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Discussion Starter · #1 ·
the other day I was driving and I heard this lady on the radio saying "here Lupus Down Lupus" And it goes on to saying she lives with a wolf named lupus its for an advertisement for a study they are doing for an experimental drug therapy for lupus. Has anyone else heard it, or maybe its just my area? I am outside of Houston, Tx. Next time I am in my car I will look for the website I wrote it down and then I will post it!! Let me know if anyone else heard it or knows about a trial!!
Thanks I was thinking about trying it but I am mediphobe I hate taking what I do take let alone something that may make me sicker due to side affects and not the lupus!!
Look forward to hearing from you soon!!
 

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Hello Laura

That's wonderful that they are advertising for participants. There are so many drug trials under way at present it is truly heartening to think that treatment choices might be much better in the not too distant future.
It would be interesting to know which one it was

Here's a list of trials
http://www.clinicaltrials.gov/ct/search?term=lupus&submit=Search
Cheers
Clare
 

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Discussion Starter · #3 ·
WOW!! That is so interesting thank you for sending that link!! I looked for the name but didn't see it I will have to find it and see if its on the list. Have you ever done a trial? Would you? I wish I could but I think if the person is not mentally able to do it then it won't be a good result for that person, I hope that made sense!!
Thank you for the link!! Awesome!!
 

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Yes I participated in a study of HRT in post menopausal women with lupus to see if it triggered flares, the SELENA study in the USA. I took part in that because I was having awful post menopausal hot flushes and at that time HRT was seen as the miracle with the possible side effects downplayed or not fully realised. From the personal point of view I found that it was definitely not indicated for me lupus wise and I had no reason to take it for the other benefits.
So I withdrew about half way through.

I was asked to participate in an experimental drug trial for SLE nephritis which I don't have, but it happened that the drug had incidentally brought a great improvement to the discoid lesions of a participant.
I declined that, first because it involved injections and regular monitoring and I couldn't commit to being there regularly for several months, second because potential bad side effects weren't well known, which was the other half of the point of the trial. I can't remember what stage trial it was.

I preferred to live with the devil I know. If I had lupus nephritis that hadn't responded to other treatment,or felt that I wasn't getting good enough doctoring I expect I would have felt differently.
Another problem with that that particular trial was that if it had worked there was no guarantee the drug would continue to be available until it got FDA approval. How galling would that be. :(

More recently I was asked if I would like to try Cellcept for my skin lupus because they have found it's proving helpful for some people but I just didn't feel like it at this point. Maybe in the future I will because the side effects are reasonably well known.

I am pretty sure that some people, especially perhaps in the USA, participate in trials because they hope to get better quality of health care at least for a time. You do get to see experts for free ! And are very closely followed. You get to know the doctors and the team very well and these contacts just might come in useful.


I would have liked to participate in trials of an new formula of an established drug - they hoped that the worse side effects would be eliminated or reduced, but I wasn't eligible because I had taken the original.

Studies and trials have all sorts of eligibility requirements because they want to get as similar a group of participants as possible.

If you see a study or trial listed that might interest you, ask your own doctor about it and contact the researchers for further information. There's information on line about all aspects of participation (eg LFA articles), what questions to ask and so on. There is usually a lot to think about and discuss.

However it is a good feeling that you might have helped others and simply increased medical knowledge. It is often hard to get the funding for trials and studies and if they do it isn't always easy to find sufficient numbers of the right sort of people who can make the commitment of time.

:)

Clare
 

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Discussion Starter · #5 ·
Awesome replies thank you!! Although I don't think its for me, I would love to help them find a cure or something that makes life easier for all of us!! Maybe this information will be useful to other more medication tolerant!! I hope it does!!
 

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Hi Laura,

I haven't heard that commercial as of yet.

My doctor signed me up for the Rituxan trial initially. I ended up not doing it because there was no guarantee that I would get the real thing and not the placebo. I was very ill at the time and couldn't wait until the end of the study to get the real thing.

I am very grateful to those who are the pioneers for us.

Take care,
Lazylegs
 

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Here's an interesting site about drug trials in the USA.The general information is the same for the UK although things are done differently in some ways here


http://clinicaltrials.gov/ct2/info/understand

There's also research and studies that don't involve taking medicines or even giving blood, just answering questions, so the drug trials aren't the only way to further the cause.

Participating in fund raising, subscribing to the various organisations even doing your own bit to promote awareness , everything helps.
Once I was in an elevator and another person asked about my lupus pin.
He said he had a close friend who had just been diagnosed with lupus which he had never heard of before. He wanted to know where he could donate for research.

I have changed the title to attract more interest.

Cheers
Clare
 
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