plaquenil

[DryGuy]

I just can't imagine living the rest of my life like this. It isn't fair, I'm pretty disgusted with life right now. I went from the happiest person to the most miserable in just a couple months. It's hard for me to find any joy when I'm in a constant state of discomfort and it's tough just to enjoy a good meal.  I've been betrayed by my body.

Did the plugs make your eyes like normal again or just help?

[quietdynamics]

I think I read that you are moving (within the month?) perhaps trying to find Drs. where you are relocating would be a better option.
Ask here for that location.
Usually, as most are aware it can take up to 3 months to get in as a new patient.
Up to 6 months with some of the others.

Has your ENT helped any? Immunologist?

Stress worsens symptoms exponentially. Cascade effect.
Behavioral therapy is a plus as a lifestyle adaptation.
Meds help, but, multidisciplinary approaches are what work.

AI does not discriminate by age, nor life aspirations, responsibilities. 
So sorry, no one is too young, nor too old.
We adapt to what is now the "new normal".

[LucyD]

Hi DryGuy,

So many others on here with more experience and good advice. (I'm still relatively new and learning.)

But, I, too, want to urge you to find a new rheumatologist. I just get so angry with the way some physicians disregard patients who are suffering!!!!

To offer a contrast to your experience thus far, I am seronegative and have not had a lip biopsy. My rheumy has diagnosed me with Sjogrens but also suspects I might be developing lupus because of my bloodwork. And she even suspects rheumatoid arthritis might creep into the picture. (I understand from others' posts that AI diseases often bring their friends.)

I did not have to have a lip biopsy. I had to see an ophthalmologist, mainly before being started on Plaquenil, but also for the dry eyes. She confirmed very dry eyes with the Schirmer (sp?) test (the test paper strips inside bottom eyelids) and also by visual exam.

She said on an AI scale from 0 to 3 she rated me at about 1.5. In my opinion, that is not a huge deterioration compared other poor souls who are really suffering, but all of this was enough for her to start me on Plaquenil, and now on Methotrexate because I have been getting worse.

Please get a rheumatologist who listens and cares and understands the need to treat without the stupid TEST results. Symptoms are still there!!! You are not making them up.

You will lead a productive life and will learn how to navigate this illness.

Hugs,
LucyD

[gemini052377]

Alderney, no I didn't have any itching, but I take the generic. Not sure if that makes a difference for you.

Gold 55 I have been on the plaquenil 3 yrs. The NSAIDs seem to do very little for me as well, it is hard for me to say how well the plaquenil helped because ever since dx I feel like I am on a roller coaster of really bad "flare" days and some this is a mild "flare" day and I can gets some things accomplished. However, I am afraid to know how bad I would be if I stopped taking it.

Stillinshockwithsjogrens-I refer to my eyes and mouth as Sahara desert dry as well, same phrase I don't have the plugs, yet. I tried lacrisert for some time but couldn't get it to last the 12 hrs it should. After 8 hrs max it would get gummy and sticky in my eyes. They just started me on Restasis twice daily in Nov. I plan to ask my Rheumy this month the possibility of using lacrisert with the restasis.

DryGuy, is Dr.Carson's still willing to prescribe plaquenil no matter if the lip biopsy is negative or positive? Even he said it has a 20% false negative....that to me is a high fail rate to base sole treatment on. If he wants it as a baseline, treat regardless and repeat in 2 yrs ok then. Mine was negative, even 8 mos after onset of symptoms. I did not have any complications from it, just felt like I had a huge fat lip. They had me use a peroxidase mouthwash for a week later. I had one area that persistently numb for about 3mos

[DryGuy]

Gemini:  he wouldn't commit, he said "we will reconvene after the biopsy". I pushed and he didn't bite.  He does want the slides to review himself at least.  He said he wasn't convinced it was autoimmune so I guess he wants to see what's going on in the MSG and go from there. At least that's my take on it. Because I know that just because the biopsy is negative doesn't mean there aren't lymphocytes invading the tissue just not necessarily enough to qualify for the focus score. It's annoying I wish he would've just given me an Rx and he could've asked me to start after I had the biopsy. I would have agreed to that.

[gemini052377]

Sorry, I was hopeful he was willing to compromise!

[cccourt1942]

DG, DG...I feel like a yenta (and I'm not Jewish!)
    It pains me each time I run across one of your posts.  BUT...this one gave me an idea.  That's why I don't feel quite so intrusive.  You know I am old...you know I "claim" to have had these symptoms for well over 25 years.  In addition, Elaine (Carolina) told me she thought my mysterious second Mumps episode at age 22 could very well have set my fate.  You may or may not know I have suffered miserably cold hands and feet since I can remember.  I have a life best friend, a cousin, and an older brother who can attest to this as accurate. It was  a family joke.  The sensitivities were always there...and not until I had children with sensitivities did I realize what those sensations actually were.  I think I thought everyone "felt" like that.  I am going to stop there as I will be over my character limit. 
    When I went to my rheumatologist I wrote a full page of symptoms, length of symptoms, "cocktail" party dxes (by medical drs) as well as an optometrist's statement nearly 30 years ago regarding my eyes appearing like "shards of glass".  He is the one that started me on the Naturale Tears.  Think about that--30 years ago.   I put in there a digestive attack when I was 35, I listed my female woes which led to hysterectomy at age 34, on and on and on.  Anything.  Then I worked up to sialadenitis for the last 6 years, the "allergic" conjunctivitis"  3 out of the last 4 years, discoloration of my teeth within a 5 to 6 year period  and again..on and on.  ANYTHING I could think of.  GERD, NSAID ulcer.  This is your assignment.  You state this came on overnight.  Really?  Are you sure?  I had an ear infection a year ago Super Bowl Sunday.  The first one in my life.  Went to an urgent care clinic.  The dr asked me if it didn't hurt a lot.  I said yes.  She asked why I waited so long.  I told her the ENT had said my purous OM had "resolved itself" about 6 weeks earlier.  (I had such thick mucous in my throat it kept making its way up my Eustachian tube.  I didn't realize it.  )
     Go back and think of any digestive problem, eye irritations, salivary gland swelling , etc.  I am not telling you to cheat, but go to the SjS symptoms...and go thru and think critically of each one.  Recall if you ever had a tinge of anything.  Write, date..and present to a dr.  This condition is NOT cheap.  You are already  in deep with various drs.  There is a new post of a new test via opthalmologists  only.  Two have had it.  I will try to find it and PM you again.  I don't know about lip biopsy.  It seems to be a quirky thing.   Also, my ENT told me the norm for dx was salivary gland biopsy.   You have two medications working for you...and you do say there is improvement.  I will say this (sorry to say this) eventually you will forget what it was like to be "normal".  Let me reword that:  I HAVE FORGOTTEN, etc.
     When I was a girl Alfred Hitchcock movies were hot.  In one of them Doris Day sang Que Sera, Sera.  (Whatever will be, will be).  Hum it.  After all, she said YES!  That does not mean "Yes if you are exactly like you are on this day till the end of time."  That means YES. Geez DG, there is a woman who queried on a post today about having another child at 35 with all this going on. If she can do THAT you can go forward without so much fear.  Please be happy where you are in your life.  You won't be sorry.

[Alderney]

@Alerney What's the latest with you? Did you have to stop the plaquenil? Or did the itching resolve? What your status on that?
[/quote]

Yes I did have to stop it.  I don't think we can get a brand of Plaquenil in New Zealand, i did ask at the Pharmacist but they only seem to have Generic, will try another one and see if its the same.