What would you really do

[Cindy]

I know everybody is different and we make our own decisions but what would you really do if you were in a similar situation. As you know Im 28, the only symptom that I had for the past years was flares of joint pains. They would last 4-6 weeks and then be gone for months, that was it until this February when dry eyes, mouth, burning skin, and more appeared. My blood tests are completly negative. I love my rheumy she is really young seems to know very well about sjogrens, she really believes I have sjogrens. I can freely tell her all my fears, the only thing is that she is really pushing the lip biopsy, I asked her about plaquenil and she told me that she does not think I need it just yet becuase I dont have constant joint pain and fatigue which are the main reasons of plaquenil in sjogrens patients, which I agree why taking medicine now when I know that at some point I will need to take medicine for the rest of my long life. Here is my dilemma. I dont want to do the lip biopsy just yet, my reasons, well I consider that I dont have strong symptoms yet and Im one of those persons that cant stop thinking about the future and all the what ifs, the risk of having a inconclusive result is higher now that later when I have more symptoms. Lately I been strong and with the help of my eyes drops that had helped a lot I  have been able to live an almost normal life . I know my self and I know that putting an diagnosis in my patient chart will put me in a huge depression and I will be waiting to get worst instead of enjoying my 2 kids. So, I decided to wait on the lip biopsy until I have stronger symptoms and I need an official diagnosis. I know I can get worst in a matter of days but I want to enjoy my kids and knowing that Im officially disgnose will change my way of thinking. What would you do?  Thanks for listening you are my only true friends that understand me. My parents support my decision but the one that needs to support does not, my husband wants the lip bipsy he wants to know.

[irish]

I say wait for the lip biopsy until the time is right. It might be that your blood work will convert to positive before then and you (and the doctor) won't feel the pressure to do the lip biopsy.

She should be treating your symptoms anyway. Has she ruled out RA??? Just to make sure that you are not having  RA as your primary autoimmune disease and sjogrens as the secondary. Just curious.

So often the pain and swelling in the joints with the sjogrens makes one think it is RA. Supposedly the sjogrens isn't supposed to damage the joints as badly.  I would not be surprised if that opinion is changed somewhere down the line.

Good luck. Irish

[Piebird]

The lip biopsy is not always 100%. There is no one test for Sjogrens diagnosis. That is why it is called a syndrome. It is a group of symptoms.

Diagnosis can be helpful for medical paperwork but a definitive answer is not always there in AI problems.

If tests come back positive, then you have it.
If tests come back negative, then you still might have it.

A positive result might be proof to folks who dont believe you,  but a negative result might make them think you dont have it and you still might!

I have had a lip biopsy, although knowing what I know now I am not sure I would have done it. For me the important thing is not the diagnosis but getting help dealing with the symptoms no matter what the official diagnosis.

[rudytudy]

I agree, you'll know when the time is right...just enjoy your life and keep getting bloodwork labs as needed.  Treat your symptoms and try your best to forget about the SJS.  You're very blessed to have children and I wish the best for you.

[quietdynamics]

I never had the lip biopsy. I was Dx'd through blood work.

"As you know Im 28, the only symptom that I had for the past years was flares of joint pains. They would last 4-6 weeks and then be gone for months"

Just a pro-active suggestion: If you are near a YMCA they have swimming classes, water exercise classes, Mommy and child ones too,... the pool is heated and moving around in the water is great for joints. Giving enough resistance without harm.

If you get a referral for physical therapy your medical insurance may cover it. 

[Skylar]

I agree, I think you are wise to wait on this action. I've never had a lip biopsy, diagnosed without it.

[Dolly Dimples]

Cindy, as always, some very good advice from Irish.
                I'd just like to add that it is down to you,  and not your hubby, Parents or even your Doctor to decide wether or not to have lip biopsy. I know I would have it only as a last resort.    Follow your own instinct.
                      Dolly x

[AAACGRL]

My lab work only showed a high SED rate and high CRP rate, plus Vitamin B and D deficiency and hypothyroidism.  I had severe joint pain (yet now visible swelling), severe fatigue, dry mouth and eyes. The dry mouth/eyes were confirmed by a eye dr that mainly treats auto immune patients and an ENT. My Rheumy has followed me for a year and with all the reports, xrays, pathology stuff he has dx'd me w/ Sjogrens about a week or so ago. I asked if he wanted to do a lip bx or a salivary scan and he said "No. I'm already treating you for it and I'm very confident this is what's going on." So, if you feel your needs are getting met then yeah I can see why you want to wait. I've read too that you need a specialized pathologist to look at the pathology slides because not everyone knows how to really look for Sjogrens.

[vtmommy]

I'm 32 and a mother of 2 young children.  If you're at the point where you can deal with your symptoms and live a relatively normal life, then I'd say don't get the lip biopsy at this time.  When you get to the point where your fatigue and joint pain are awful and you'd need the lip biopsy to get Plaquenil, then do it then.  If you can get plaquenil at that time without a biopsy, then I'd say skip the biopsy all together.  As long as you have a rheumy who actually believes that you have this condition (which is pretty rare without positive blood work it seems) and is willing to help you, I don't see the point of going through a procedure that could potentially leave you with numbness.

In terms of your husband needing an answer, it's really your decision and not his.  I tend to be pretty logical about this type of thing and look at the pros and cons of getting that "official" diagnosis.  Keep in mind that once you have an "official" diagnosis, then you have to disclose that on any future applications you submit for life insurance.  This could lead to rejections or higher premiums.  However, having an "official" diagnosis also lends more credibility for your case if you need to go out on disability for one reason or another, or if you need to see another specialist who isn't quite as accepting as your current rheumy. 

It's a hard decision to make, but it's one you'll need to make for yourself based upon how you feel.  Good luck!

[jazzlover]

I will NOT get a lip biopsy. NOPE.

[prunella]

What jazzlover said. Nope. Not me.

The purpose of diagnosis should be to indicate treatment.  Not to gather unnecessary data, which may or may not be accurate.

beth

[Sven]

I asked if he wanted to do a lip bx or a salivary scan and he said "No. I'm already treating you for it and I'm very confident this is what's going on."

My doctor is rather certain I dont have Sjs because a salivary scan (scintigraphy) showed that my salvary glands functioned normaly when they were stimulated.

If tests come back positive, then you have it.
If tests come back negative, then you still might have it.

And if this is right then my doctor is wrong and he is supposed to be the best there is in this country (not US) and says he has almost 400 patiens with Sjs. And I think he is wrong because I have every "normal" symptom.

Is there ANY test were you can (almost) rule out Sjs?

[Sadie963]

Hi Cindy,

I was diagnosed 13yrs ago with Sjogren's through my blood work and was never asked to have a lip biopsy or a Schirmer's test for my dry eyes.

I had on/off joint pain swelling for short periods of time but none of it impaired my daily schedule or quality of life. At that time, the rheumatologist wanted to put me on a low dose of methotrexate to control the sjs. I said no because my symptoms were mild and I did not want to take such a strong drug. I then would see the rheum every 6 mos for blood tests and checkup which were fine.

After having a severe flare, I am now taking Plaquenil for last yr and a half which is a milder drug and has less side effects than methotrexate. They initially thought I would have to start taking Imuran but my blood tests returned to normal levels and the dr. preferred to use a milder drug now and save the stronger drugs, if needed for later.

Having a good communication with your dr is important and I would continue to follow your instincts. Let her know what your plans are and be open to discussion if anything changes in the future.

Take care,

Sadie

[genko_b]

I never had a lip biopsy and have been diagnosed with Sjogren's for decades now, based on blood work and Schirmer's test. But I was diagnosed with RA first, so Sjogren's was a much more likely diagnosis after that. I would support waiting on the lip biopsy - you may not need it and a lip biopsy can have its own problems.

Irish is right that you may want to see if the joint issues are RA. You want to treat that aggressively because the joint damage can be greater than with Sjogren's (at least according to the rheumies who have treated me).

Take care,

Genko