What would you do?

[aussie mum]

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 

Good luck and I hope you find answers and treatment soon.

[AnneNeville]

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.

[helloz]

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.

[DarleneB]

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.

[AnneNeville]

I am really sorry you're having such a hard time finding a doctor who can and will help you.

[helloz]

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!

[helloz]

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.

[helloz]

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.

[irish]

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

[katie1111]

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

[helloz]

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.

[helloz]

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

[Carolina]

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

[Scottietottie]

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