worsening symptoms and possible new cures

[bluegardenia]

i hope im able to explain my question;
what is faster, the worsening or the finding of possible new meds?
in the last years something new was found or everybody goes along always with the same medicines while the symptoms were worsening?

[WhatYouSjo]

The advancement of symptoms very much depends on the patient involved. Some people experience only minor dryness for decades; others go from healthy to nearly bedridden in a matter of weeks. For most, it is somewhere in between, though membership of this forum generally skews towards those with more advanced symptoms.

While there was a new drug approved last year for eye dryness, there has never been an FDA-approved treatment for Sjogren's Syndrome as a systemic disease. Luckily, there seems to have been increased interest recently, and there are quite a few drugs in the clinical trial pipeline. Unfortunately, most are in phase 2 trials, which means 5+ years before they are generally available if the trials go well. The biologic Orencia is currently in phase 3 trials, and is on track to be the first FDA-approved systemic treatment for SS, assuming the phase 3 trial is successful. The timeline for approval is likely to be sometime in 2020.

So while there are many new treatments in the pipeline, there is unlikely to be any new drugs approved for several years. Many patients take Orencia or other biologics like Rituxan which are approved for other autoimmune diseases; however, this is very dependent on one's insurance and doctor. Other patients are trying alternative therapies like helminths, low-dose Naltrexone, and CBD oil while we wait for clinical trials to progress.

[Carolina]

I have had many new conditions develop over the past 17 years.  The pace of the development of new conditions escalated over time.  I cannot imagine what will come next, but I don't really worry.

In many cases I have found some relief from medicines and treatments (Like IVIG every four weeks).   However, I would say that the progress of my Immune Disorders has been worse than my ability to find help.

What I do have, however, is a mixture of medications that keeps me almost pain free.  And I have braces now which help me walk, tho' not very well.

I have had to give up driving, which was very hard at first, but I'm ok with it now.

I have never found a cure for anything I have, bluegardenia.

It is unlikely that there will be any cures for Immune disorders in my life time (I'm almost 75 you see).

The key is patience, persistence and acceptance.  Acceptance is the hardest part....but fighting is time consuming and tiring.....I persist in finding help for myself, but I accept that I have many conditions without complete treatments.

Best wishes.

Elaine