knew about muscle damage to formulate a treatment for Polio? It was only information, and Lay though she was, it worked! But, perhaps this leans uncomfortable into the unvisited, personal space of some, OR perhaps it has already been done? Do we already have some sort of "characteristics inventory"? Should we build one? I would be happy to compile the data; out of network, if necessary. Thoughts?


Regards,

Brooks

[harneyn]

I too have wondered about this. Why me????

Guess one would need an inventory of medical issues and drugs / supplements of each that experienced adverse effects from statin.

A..

[cjbrooksjc]

harneyn: We'd need to start by building a matrix of topics first: Age, sex, race, medical history. It's a daunting task, but we could do something elementary to begin. The hard part might be getting buy-in and agreement from the contributors. Information is valuable; not only to those who use it for good, but to those who may not. AND this is not a secure site for personal data. I may be tilting at windmills, but I think we could learn from the exercise, and learning is what I want to do. I don't have many answers - I'm simply tossing this idea out for discussion.

Regards,

Brooks

[BDavis]

Brooks,
I think it's a great idea. I think the more we know the easier it is to see, why. The task is huge and the privacy issue will be the most difficult part.
B

[cjbrooksjc]

B. Thanks for responding. We'll just have to wait and see what develops.

Regards,

Brooks

[harneyn]

I have been thinking about this. I can do an Excel spreadsheet layout, but need to find out more about online updating.

It would have to be hosted somewhere... I have space on my ISP's site. It could be passworded.

Identification could be by number - each entrant would have to remember their own number for privacy.

Will be away for a week so I will think more, but cannot research easily.

ID, Sex, Age, Medical Issues / Conditions before Statins
Statins started, Product, Dosage, Side Effects and so on. Add some column headers as you think of them..

Each of us has similar and very dissimilar effects. I read through the posts, and think did I write that??

I am very interested in the why of these effects, leg / muscle pain in my case. My legs are better with CoQ10 and L-Carnitine. Thought I was much better this week, and I developed wicked low back pain. It goes on....

Along with the why, it disturbs me greatly that no MD is able to help, or even commiserate even though the statins are handed out like candy.

And how do these effects last so long. I took only 4 days of 20mg Zocor. If the effect is so great and long lasting - six months now for me, I wonder why one has to take the statins daily for life?????

Lots of questions - no answers!

Cheers,
Ann

[cjbrooksjc]

Ann: Thanks for your involvement and interest. For this inventory to provide us, and others like us, with any sort of useful benefit it would require involvement of many of the regestered forum visitors. That doesn't seem to be happening and for what, I'm sure, are very valid personal reasons. Let's give it a chance to percolate in everyone's mind (a couple of weeks) and take another look at the interest level.
It may be that this forum is not the right vehicle. I'm simply interested in doing a mass overlay and looking at the statistics that develop in common for the group. Also, since I've probably never had an original thought in my life, it has likely been done by someone somewhere already. Let's wait and see what develops.

Regards,

Brooks

[catspajamas]

I am very interested in your proposed project....I am participating in research being done by the Univ. San Diego...they are the only ones I have run into so far that are interested in the effects of statin use...I must compliment you on this forum...I don't feel so "alone"...I had a supposedly cholesteral specialist that laughed in my face when I told him what statins did to me...he tried to give me yet another one...What I have learned, I have had to research on my own...Here I am 68 yrs old and will have to suffer the pain of periferal neurapathy the rest of my life...all in the name of zocor.....

[cjbrooksjc]

catspajamas: Your comment: "I must compliment you on this forum" prompts me to confess I am simply another sufferer; not the Spacedoc Forum manager or anything like that (if that is what you were thinking). I am smlply another, curious Lipitor/Zocor casualty. Thanks for your interest though and for the kind words; that makes four of us now... only a few hundred (or so) to go.

Regards,

Brooks

[mgguy]

Catspajamas, how long have you been off statins and still having neuropathy? Have you given up on the possibility of this ever healing? If so, why? The UC San Diego Statin Study director told me that it can take an average of 10 weeks to several months before starting to feel any better after discontinuing statins. I am hoping to see some improvement soon after being off Lovastatin for 6 weeks. I really don't want to live with this burning and stinging in my feet forever.

[catspajamas]

I have been off of statins 5 years come June.....not very encouraging is it?I was on zocor for 4 years so maybe it will take a long time to "heal"...but I really don't think my feet will get any better....I wish I'd of known about this site back then...maybe if I'd of gotten on the coq10 and l carnitine sooner ....who knows?....I have been taking benfotiamine...My old general practioner says a lot of b vitamins help nerve regeneration so...at this point in my painful life anything is worth a shot.....thank goodness for darvacet....I am lyrica but I don't think how much it helps justifys the cost(213$ a month)...I m looking into a pain management clinic...so will see...