Summaries of counts/treatments

Just wondering would it be possible to post ITP summaries of those who visit this website.
The summary could include headings such as date of diagnosis, treatments and counts, remissions, whether there are other conditions present and any other brief information which may be relevant.

I think it would be useful to cross reference ITP summaries when looking at options for treatment rather than trawling through posts looking for information.

The information on this website on treatments is good but it would be great to see a list of what worked/did not work for individuals and also it could show those who went into remission and left the website.

Any thoughts?

Mary, that does sound like a good idea to me. I'm not getting the idea of how that would work though. For someone from this site to do that would be a HUGE undertaking and I'm thinking it may infringe on privacy issues.
Now, if people currently on the site would agree then a thread could be started where one could share such info. I dunno. It sounds good, but not sure it would work.

AS someone new to itp "I think it would be Invaluable"

I thought it sounded a good idea and then thought about how I would go about detailiing my own experience and realised how long and complicated it all is. I wouldn't know where to begin.

Not sure about the privacy issue but this site is easily accessed by any interested parties anyway. The information need not be anymore than people are putting out there anyway.It could be done on a thread as suggested unless anyone can come up with another way
I do appreciate Ann that some here have a long history and it might be difficult to include counts/treatments over years, maybe ranges over periods might work for long term ITPers with peaks and troughs.A graph for each individual showing years/counts/ treatments could also work?

There used to be stories on the main website, where people interested in sharing a detailed story could submit. Maybe it's time for PDSA to put out a call for new stories.

In addition, there is a book of stories that can be ordered from the PDSA store. For a while it was sent out at no charge, just for the asking, but I'm not sure if that's still the case.

People can submit stories here:

www.pdsa.org/submit-a-story.html

Stories can be found here:

www.pdsa.org/join-the-community/personal-stories.html

I couldn't find the book of stories...not sure if that is still available.

I'm not sure how a thread regarding treatments would work or how it would be any different than looking through the treatments section. You'd still have to read through a multitude of stories to get info, and it would be very varied as all patient experiences are different. If you have a specific idea that I'm just not getting, please let me know.

Sandi I was thinking of brief factual information such as Amy posted about Josh in the thread " 6 years and finally a normal count" The dates and counts give a clear picture over time. If everyone here posted this type of information it might help new people to see where things might be heading.

For example I spent hours on here looking to see how different people responded to Rituximab to see if I could predict how things might go for Niamh but I trawled through so many posts to find what I was looking for. I thought it would be good to access all this type of information in one place.If I could have analysed information on say 50 people who tried Rituximab and their counts through and after the treatment it would have been great.

Maybe I'm still looking for patterns where there are none

Not sure if I'm making sense...long day.

Mary, the best way to get a bunch of responses/stories about a single topic in one place is to post a question about the thing you want to know about. If you want to know how people responded to rituximab--ask. The more background you give in your question, the more responses you'll get from people in similar situations.

I prefer the opposite, if I want to know about a treatment, I read the research. The opinions and experiences on the site or any discussion site can give a very skewed picture of the true story. Discussion boards are better for support than for facts, unless the discussions include links to reputable references. JMHO.

I agree with Tamar. For example if you look at Rituxan, it seems when you ask here that it works well but if you look at the reports and the true statistics it actually works for something like 40% of recipients. So here you get a very skewed response.

You are also getting responses here from people for whom little has worked. The people who have gone into remission have left the forum so the results once again are skewed. The forums here are good for support at difficult times but not really for judging how well any specific medication works.

And....I don't believe there are any patterns. I've read every story on here since the inception of Rituxan for ITP in the early 2000's. I've never seen any way to predict who will or will not have a response. Patients can either have a sudden fast rise in counts, a slow rise over a two to three month period, or no response at all. Length of remission varies too and cannot be predicted.

Tamar is right though, if you want to know, start a thread.

Thanks. Tamar my intention isn't to use the summaries alone to make decisions. I have researched each treatment/trials/statistics as you suggest before we made any decisions, any information gleaned here would be supplementary to that.
I also realise that this site can give a skewed view as those with chronic ITP tend to stay longer and those in remission leave. Also correlation and causation are impossible to evaluate as remission can happen with or without medication.

I'll let it go folks

Here's my summary...

Peak of 200 when Niamh had a virus,



The wait and watch approach continued until March 2011 when signs and symptoms reappeared.