still no "real" diagnosis!

[gold55]

Ohhhh it's been a year and at first I had elevated ANA and SSA antibodies, now my ANA is 1:40.  All of the extensive blood work I've had for ALL autoimmune disease and everything else has come back normal.  My eyes and mouth are not totally dry....my arthritis has calmed a bit.....so right now I'm dx as "arthralgias and elevated ANA!!!!  In six months she's giving me a test to see if it's "safe" to give me plaquenil???  Has anyone heard of this test??  She thinks I "may" have erosive osteoarthritis which I believe is part of SJS, right??  So I would think Plaquenil would be the right thing to start.  My CBC, Sed rates, CRP and every other blood test has come back normal except my high cholesterol!!
I have not been fatigued in the past year....so, can anyone comment on this??

[lolo1979]

Hi Gold,
My ANA is the ONLY thing that has ever been elevated for me, and the highest it's ever been is 1:160. Usually, however, it runs at 1:80.  Yet, my mouth and eyes are dry, and I have all the weird intermittent neurological and rheumatological features of sjogrens, and I have a firm diagnosis of sjogrens. 

I think it's ridiculous you're not getting the diagnosis after having those two tests return positive - regardless of the fact that they went negative again.  I think that happens with AI diseases as they flare and calm down again. 

Just because your symptoms are not causing you dire effects right now doesn't mean you don't have it.  It sounds as though you do have it, but just have a mild case or perhaps are in early stages.  Best to get on a treatment plan now, while you can still prevent damage.

Once damage is done, it's done.  I would push harder on this for sure! You deserve to be diagnosed and treated - or at least treated.  If your doc pushes back, then find a new doc!

[gold55]

thanks Lolo....at least she's pondering Plaquenil.  My other rheumie would have had me on Methotrexate by now...she's just the opposite!!  I want to avoid a lot of pills but I really don't want to get deformed arthritis.  I read that 20% of SJS patients have somewhat normal tears and saliva so, why couldn't I be one of those people and instead it's attacked my joints!!  If this were normal osteo I would understand but if there's any chance that it's erosive due to SJS I think the Plaquenil might slow it down. 

[AAACGRL]

Wow. My findings were all normal except low vitamin D and B and a high CRP and SED rate and my Rheumy started me on Plaquenil on my second visit to him. It has helped a lot, for me at least. Everyone is different though.  I hope she will consider it for you soon. It's not a cure all but it has helped me with my joint pain and fatigue. I have to take Salagen and Restasis. Sorry you are going through this.  I've never heard of a "test" for safety in taking Plaquenil EXCEPT they usually make you see an eye dr to get a baseline of your visual field and so on as the drug can cause eye issues but it's said to be very rare. 

[gold55]

Also, in AZ there are not a ton of Rheumies!  If you dump one you are lucky to get your last try
I forgot to say I do have the peripheral neuropathy.

[eyeamdry]

One of my first diagnosing rheumys left U of Michigan and moved to AZ a few years ago.  I think she is at AZ Arthritis Clinic.  Lucy

[matildamillicent]

That seems crazy, if you've got a positive SSA, then you should be given a diagnosis!

I've got an ANA of 1:80, my eyes and mouth are very dry, my joints swell, I get rashes, have abnormal LFTs, Raynaud's, sun sensitivity, fatigue etc etc. I have a diagnosis of UCTD but my doctor said it's in the "Sjogren's family". I've been on Plaquenil for almost 9 months and I've been doing really well. I'm 22 and have had symptoms since I was 8, but only really got any answers in the past few years, previously to that my joints were just treated with steroid injections and I didn't even realize my eyes and mouth were dry because that's the way they've always been.

I've never heard of a test to see if it's safe to give you Plaquenil. Maybe they're checking your eyes? It can cause changes in your Platelets which I have had before. Other than that, I don't know what it could be. I don't think osteoarthritis is related to Sjogren's Syndrome, it's usually an inflammatory arthritis.

It seems like Plaquenil would be a good place to start. I would not be without it now, it's given me my life back. Yesterday I managed to go for a 1 hour swim and 1.5 hour walk. This time last year, I couldn't even get out of bed. I pushed and pleeded for my rheumatologist to prescribe me something to help rather than worrying about giving me a diagnosis. Nine months ago I started Plaquenil, last week I was diagnosed with UCTD.

Good luck.

[mshistory]

I have non-erosive polyarthritis - my rheumy said the arthritis associated with SJS doesn't usually cause joint damage. I also think if you tested positive for SS-A you should at least be given Plaquenil to see if it helps with your symptoms!

[gold55]

You are all so kind Lolo, eyeamdry, mshistory, matilda and AAA to read my post and respond.   I know I'm not in desperation or in tons of pain like others at this point so it's nice that you take time to give me your opinion on this "test for plaquenil safety" 

@ matilda and mshistory I do agree that if I am producing SSA's I should be diagnosed and put on Plaquenil being that I have more tendon, muscle pain and some joint pain in fingers and big toes!
Guess we'll see after I take the plaquenil safety test....LOL....sorry but this kills me never even hearing of such a test. 

@eyeamdry I am going to try to find your old Rheumie I believe up in Phoenix!

For now my rheumie prescribed me Mobic and some Voltaren gel (when I only need to treat my toes) so I am anxious to try this.  The OTC stuff just isn't touching my tendon, muscle and joint pain like it used to! 
I have a second rheumie I may go back to in August.  She wanted to put me on Plaquenil my first visit! 

thanks much, Jill

[Sven]

Best to get on a treatment plan now, while you can still prevent damage.

Once damage is done, it's done. 

How does our different medicines work? Are for example Plaquenil fighting the disease in the sense that is slows down (I dont dare to write stop ...) the damage or make it us "just" feel better (if you understand what i mean)?

I of course really dont like the feeling that I am getting worse all the time so I would be very motivated to try some of  biological treatment (as B-cell Depletion with Rituximab).

Anybody know a a pilotstudy I can join?   

[gold55]

I've only "heard" that Plaquenil slows the progression of our disease and it is written that Sjogrens progresses slowly.  Now whether that means in the beginning or in the stages of salivary, lacrimal, connective tissue and joints, I don't know.  Don't know if it begins to affect our organs if it still moves slow or the progression speeds up?  Guess it matters if you have a mild or very bad case of it.  There was a thread where we attempted to discuss stages of disease but I'm not sure we were successful regarding Sjogrens.  There is so much of the unknown and it's so individual!
@Sven, I would think the infusions are for people who have much progression with this disease than someone like me who has dryness and aches and pains in muscles and joints.  I think I am a candidate for Plaquenil and I'm sorry but I can't remember your case as being very severe?  Wish you luck with a good doc who wants to make you feel human again!   

[Sven]

I think I am a candidate for Plaquenil and I'm sorry but I can't remember your case as being very severe?   

My case is not very severe. Yet ... But the way things are going it will be quiet soon I am afraid. I got Salagen and it felt really good to have a good saliva again. Two months later I am almost back as before the Salagen. This disease is supposed to develope slowly!

And that is the reason why I want to take on the heavy stuff at once. It is just going the wrong way too fast.

[Patze]

Hi Sven,

There is no guarantee how SJS will affect the person.  Where SJS progresses slowly with some folks, a little faster with others, and still faster with others...there is no way to predict how it will each person (as we are all so different).  Can you speak with your doctor about your concerns and see if he can either up your dosage of Salagen or change the med to Evoxac maybe?

Hang in there, and keep us updated, okay?

Patze

[Doxie]

Hi Gold!

Wow, a year and no diagnosis? That has to be frustrating! I think being in limbo is very, very hard. Sometimes I think I'd rather have a diagnosis I don't want than be in limbo.

You are right. Though dry eyes and dry mouth are the "hallmark" symptoms in Sjs, not everyone has them, and they do say that erosive osteoarthritis can be a part of Sjogrens.

From everything that I've read and studied about Sjogrens, it seems like I hear about a lot of cases where people were diagnosed who showed up with neuropathy as their only or main symptom at first. I think that PN and other neuropathy is much more common in Sjogrens than most people realize.

I've never heard of a Plaquenil test. Like someone else, my Rheumy did tell me to go get an eye baseline when I first started taking.  He's also told me to also get my eyes checked every 6 months, but my Opthamologist said that every year is good enough.

Jill, I suggest that do your best to get on Plaquenil.  You really don't want things to get worse. Even though you seem to be doing better, it can go downhill fast. I do think that Plaquenil slows our immune system down. I don't know how or how much, but I really think it does. The nice thing, is that if you have other autoimmune diseases that you haven't been diagnosed with yet, it can help with those too.

I know that Plaquenil has slowed down my progression and I'm so glad I'm on it. (even though things keep coming out of the woodwork recently)

Good luck with things, and let us know! 

[Net]

Good luck and I think you should push for the Plaquinel too!  My ana is just speckled and symptoms pointed to sjogrens about 4 years ago so my Rheumy at the time started me as a 'trial' on Plaquinel and I actually felt a bit better immediately which is unusual but definitely by 6-9 months my fatique/arthritis/gastro probs/ were much bettter and flareups less frequent and in duration.
Never heard of the test also just the baseline and yearly eye exam for retinal damage.  I just had to have my gallbladder removed and for some reason my Rheumy also wanted me off of the plaquinel a week before and 2 wks after along with my etolodac anti-inflammitory meds. I was very glad to get back on it before symptoms started reappearing again.
Definitely be an advocate for yourself and let your Rheumy know how you feel and your needs.
Good luck and hang in there.--Net