Still have HOPE.

[Razoo]

I have been googling, I love to Google. You just don't know what's hidden in the pages of this phenomenon. I can't remember what I typed in but it was to do with Lupas, and up came Stem Cell Therapy. I was excited. I have emailed a place in Australia that do clinical trials for Lipas, America have it to and one young 15 year old had the SC Treatment and she is back to normal. No more steroids and NO side affects. Has anyone here thought about or even know about SCT? Interested in your thoughts.😃

[Paul_Howard Partner LUPUS UK]

It is still early days with stem cell research in lupus, but you can read more about it here - lupus.org/research/stem-cel...

[yakamalayo]

Just read the article in Paul's link below. Very exciting possibilities!

[yakamalayo in reply to yakamalayo]

Sorry, it's the link above - the reply box is above the previous replies until you press submit - DUH!

[kazp]

I tend not to Google or Yahoo or any other engine as the information you get is contradictory, confusing and sometimes just plain wrong!

America is far more advanced on Lupus meds and procedures they always have been, the likelihood of getting this in the UK well in all honestly Nil.

Smile

[Cvansidener]

There are a lot of places here in the US that are using stem cell treatment for Lupus and other Autoimmune Diseases. It is not cheap and considered alternative so you have to pay for it out of pocket, but many people have had positive results. From the research I have done here and the doctors I have talked to it seems to help the most with joint pain.

[Paul_Howard Partner LUPUS UK in reply to Cvansidener]

Hi Cvansidener ,

At present stem cell therapy is only in clinical trials and not used widely in the use of lupus. It has shown some potentially positive results in the trials, but its safety and efficacy have still not been sufficiently proven and it is not licensed. You can read more about the research of stem cell treatment in lupus at lupus.org/research/stem-cel...

There are a lot of 'treatment' centres that offer a 'stem cell therapy' which claims to cure a wide range of different conditions. These 'therapies' cost huge sums of money are completely unproven ,unlikely to work and could be incredibly dangerous.

The International Society for Stem Cell Research (ISSCR), a group of established stem cell researchers concerned with the proliferation of unproven treatments, has issued a patient handbook on stem cell therapies.

The ISSCR advises patients to seek only stem cell treatments being tested in clinical trials approved by a national regulatory agency such as the European Medicines Agency or the FDA. It also allows for smaller studies approved by an independent Institutional Review Board (IRB) or Ethics Review Board (ERB).

The ISSCR lists these warning signs that a stem cell treatment is not legitimate:

1. It makes claims based on patient testimonials.

2. The same stem cells are used to treat multiple diseases.

3. The source of the stem cells is not clearly documented.

4. How the treatment will be done is not clearly documented in a "protocol" that serves as the medical practitioner's operating manual for the procedure.

5. Claims there is no risk. All medical procedures carry some risk.

6. High cost or hidden costs. Legitimate clinical trials don't charge patients. Some even pay them to participate.

[Cvansidener in reply to Paul_Howard]

Thank you, Im at the initial stages of research but have found a clinical trial thats going to be done on the mainland here in the US, so I have contacted the doctor in charge of that to see if there is a chance. I appreciate your input and will continue my research.

Mahalo!