Still here thanks to RCH4

[Romeosc]

If they are no longer accepting new PALS.... what use are they to us?
the research should be published.....

 

[GregK]

Romeosc, to be fair, the availability depends on funding.

 

[Romeosc]

Just got email stating.... "Having studied your form, I am now able to confirm that we will provide you with the new ALS drug RCH4 subject to everything being satisfactory in your clinical file and on the understanding that:"

I will talk to Dr. @ALS clinic

 

[WeirdTim]

No progression shown since starting RCH4 a little over a month ago. Never thought I would be able to mow the lawn using my rider but I have done it twice now. Can not use the weed trimmer but I am not complaining.

 

[KimT]

Thanks for the report, Tim. That's great news.

 

[Romeosc]

How much does it cost you?

 

[GregK]

22 days back you got approved and you're now asking cost?!?

It's free, lad.

 

[Romeosc]

22 days back you got approved and you're now asking cost?!?

It's free, lad.

I was approved but I have not got ALS clinic to recommend or prescribe. Do I need to stop Radicava or Riluzole?

 

[ShiftKicker]

Romeo- My understanding is the RCH4 folks can provide all the answers you need with regards to what you need to do in order to qualify. They are quite protective of their procedures and what information they make publicly available, so I'd communicate with them directly about your options.

Best of luck with them- I hope you can get information that helps you out.

 

[WeirdTim]

Agree, your contact with the charity will answer all your questions very well. They are the best.

 

[madmarlon]

Good to see there may be some new Rch4 users. Please feedback on how you are going. If you have questions on usage the supplier will help you or send me a PM and Ill help if I can.

My wife is still doing very well and no progression and we are both very happy.

Her latest chart is below and efficiency.

 

[GregK]

WT, have you any input or reaction from the doctors?

 

[nickrr]

I haven’t posted for a few months and I wanted to share my progress on RCH4, I have been taking it now since August 2017 and since then My ALSFSR score has only declined by 2 points, my data below.
I am extremely grateful for all the help and support the charity has provided me so far and I’m happy to see more and more PALS supporting the charity as they deserve it.

Nick

 

[affected]

removed my text as I asked a question then realised the answer.

 

[WeirdTim]

My CO2 levels are lower than the last time in March. Pulmonologist is happy with RCH4!