my visit with the new rheumy not great. please read. :( i need advise

[valene2009]

thanks everyone just got home.. basically he told me to stay on plaquenil... i told him my doc first prescribed it wheni got diagnosed 15 years ago and had no symptoms.. i only took it for about a month but since i didnt have symptoms other then a minor dry mouth (nothing compared to now) i stopped.. he acted like if i would have continued to take it all these years that my eyes and mouth may not be dry like they are now??? i got pretty upset-he said with sjogrens the lacrimal and saliva glands get scarred and there is no going back... i said what about restasis and other drugs that may come out?  he said there would prob never be a cure in my lifetime (im 37)..  i was pretty letdown..

i know there isnt a lot they can do for us.. but do u guys agree-if i would have stayed on plaquenil all these years my eyes wouldnt be this bad??? can it really prevent a full on sjogrens attack?  he didnt say that excactly but IMPLIED it... i think it may have slowed some of this down but eventually my eyes would have gotten this bad...

im curious for other opinions.. i know i cant turn back time but it makes me feel awful.

[Linda196]

Because I've has Sarcoidosis for over 30 years and chose way back then to treat symptoms and avoid immunosuppressives and DMARDS until I had either brain or eye involvement, I specifically asked my rheumy if starting those treatments earlier would have made my onset of SjS any less symptomatic or severe. He told me that it may have delayed my complaints about the symptoms for a while, because I would have thought they were already being dealt with, but they would have happened anyway.
As for comments about irreversibility...not necessarily true..once I started treatment (Prednisone, Methotrexate and Plaquenil) saliva glands that didn't even show up on scans slowly started functioning again, and although my Schirmer's is still 0/0 for the most part, I have occasionally crept up to 1 in one eye....so things can start working again.

[lolo1979]

Awww, don't be sad valene!  You need to find a new rheumy who doesn't make you feel so bad about your illness.

First off, in total agreement with Linda....to say that things can't work again is not necessarily true.  Number one, there is a very supported theory out there that says the dryness is caused by autoantibodies against our m3 receptors, which are responsible for saliva and tear production.  Apparently, the antibodies bind to the receptor sites and interrupt the nerve signals.  Eventually, after the glands haven't functioned in so long, they begin to become inflamed and atrophied.  This doesn't necessarily mean they are DESTROYED forever.

Not to say some don't become permenantly altered, but I've read that typically no more than 50% of a person's salivary glands are destroyed by the disease, leaving 50% still able to function.  So that's why they don't completely understand the extensive dryness, and believe it has to do with the nerve signals being interrupted.  "They" say that 50% of your glands still in tact should be enough to provide the saliva you need. So they think there are other factors at play.

I believe you could be in a flare right now, but I would bet ya a million bucks that your dryness will improve again at some point. That's the way this disease seems to work.

And last but not least - saying there's not going to be a cure in your lifetime??!  FORGET HIM!  That is not helpful. Tell you what - go to google under the "News" section and google "autoimmune".  You can read all about the different treatments being worked on and investigated right now.  In fact, when I get some time later, I'll post a few links.

Chin up!

[Aquarius]

I have been reading lately about platelet rich plasma (PRP) therapy.  As I understand it platelets are rich in nerve growth factors and are injected in some areas of the body to rejuvenate tissues.   Orthopedic practices are beginning to delve more into PRP with positive results.  Tiger Woods had PRP.

I choose to believe that new discoveries are in our future with stem cells and PRP.  It might be awhile, okay maybe even a long while, but let?s hold on to hope and optimism that scientists find a safe, clinically tested and approved approach to reverse damage and rejuvenate glands in our lifetime.   

[valene2009]

thanks everyone.. ii really appreciate it. i wont give up. iin fact im seeing a naturopath on monday at 10.

[Cheryl]

Valene,
  I have been taking Plaquenil  for 11 years.  I don't know how much it helped or delayed dryness, but my dry eyes and mouth continued to worsen while taking it.  I believe it's a worthwhile medicine, but it does not prevent progression of the disease.  (I know that it helps me with joint pain and fatigue.)

You can't go back in time, so don't lose sleep over what your doctor said to you.   Find a rheumatologist you trust, and decide together the best course of treatment for you starting now.

Best wishes,
Cheryl

[Madison Granny]

I don't think we can really know what would have happened if we had done things differently.  In 2002 I got sick and didn't go to the doctor for about 2 weeks.  When I finally did, they told me I had shingles.  Now 10 years later I still have neuralgia.  My husband likes to bring up that if I had gone to the doctor they day I became sick I wouldn't have it still.  We can't change what we did back then so I've had to move on and deal with it.  it isn't fun sometimes but it is bearable most times.

[valene2009]

wow..thanks for the replies.. i really appreciate it.. all of you have made me feel so much better.. i know most of the people on here aren't real happy with their Rheumy... I also know a lot of people in general have a hard time finding a doc they click with... As my mom said-a lot of docs are negative...
You are right to say not to lose any sleep over what he said.. No one knows what would have or could have happened... i needed to hear that. thanks.