Has anyone heard news on treatment with alpha interferon lozenges? PubMed has several studies claiming the lozenges are effective against Sjogren's dryness.
I'm desperately for anything that will improve saliva flow as the dryness is wreaking havoc on my teeth.
Sjenny (Sue) posted a positive experience as a guest on this forum about a decade ago - is she still active here?
Quote from: Sjenny on November 10, 2008, 02:59:19 PM
Tim:
You could try it - it only works for an 90 minutes at a time but it might generate enough saliva and thin the existing saliva enough that your lips don't feel as sticky.
Also, I am on a trial of low dose alpha-interferon tablets and my dry mouth has been significantly alleviated.
Sue
The Rheumatologist I see suggested that interest in treating with Interferon Alpha fell off prematurely, and that it may be making a comeback as far as evaluating in future trials.
https://sjogrenssyndromenews.com/2018/03/01/sjogrens-syndrome-immunoqure-servier-partner-develop-interferon-inf-alpha-blocking-antibodies/
What I don't understand is that it is currently FDA approved for chronic viral infections and various types of cancers. Couldn't it be similarly prescribed off label for Sjogrens (in low-dose form), similar as to what is done for many of us on Rituximab?
Rituximab and IFN-A both made it to Phase-III trials specifically for Sjogrens, and both stand on a decade of clinical data suggesting efficacy... in a world where there is no other real "standard of care treatment."
Do you mean Veldona?
https://www.dailymail.co.uk/health/article-1239932/Veldona-The-20p-daily-lozenge-fight-cold-flu-bugs.html
If so, I had a negative experience with it.
Hi Sharon,
Not necessarily... the article above talks about IFN-a blocking antibodies. What would amount to another infusion protein therapeutic.
The old trials (up to Phase-III) however; those discussed 350IU of IFN-a x Daily, as a deficiency was noted in a large population of Sjogrens patients... hence the trials.
I am not sure what dosage(s) Veldona is administered in and how that compares to what was studied in the Sjogrens trials for oral IFN-a.
I have heard of adverse events in larger doses (when administered in the context of treating various cancers)... what sort of "stuff" did you happen to encounter?
What I tried were the lozenges which are more readibly available.
Perhaps the dosage was just off in my case, but it really revved up my immune system
in a way I have never experienced since. I developed severe neuropathy symptoms throughout my body within a day which felt like electric shocks, had strange gastro symptoms and every AI symptom I had became 10 times worse.
I abandoned the treatment after a few days.
From Dr. Fox's webpage... not sure when, or if, more studies are planned.
My Hopkins Rheum expressed interest... not sure where industry is with that though...
? Topical interferon alpha ? Oral interferon alpha was promising in
early studies [22,23]. However, results were less encouraging in a
subsequent 24 week trial in 497 patients randomized to receive either
interferon alpha lozenges (150 IU three times a day) or placebo. Primary
efficacy measures were not significantly improved over placebo
responses. Unstimulated salivary flow rates were significantly improved in
those who received oral interferon (0.76 versus 0.58 gram/5 minutes). A
role for the maltose content of the placebo lozenges used contributing to
the unexpectedly high placebo response has been proposed but is
unproven. Further studies will be needed before this medication is
available.