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Just a random thought.
Some deaths are better than others.
Before trying a drug, make sure it's safe for you.
It's bad enough having ALS--you don't want to live out the remaining months in pain

This is why I support caution with a new drug.
 
It was a pretty easy choice for my wife. She watched her 2 sisters die an awful death and nursed her mother to death. Can't see how their deaths could have been any worse watching their breathing and feeding completely fail but the mind still 100%. We went through every other treatment available and discounted them for a long term prospect. I remember even coming on this forum 2.5 years ago asking for advice. So the chance to try RCH4 was a no brainer even though we knew of no-one who had previously had the drug. Pretty big leap of faith. At least now, there are RCH4 users available to talk to, so people can make a more informed decision.
 
With all due respect there are currently 77 reports from RCH4 users about its side effects on Patients Like Me.

76 reports of no side effects.

1 report of mild side effect ("post exertional fatigue").
 
Please note that is correct though the reports were made by 21 individuals. Not all profiles are updated. There is one who has not checked in in over a year.
 
Here's the thing people, we're all big boys and girls and we can and do make our own decisions. Any death is both bad and good, good in the sense that we are free of our suffering, bad in the sense that we leave our loved ones. Anything else is purely transitory.

Anyone that chooses to put anything in their body doesn't need nor deserve any finger wagging from anyone else. Likewise anyone who chooses not to go down a certain path doesn't deserve to have things thrown in their face.

We have people who choose to forego a peg or trache and others who choose to avail themselves to these options. It saddens me to see everyone going after each other for reasons that don't matter at all in the scheme of things.

There's an old country saying " never try to teach a pig to sing, all it does is waste your time and annoy the pig"
 
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Please keep in mind concerning the Patients Like Me RCH4 reports. Over half of them were suddenly removed a few months ago because of "reports from other members". Some users complained about all the patient RCH4 reviews disappearing and a few reports came. However most were never returned even though they were current from active users. Several PALS using RCH4 stopped posting to forums over this.

Also Radicava only has 58 patients giving reports on Patients Like Me but with only a 2% effectiveness of the drug.
 
Tim, that site had a whole bunch of posts and accounts disappear due to format changes according to the admin post there. RCH4 was not specifically targeted.
 
There were a few us that were told by PLM that they were removed because of "reports from other users". True story.
 
I have a suggestion. Why not start a forum for everyone taking RCH4 and those of us who are interested in following your progress? There are forums for very little money that can be ad free (at least there were when I ran some.) That way, you can control what is allowed, what is not allowed, and there is no risk of your reports disappearing.

I'm not suggesting you stop posting here or anywhere else. I'm just presenting an option that might evolve into something that could be useful now and in the future.
 
Kim, how do you know that one doesn't already exists?
 
I don't. I used ProBoards when I operated a financial planning forum. It was just a suggestion.
 
I just came across an independent site (hosted by PALS, not RC Charity.) The PALS have started posting their testimonials. I'd like to see more people submit their stories.

Also, of the reviews on PatientsLikeMe, I am the one user that stopped taking RCH4. I had no side effects for 5 months, but shortly after starting Radicava, I started to breakout with hives after my RCH4 injections. I stopped taking RCH4 due to my body seeming to become allergic.
 
Its now been 8 months that our mother has been on RCH4 .
In this time she and her ALSFRS scores remain stabe with no side effects.We as a family caring for our mum are so grateful to the charity for their ongoing information and support all provided free of charge.

Below is her latest ALSFR-S chart

ALSFRS_Decline_Rate.png


ALSFRS_R_score_month_8.png
 
That is a most excellent chart for your mom rjpmd5 I wish her well. You may want to look on the Patients like me website more RCh4 users post evaluations on there. Kind Regards and the best of luck.. TIANDB.
 
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