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
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
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.
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 :)
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.
Thanks - Yes RNP antibody is negative a couple months ago.
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.
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
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?
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.
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.
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.
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.
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.
Google "Mast Cell Activation Syndrome"
Quote from: helloz on March 21, 2017, 01:57:04 PM
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.
Is an allergist is the same as an immunologist??
My daughter was diagnosed and is treated by an immunologist who is also a supervising pathologist. He actually looks at her blood samples which I think is cool ;D
Good luck and I hope you find answers and treatment soon.
I've been getting immunotherapy shots from an allergist for the last year and a half+ (before getting diagnosed with Sjogren's). It really improved the quality of my life.
Ok team, well I had a follow up with the same Rheum and...different day, same story. She doesn't want to prescribe plaquenil (even though it worked for me before), and didn't want to do anything besides evoxac because she saw "no signs of autoimmune condition." Ha! I almost laughed.
Next effort is going to be contacting the out of state doc about making a trip to see her.
I also was negative on the normal blood work...same as 5 years ago..but my new rheumatologist ran an Early Sjogrens Syndrome Profile blood test and on those tests came back positive for 2/9 of the tests and now have a sjogrens diagnoses.
I am really sorry you're having such a hard time finding a doctor who can and will help you.
i have an appointment with the out-of-state doc next week, fingers crossed. still no sinusitis/ infections since starting evoxac about 2 months ago!
to all of you not yet getting help, hang in there and keep looking for a better doctor. i had a great visit with the out of state pcp doc and was prescribed plaquenil. not sure if it will help as much as last time or not, but hopeful.
doc said humanity has made a lot of progress in the last 100 years, but unfortunately there is still so much we dont know about human disease and so much we dont know how to test for. sometimes this means we have to try something out to see if it will help (weighing the risks).
i think almost all doctors are well meaning, but not all doctors "know what they don't know."
will try to let you all know how things go.
UPDATE
Docs are not diagnosing me with anything, but Evoxac still seems to be doing the trick. One of my main problems were continuous sinus infections, and I haven't had one for about 6 months (except a cold in there some time). I haven't had that long of a run for 10 years. So crazy that docs were treating me for years as if the problem was excess mucus, when the opposite seems to be true.
I did start taking Plaquenil in hopes of improving joint and fatigue issues, and I cannot say for sure that it is the thing that is helping but I have been able to start exercising and rebuilding a bit of strength and endurance.
I also did a mostly AIP diet for about 2 months. Again, no way to know if that was helpful but I did lose some body fat - and surely getting more fruits and vegetables couldn't be a bad thing. The key for me was using a blender to reduce the amount of chewing so smoothies for breakfast, chopped salads for lunch, then mostly grilling for dinner.
To improve sleep, for me it was drinking most of my liquids earlier in the day (so I didn't have to get up as often during the night), cut out caffeine around mid day, and exercise. Then every now and then I use Tylenol PM.
Mouth and sinuses are still drier than I would like, still have some joint pains for sure, but seem to be headed in a better direction.
Glad that you are doing better. Now that you have things settled down the only thing I can add is to see an immunologist and ask to have testing for low IgG levels or any other blood work that tests how well your immune system is working. These parts of the blood are the ones that help protect us from infection. Many people with autoimmune disease also have immune disorders plus allergies and immunologists can test for all of these issues. Good luck. Irish
Don't give up. I am sero and biopsy negative. My hepatologist (I also have PBC) says I have "symptoms consistent with Sjogen's, which was enough for my Primary to prescribe Plaquenil which made a big difference. My Primary said that it showed something autoimmune was going on. He is not concerned with the specific autoimmune issue but just glad he found a medication that works. My dentist says I have a "Sjogren's mouth" and my eye doctor is treating me as if I have Sjogren's. The fact is I am having more Sjogren symptoms than PBC, although I meet the criteria for PBC. Basically my body is doing it's own thing.
Katie1111
Thanks Irish and Katie! Katie it sounds like you have a good PCP as well. I don't know what my next step would have been if I did not reconnect with my old Primary Care Physician. Rheums were not good around here, most PCPs around here are 3 month waiting period for new patient and then who knows if they will treat me with anything without the classical blood results.
Irish I did have the IgG tests about 5 years ago and my immune system was fine back then, but probably wouldn't hurt to have new testing done. Can't wait to see where things are in 6 months if I can avoid sinus infections, keep exercising, do some physical therapy for my upper back, etc.
Really enjoy this forum so I wanted to give a quick update, things are still going well. Amazing how much easier things are now that I know dryness is the main problem and not allergies/etc.
No sickness since early in the year.
How I am treating things:
* Daily saline nasal rinse
* Evoxac 2-3x per day
* Installed a whole home humidifier that only turns on when the heat comes on
* Quit red meat, eating more fruits and vegetables
* Started exercising, making very slow progress...but progress
Thanks, helloz, for the update.
Keep posting, and reading. It is so helpful when we find ways, such as those you listed, to manage our dryness.
And I find that exercise, at the level that is manageable, is key to my sense of well being.
I am essentially a sloth at heart, always have been. But I get up and get going when I can (I don't drive and can't walk at all for exercise, so must go to our fitness center).
My husband now understands how crucial exercise is to his sense of well being. And he uses the whirlpool (103 degrees) which eases the pain of his arthritis, as well.
Regards, Elaine
Hi :)
The main thing is to get the symptoms treated. If its SjS you are stuck with it but treating symptoms effectively can make a big difference. Insist that doctors try to do that at least!
Take care - Scottie :)