Frustrated

[highlandmck]

I'm very frustrated each time I see hope and a new clinical trials I cannot participate as I am an eight on EDSS scale. I have or was diagnosed 2011, with a slight limp to my walk, 2013 I was in power chair, 2019 in a nursing home almost quadriplegic, still have a feeling in limbs just no muscle strength
What was really frustrates me is because I am eight [at the least] on the EDSS scale it appears there are no treatments for us, if there is please let me know.

[Seasha]

I'm sorry you're frustrated, highlandmck. I would be too. Are you PPMS? I went and looked for trials for PPMS patients and forgive me if I assumed you fit that category, but I found this at clinicaltrials.gov and did a search. If this doesn't fit your particular parameters, you can re - search within this site.

There are a few you might be interested in. Some are recruiting. https://clinicaltrials.gov/ct2/resul...r=&type=&rslt=

Some are out of the US. Keep scrolling down.

Hope something jumps out at you that you can enroll in and benefit from!

[highlandmck]

Thank you for information
Unfortunately I believe I'm now more than an eight on EDSS and I saw none that I Match criteria for
However I signed up for a RSS feed so I can be notifies of upcoming new trials, here's hoping.
As for me I don't know if I'm PPM S or SPMS, my Neurologist when I asked said I could answer that question better, he is an ms specialist.
In my Professional opinion I have an aggressive form of the disease, I say professional as I'm the one living with it every day.

[Seasha]

However I signed up for a RSS feed so I can be notifies of upcoming new trials, here's hoping.

Good idea and yes - here's to hoping! Take care

[Myoak]

Hello!

There is a trial being organized in the UK that you should become aware of. The trial is being called the "ChariotMS" and will use cladribine to halt deterioration in people with advanced MS.

I believe cladribine will prove effect in this trial of those with a high EDSS. Obviously, the doctors organizing the trial have sufficient reason to believe so, also. Please recognize pulling off a trial in those with a high EDSS has NEVER been done and requires a herculean effort. All the pieces are not in place but they are very, very close to recruitment.

As far as I know, there is no trial arm in the states. However, since you are a UK native, perhaps, there is some way you might be able to arrange for participation. I have no idea but anything is possible.

It is remarkable to me that cladribine has been approved in over 30 countries for MS but not the US, as of yet, anyway. I believe it will be approved, possibly this year or next. Obviously, if it is approved for RRMS then insurance may not pay unless your doctor makes sure RRMS is your diagnosis.

As you can see, loss of insurance coverage with a diagnosis of SPMS or PPMS is one reason many good doctors will never tag their patients with either of those. There are always exceptions, but believe me, it can be harmful to your health to get tagged with a diagnosis for which insurance can legally exclude coverage. So please be aware of that.

Best Wishes!

[Myoak]

High EDSS trial info...

https://multiple-sclerosis-research....-to-chariotms/

[highlandmck]

Hello!

There is a trial being organized in the UK that you should become aware of. The trial is being called the "ChariotMS" and will use cladribine to halt deterioration in people with advanced MS.

I believe cladribine will prove effect in this trial of those with a high EDSS. Obviously, the doctors organizing the trial have sufficient reason to believe so, also. Please recognize pulling off a trial in those with a high EDSS has NEVER been done and requires a herculean effort. All the pieces are not in place but they are very, very close to recruitment.

As far as I know, there is no trial arm in the states. However, since you are a UK native, perhaps, there is some way you might be able to arrange for participation. I have no idea but anything is possible.

It is remarkable to me that cladribine has been approved in over 30 countries for MS but not the US, as of yet, anyway. I believe it will be approved, possibly this year or next. Obviously, if it is approved for RRMS then insurance may not pay unless your doctor makes sure RRMS is your diagnosis.

As you can see, loss of insurance coverage with a diagnosis of SPMS or PPMS is one reason many good doctors will never tag their patients with either of those. There are always exceptions, but believe me, it can be harmful to your health to get tagged with a diagnosis for which insurance can legally exclude coverage. So please be aware of that.

Best Wishes!

Thank you for that information , I am currently on ocrevus I was labeled as PPMS /SPMS

[highlandmck]

High EDSS trial info...

https://multiple-sclerosis-research....-to-chariotms/

Unfortunately I cannot meet that criteria they have

[Myoak]

I'm sorry that you may not be able to participate in that trial. But we all hope it will be successful and that cladribine will prove effective for those like you with a high EDSS.

Of course, Ocrevus is the first DMT approved for PPMS but there will be others, and IMO, cladribine is likely to become one of them.

I really appreciate the UK researchers who are putting so much effort into this trial for those who seldom get attention or trials directed toward high EDSS needs. Really proves to me that these are rare and exceptional doctors and I admire them greatly. These doctors provide hope and with focused research, will much provide needed DMTs for those with high a EDSS.

I think it is great that you are on Ocrevus! I wish you the best on it!

You have my thoughts and prayers, my friend!