What would you do?

[helloz]

No doc has diagnosed me with anything.  Bloodwork negative except a couple of pos. ANA 1:40 speckled, positive Schirmer's test (dry eyes), some arthritic joint stuff in x-rays.  Lip biopsy negative.

Dry mouth/nose/eyes, but my biggest symptom complaint was chronic sinus infections until just recently (chronic as in constant, without end unless I was currently taking an antibiotic). Rheum prescribed evoxac and no problems with sinus infections since.  Now that that one has been taken care of (for now), biggest issue is joint pain/fatigue, but with bloodwork and lip biopsy negative, doc will not prescribe Plaq.  I was on Plaq 15 years ago for about 6 months and I liked it, but decided to stop because I was young and I was trying to not be on a med forever so I went the extreme healthy living route, supplements, etc.  That never worked great, but ok.  Some supplements like Vitamin D, CoQ10, Ubiquinol make me feel worse.

Joint pains have definitely increased over the years.  Now they prescribe anti-inflammatories like Mobic, and those don't seem to help much.  Just not sure what direction to go now...try another rheum to see if they'll try Plaq, do nothing and deal with the constant multiple joints pain?  Any other tests to rule out other conditions?

Have any of you been diagnosed with Sjogren's with negative bloodwork and negative lip biopsy?

Thanks in Advance

[Joe S.]

Welcome. I have no idea what you may have. I got a Dx by asking my Dr "Dry eyes, nose, mouth, skin, and "bum", what do you think it is?"

If you think this is what you have you my try D3, Omega-3, Tart cherry extract, R-Lipoic Acid, Acetyl-L-Carnitine, Curcummin, Bosweillia, and Carrot Juice; to help you with your life style.

Before trying anything look for counter indications, side effects, and drug interactions

[Sharon]

Welcome to the group helloz!
Others here have been treated even with negative biopsy and blood tests.
You have positive ANA which means autoimmune disease in any case.
Plaquenil is precribed for other AI conditions as well so even if they're not certain which AI you have
you should be able to get it.
You can try ruling out RA (can explain dry mouth and joint issues) with an anti-ccp blood tests which is most accurate,
but it will probably come back negative in your case.
I would just go to another and another and another rheumatologist until I found one willing to prescribe the med I thought would help.

[helloz]

Very helpful, thanks for both replies.  The 3 rheum's I've seen (once each) over the last 5 years scoff at my positive ANA tests, they say its not really positive, and your dryness is just dryness, and your joint pains may just be normal arthritis, and your foot issue is probably just something normal, and your sinus infections - let's just put you on long term antibiotics.

I checked and my anti-ccp was negative a couple months ago. 

Any tips for when I go back to the Rheum to convince her I should try Plaq?  She said I may have osteo-arthritis, so I found a study that says Plaq is also helpful for that and thought I might bring it up on the next visit...but just curious if you guys have any other advice on how to convince the doc to let me try Plaq again.

Thanks

[Tharrell]

Hi helloz. Has the doctor run a  RNP antibody test? Being positive with that one plus ana and no other positive blood work would put you in to Mixed Connective Tissue disease. Mctd is an overlap disease of lupus, scleroderma, ra, dermatomyositis, polymiositis and sjogren's can be part of that as well.
I just have severe progressive osteoarthritis and can't say the plaquenil is slowing that down.

[helloz]

Thanks - Yes RNP antibody is negative a couple months ago.

[Tharrell]

My RNP took two 1/2 years to go from negative to positive. I know it's frustrating, but persevere. You need to find a doctor who is willing to treat your symptoms, not your blood work. It took me a few rheumatologist to find one that finally treated me before the blood work turned positive.

[Kathy57]

I am seronegative but my Rheumatologist has been treating me since 2015.  I feel much better.

You should be able to get help for your SICCA symptoms.  Don't give up.  I saw so many doctor's that just blew me off but I finally got my good doctor!

If a doctor refuses to believe that you are sick, then how can they help you?!  That's my attitude now.  Keep the doctor until you find another one!  Ask around to find a competent Rheumatologist.

Hang in there!
Kathy

[AnneNeville]

I have been diagnosed with Sjogren's. I am negative for the antibodies. I was diagnosed based on symptoms plus my T4 levels being lower than they should be. I'm being treated with Prednisone (for the short term) and Plaquenil (for who knows how long).

Maybe you should look for a more responsive doctor?

[SjoGirl]

Have they tested your SSA and SSB? My SSB was positive and I had positive ANA when I first became ill, but negative lip biopsy. One doc at Hopkins said that I had Undifferentiated Connective Tissue Disease, my rheumy here at the time said SjS.

I can't take Plaquenil so use drugs to treat symptoms.

I will say that I have learned that most of my joint issues are osteoarthritis, and I have I have it from the top to the bottom of my spine.

[helloz]

Ya, SSA and SSB were both less than .2, so negative.

I think you all are right, I need to keep trying new docs until I find a good one, one that is more intelligent and more knowledgable.  The doc that treated me with Plaquenil years ago was not a Rheum but a primary care physician, she was just very smart.  Unfortunately she is in another state or I would just go back to her.

In the meantime I am going to try and go back to this local Rheum one more time and let her know Evoxac has solved my sinus issues which should be another data point to suggest there is an auto-immune condition causing all of the issues.

[aussie mum]

The "joy" of auto-immune illnesses is that it is possible to test negative and still have the disease.

If you've had the runaround by your local Rheumatologists, I suggest trying an Immunologist instead.

Wishing you all the best.

[jazzlover]

Curcumin helps my pain .. someone else mentioned it too.

Google OXALATES .. they can cause a lot of pain in the joints, not to mention in the kidneys. There's a very good FB group called Trying Low Oxalates.

My pain is much better if I stay away from foods containing oxalates .. also any nightshades.

[helloz]

Thanks for the diet and supplement tips.  I had previously used a combo of bromelain, quercetin and vit c that was helpful, but it seems that over the last 3-5 years supplements have started causing some negative results/reactions. 

Today I remembered that I had a lung xray about a year ago that showed a "few prominent interstitial markings."

It seems like I've read that could also be related to Sjogren's does that sound right?  Just trying to get my ducks in a row before my next rheum appt.

Re: immunologists, I have kept a few allergists and ENTs in business over the last 10 years or so .  I tried to solve this from a structural and allergic perspective for several years, to no avail.

Looking at the glass half full, one month into evoxac and my allergy/sinus issues have been pretty much nonexistent now.

[jazzlover]

Google "Mast Cell Activation Syndrome"