Provider recommendations (Indiana/Midwest)

[whatnow]

I am newly diagnosed (destroyed parotid and submandibular glands, positive SSA and SSB, positive shirmer's), and new to SW forums. I don't know if I can ask for care giver recommendations on these boards, but I also did not see any lists of specialists, so I thought I would give it the old college try.

Background: My rheumy seems knowledgeable, but I am so much more miserable than she seems to understand-I actually filed for disability but was denied.  I am having trouble now even working temporary occasional jobs. I previously worked 100 hour weeks running a business while raising a child alone. Now, some days I have to nap after showering. The fatigue is inexplicable, I have "complex" migraines (with visual and other types of auras), daily headaches, problems with my gut every day, and the typical eye/mouth symptoms too. My biggest problems are with my eyes and sensitivity to light. I am also a breast cancer survivor and I even question whether that might have somehow been related (it was in the ducts, and they are moisture producing gland?).

So my question is: If you have made the trek to a specialist center (i.e. Johns Hopkins or similar), do you feel it was worthwhile? My rheumy has done a lot of blood tests (many of which turned out wonky, such as false positives, due to the SJ), but that is it. She has me on Exovac (changed from Pilocarpine), but that is it. She wants to treat the one symptom I came in for (jaw pain), but nothing systemic. I do not want to jump into "big" medicines either, but I am SO SO miserable that I would be happy to try anything. She says come back in 6 months, but I say how to I get through tomorrow. If I can prove extraglandular symptoms, I may be able to be reconsidered for disability (I have been living off what was supposed to be my retirement fund and that is nearly gone).

Do I go to a specialty center? Do I look for a new rheumy? Does anyone know of a SJ specialist near Indianapolis or even the Midwest? I would love a one stop shop where I could see an ophthalmologist, neuro, ENT, gastro - and that sounds like only Johns Hopkins.

Sorry to be so long.

[Joe S.]

Welcome to the forum. We typically, as I understand, not allowed to give recommendations to providers. Some of us have placed in our signature what we are taking and you can check those out on the internet. Before trying anything please check for interactions, side effects, and counter indications. When in doubt check with your health care professional.

Moving on, I believe that the Mayo Clinics still do not believe in Auto Immune diseases. Some Universities have good Rheumys and related clinics, some do not. I think John Hopkins has a special clinic for Sjogrens. I have never been there. If you are thinking of one you can search the name in the forum for notes.

Most of us will respond to PM's. There are some websites that may help you understand this disease and the medications that are recommended.

[Navigator]

Hi

I am not a big fan of ?big? medicine unless I need it.  You can see what I am taking below and it is pretty entry level stuff.  I have been able to manage for over 15 years so far.   You mentioned fatigue....and ?wonky? blood tests.  Any of those thyroid tests? 

You might look into Cleveland Clinic if you want something closer than Baltimore.  They have access to multiple specialists.  I go to them now in Fl. because I too wanted my referrals all in one place.  But that is not the only option.   People say look for doctors affiliated with teaching hospitals or that trained at major medical centers.  That is a lot of options.

[markt]

I have been to Hopkins and highly recommend them; they were the first to diagnose and treat me...this is after visiting a succession of Rheumatologists (in midst of my first flare) that said I did not have Sjogrens because I do not fit the text book definition...and would have essentially left me for dead.

Fact is, this is a niche disease with wide array of presentation.  This clinic has specialists that understand and test for the nuances of Sjogrens that ordinary practices are unfamiliar with...

Given that you know you have it, and that it has done a number on you over time without systemic intervention...I am not too sure what they may do for you though.  Scleral lenses, secreatlogues, serum tears, biologics...just depends.  They may even find other things that require attention.

These folks are the most likely outfit to do things that will improve your circumstances without a doubt though... They have been in my case.  Appointment waits right now are about 02 months out.

[cccourt1942]

Reread Markt's message.  It has some newer suggestions in it such as scleral lenses.  I couldn't put anything in my eyes if I were forced!  She also mentions serum tears.  I have a friend who cannot tolerate Restasis, so does the blood draw and drops from her blood serum.  On this forum I've heard of many who prefer this.  I am in the midst of recovering from my 1st cataract surgery.  That eye is driving me crazy.  DROPs...eyedrops post surgery!  My eye felt bruised the next a.m. (and I chose laser, not physician cut).  The ophthal says "dryness".  Well, since you mentioned your destroyed parotid and submandibular glands (mine were atrophied when I was diagnosed too)...it is likely your lacrimal glands are atrophied too.  Mine were. I have a feeling I was MUCH older than you when diagnosed:  age 71!  So that in itself will tell you it is possible to go on with all that discomfort. Though I was retired, I was still working 4 to 6 hours a day for 3 to 4 days a week.  It was HARD.  I thought I was old. I was.  But the debilitating factor was the SjS.  Back to the post cataract prob, I KNOW it's the SjS causing the dryness which is giving me such discomfort. It's primarily at night.  I'm almost two weeks out...and next week I have the other one done. Now I am dreading it.  I have been told the post cataract drops can irritate "our" eyes too...as well as normal eyes. I guess i'm saying it seems like an innocuous surgery, but: it's STILL surgery!!

It sounds as if you are asking if a "specialty" center can either a) restore you to your former self w' medications, treatment, or b) will further diagnosis or facility/physicians can help you obtain disability.  I have no idea.  Maybe others can help you with that--IF that is one of your questions.

The "jaw pain" is still the sialadenitis...the sludge in your parotids which cannot exit your duct.  This physical occurrence is what Sjogren's is.  The B cells turn against your body...attacking moisture glands and joint moisture.  The restasis has helped my eye covering (I haven't shed a tear inn nearly 30 years...I'm 76 now)  I use Pilocarpine...it took me over a year to get the dosage just right.  It was worth it.  In the beginning the med tore my stomach up.  I checked out side effects...followed that info....finally got it right.  The rheumy just listened to me...and told me to keep working with it since it was working.  At this point in time I am giving myself Methotrexate injections once a week.  I've recently had hip replacement as well..so it's hard to know if the Metho is truly helping me with joint pain.   

If you are as young as I think you are, you WILL have good days, months and years.  This is something you will hear in this forum over and over.  When I retired in early 60s I thought I would retire and be dead in a year.  Two years later I was working part time---in my field!  I am saying this as life DOES go on.


Best wishes to you...sorry you found us...but: you did find THE source with the most helpful, informed, and knowledgeable SjS group anywhere.

Courtenay

[irish]

You have been diagnosed with Sjogrens but you are not being treated. You are getting a med for the dry mouth. The first drug of choice for Sjogrens is Plaquenil. This is a drug that is used for malaria but was found many years ago that it works well with some of the autoimmune diseases at a much lower dose. Plaquenil can help some with the dryness of mouth and eyes but this is not the case most of the time.

It does help a whole lot with the general aches and pains of Sjogrens and it helps with the fatigue. It might even help with your headaches. I am no expert, but I think you would profit from going to J. Hopkins. They have a Sjogrens department and a great neurologist who is also a rheumatologist and others from this site have seen him.

You are suffering so much that I think you need a really good checkup that also tests you for lupus and other autoimmune diseases. Headaches are common in lupus also. The other thing that might help is an antidepressant. This is worth checking into. Anyone who has a chronic disease usually has a chance of having depression. People with Sjogrens have a high rate of depression and anxiety and with the use of some antidepressants they usually find that they sleep better and as a result they feel better.

Depression is the shortage of the chemicals secreted in the brain. I have this crazy theory that it is possible to have less serotonin, norepinephrine or dopamine due to Sjogrens and this is what causes us to have more of the symptoms. You owe it to yourself to get a good work up and get some help. I think that your rheumatologist has not done you any favors. I find it hard to believe that he/she has not offered you Plaquenil.

I will add that the Plaquenil can cause some eye problems at times. This is not common and was more common in the malaria patients who were on higher dosages of the med. Sjogrens patients who take Plaquenil need a special eye exam prior to starting the Plaquenil and then a checkup once a year.

I just had my yearly checkup done. My daughter in law is an optometrist with a very great interest in Sjogrens and autoimmune eye diseases brought on by marrying my youngest son!!!.She was to the state optometrists meeting this year and they had a presentation put on by eye specialists who deal with Plaquenil a lot. The latest info is that the eye issues have been over diagnosed as due to Plaquenil when they have, in fact, been eye issues attributed to other problems. She showed me how they sort out and find the retina damage on the scans and how the over diagnosing of the eye issues can occur.

It was very interesting. With the newer scans they can see the damage much easier and it was discovered that some eye docs were not as proficient in diagnosing Plaquenil retina damage. One needs to have a second opinion with an eye doc who is very proficient in this issue if plaquenil damage is suspected. The bad thing about Plaquenil being blamed is that people have to quit taking it and then they suffering becomes worse.

I have to add that I know that you are suffering a lot and yet I feel that with the proper medical care there is hope for a brighter future. The increased experience and knowledge of these Hopkins docs most likely will increase your ability to have a better life.

All of us with Sjogrens and other autoimmune diseases know that life has a whole lot of ups and downs, but it helps to have a medical team who will work harder at keeping you comfortable and not just send you on your way to suffer for another 6 months. Good luck and find someone to help you with appointments if possible. Maybe the social worker in your area/clinic could help or a friend who works in the medical field. A referral is often needed and I would think your Rheumatologist would give you one. Keep us informed. Irish

[whatnow]

Thanks everyone for all your information and your time. I am just in worse shape than I ever seem to be able to make my docs understand. I am always very stoic. But my teeth hurt so much I cry almost every day, and A short trip to doc will wear me out so I need naps. I sometimes have to nap after a shower. My visual problems are daily. My rheumy hasnt done any blood tests for concommittant disease, but my liver tests are up and sed rate of course, absolute lymphocytes are about to drop into abnormal range. I have gastro pain every day. I had cancer and it was nothing like this. I was hoping for a specialist near me, but I guess I am finding that doesnt exist. No job, little insurance, and I am overwhelmed. I guess I will just keep loooking around for a specialist. I live in a big city and I thught there would be a specialist somewhere. But Thanks anyway to you all.