Question: Were you started on...

[littlelou]

...drugs before you were officially diagnosed or after?

[littlelou]

Sorry; one more thing.

Were any of you given naproxen? Did it help?

[Dolly Dimples]

 Hi Little Lou, I have only recently been given Naproxen, which is for the pain I get in my upper back.. I find it helps, not wonderful, but useful.. tho'I don't think it would be useful for anything other than pain .
   I  have never been offered Plaquenil nor any of these  other drugs that a lot of people on this site use. probably because I'm in England and the Docs here are so wary of prescribing anything like that,  you will probably get some replies from those on here who are getting drugs that treat the immune system.. I hope you soon get something that will help with your problems . Keep us informed how you come on.. Dolly. 

[Scottietottie]

Hi 

I was put on NSAIDs way before I was diagnosed. The first one was Voltarol and later Diclofenac. After I was diagnosed I was out straight on to Plaquenil and naproxen, which I really liked. I wasn't allowed it for long though because I developed gastric issues and also unexplained bruising so the Naproxen had to go. Now I'm on Tramadol and paracetamol for pain relief.

Plaquenil is also called Hydroxychloroquine. I'm also in England and the rheumy put me on it first visit.

Naproxen was for the pain caused by inflammation - not to treat the SjS exactly.

take care - Scottie 

[SueAnn]

Littlelou,

Yes, I was given a script for Plaquenil before the lip biopsy, which came back inconclusive.  This was on my second visit to the Rheumy and my blood tests and symptoms pointed to .

SueAnn

[Patze]

Hi Littlelou,

That's a bit tough for me, let's see if I can remember it straight!  I had been diagnosed with Hashimoto's already, but I was having a lot of problems with pain, so I was sent to a rheumy.  This particular rheumy decided that something was going on and talked me into taking Plaquenil as she tried to figure out what exactly was going on.  She left the practice and I wound up with the other doctor, and he has also kept me on it, plus added Lyrica, Flexeril, and a few other drugs to boot.

Officially, I still don't have SJS, I have SICCA, Hashimoto's, FVL, and some other things as well (including a partridge in a pear tree! ); I do know that I am gratefull for the rheumy keeping me on it with just a high SED, and no positive blood work.  

Other than Naproxen, has your doctor prescribed anything for you yet?

Take care -

Patze

[JannaLee]

I don't know if my Rheumatologist would have treated me if I were sero negative.  I suspect he would.

My head and neck surgeon did my blood work which came back positive for Sjogren's and sent me straight over to the Rheumy who immediately put me on Plaquenil.  I've found the Naproxen (over the counter) helped only a tiny bit but the Plaquenil has helped a whole heap!

From what I hear there are a lot of docs who prescribe without diagnosis, and some who diagnose on symptoms (in the absence of positive test results).

If you are not getting anything but Naproxen from your doc. you might try another opinion to make sure your current guy is providing you the very best care.

You deserve medical efforts aimed at helping you lead a productive life.  If you can't do that, what else is there?

Janna

[Collie]

I have have been treated for chronic dry eye for 1 1/2  years and had plugs put in a year ago. This summer I was told I have GERD, Asthma, chronic dry mouth, and problems with my vocal chords, I was out on meds to treat these symptoms, but not SS. A few months ago, I need to do a med review because my meds were contradicting each other, and it was then I asked the doc why i was being treated for the symptoms of sero neg SS with out the diagnosis, it was then I was started on methotextrate. Neither the doc or I expected much of an improvement, but in just one week the swelling had gone down quite a bit. Two months later, and I can still see improvements.

Collie

[ohiolady]

I was started on Restasis and Evoxac for my extreme dry eyes and mouth.  All my bloodwork looks good even though I was very sick and had a myriad of symptoms.  I have Hashimotes Thyroiditis though my thyroid has not failed.  Due to having elevated antibodies for the thyroid, the Sjogrens was diagnosed as secondary.  I guess the antibodies don't always show in secondary.  Before the Hashimotes diagnosis, the rheumatologist wanted me to have a lip biopsy.  After the Hashimotoes diagnosis, she did not push for the lip biopsy.  I see a rheumatologist at Cleveland Clinic.  On the first visit, she offered Plaquenil and I declined.  The last time I saw her, she said that since I was feeling better, she would not prescribe Plaquenil because all medicines have side effects.  I'm sure a lot of her patients do take Plaquenil.  Joint pain is not one of my major complaints.  I, also, take Prilosec for GERD that was diagnosed after Sjogren's.  Never had a problem before.  The doctor also prescribed 3000 mg of fish oil and 1000mg of Vitamin D. 

I take naproxen occasionally but not too often due to my stomach. 

It seems each doctor is a little different with the meds they prescribe.  It will probably depend on your individual chief complaints.

Anna

Anna

[jazzcat82]

I need mine...thats for sure..I really think the Plaquenil works good. and I am on Lyrica which I can tell works very well. I dont think I could function with out the Hydrocodone..so if you ask me..go for the meds. Oh and I think the Restasis works well too.

[lynnmarie219]

I wasn't on any "Sjogrens meds" before diagnosis, but I was on medications for a couple of symptoms like GERD. When everything went haywire and I went to my GP, he suspected autoimmune right away due to symptoms and did labs. I was positive and the rest is history!

Now I'm on many medications and I wouldn't take them if I truly didn't feel they were helping me. I hate the thought of taking so many...but quality of life is important to me! 

[Calli66]

No, I wasn't on meds before diagnosis and I felt like crap. I was so used to the dry eyes that I could deal with that, but the hypothyroid symptoms were weighing me down, down down. I couldn't concentrate on anything, was depressed, was incredibly grumpy.

It's been a year now since I started with the thyroid meds and Plaquenil and I feel a lot better.

C

[Nathan]

Well considering I haven't been officially diagnosed yet, that's a big yes for me. I'm on plaq and so on.