Author Topic: New Rheumy  (Read 904 times)


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New Rheumy
« on: April 19, 2019, 07:41:14 AM »
Hi all,

Seen a couple rheumatologists since a diagnosis about 3 years ago at 28 yrs old. (I have dry eyes but mostly have non-dryness symptoms like headaches, fatigue, weight loss during flare up, rashes, etc.) The first told me straight up that I didn't have rheumatoid arthritis or lupus and that he didn't know why I was there.  :o

The second told me she doesn't have a lot of experience with primary Sjogren's and generally dismissive. Told me I didn't need to come back unless symptoms worsened. Is this right? Shouldn't I have regular bloodwork run or something (even if it's every 2-3 years)? I mean even just because I'm at higher risk of other autoimmune disorders?

I fully appreciate that my symptoms are very manageable at this point, and I'm grateful. I think I've received a really early diagnosis, and I'm worried that I'll miss out on any potential benefits of an early diagnosis if I just ignore the syndrome until it gets worse. I haven't had rheumatology bloodwork in about 2 years at this point. I'm having another flare up (eyes drier than normal, skin rash, fatigue), and I made an appointment (for September) at the UPenn Sjogren's program since I live right outside of Philly. Is this overkill? Are they going to laugh me out of the office?! And I'll be paying a ton because Penn is "Tier 3" in my tiered insurance plan.

I'd be going for a trustworthy opinion on what I should be doing right now, mostly for my own peace of mind. With your experience and what you've learned about Sjogren's, do you think it's OK to just wait and not monitor it at all? Would going to a Sjogren's program at this point be a waste of their time and my money? Or is there a way to have a plan and be proactive even when symptoms aren't as severe as they could be?

Sorry for the book!



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Re: New Rheumy
« Reply #1 on: April 19, 2019, 06:55:08 PM »
I think you have made a good decision. However, if this doesn't work out I would suggest that you see an immunologist as they deal with autoimmune issues most of the time. They also deal with allergies and immune deficiencies and these 3 diseases are all closely related. The one thing I would suggest when finding an immunologist is to ask the receptionist if the immunologist treats autoimmune. The reason I say this is because my clinic has an immunologist who only treats allergies cause that is what he likes to work with.

I would guess that going to a rheumy at an educational facility would give you more options for different specialists. I am so sorry you have to wait to long though. Hope yoyo can stay fairly healthy til then. Good luck and for sure let us know if you are pleased with the results. Irish


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Re: New Rheumy
« Reply #2 on: April 23, 2019, 12:39:33 PM »
This is just me, but...

I would highly encourage that you talk to your doctor about a medication that mutes B-Cell hyperactivity associated with Sjogrens (i.e. Rituximab).  Glandular function and innervation (or lack thereof) does not necessarily correlate with overall health (formation of germinal centers, lymphocytic lesions, swelling, etc.).  So while your symptoms may be mild, overall health of the glands could be trending worse than their function lets on.  Starting such a medication can preserve residual glandular function, improve fatigue, joint pain, neuropathy (at least from accounts of others), and improve other biological markers at play in SJS.

If you do, yes... you will want to have periodic surveillance lab work (blood count panels, kidney/liver function tests) done.  Also, with Plaquenil... periodic visual field testing is necessary to catch onset of macula degeneration/retina issues (semi-rare occurrence that occurred at higher dosing levels).

I also recommend you get sonographs (maybe annually or biannually) of your parotid/submandibular glands to help stage disease activity and assess efficacy of treatment.
« Last Edit: April 23, 2019, 12:41:58 PM by markt »


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Re: New Rheumy
« Reply #3 on: April 25, 2019, 04:35:30 PM »
I couldn't find a rheumy to do anything. Gave up on them years ago.
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease


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Re: New Rheumy
« Reply #4 on: May 20, 2019, 02:30:03 PM »
Hi Kris

Going to UPenn is a good idea since it is close to you. You will at a minimum find doctors who can answer your questions and explain your options. Closer to the date you might contact the office you are going to to see if they would like you to have bloodwork done in advance of the visit.

It is true that autoimmune diseases tend to evolve over the years into more. Typical bloodwork for SJS after diagnosis is a CBC, thyroid tests, metabolic panel, liver and kidney tests, C3, C4 CRP.  I have them once a year.   The antibody test levels once positive do not always correlate with how "serious" the symptoms.  So those are not typically done often, the information value is less.

The typical first line treatment for SJS is Plaquenil. It is an anti malarial drug that just happens to slow progression of the disease.    Do you have an eye doctor?  If yes he./she can do a Shrimmers test for eye dryness. There is a prescription eyedrop "Restasis" that is taken twice a day (8 hours apart or so) and it tamps down inflammation so the symptoms are much less.  You need an ophthalmologist to scan your retina every year to be sure there is not reaction to the Plaquenil if that is eventually prescribed. . It is a simple scan. Most rheumatologists will not renew the plaquenil prescription without the eye doc sign off.   Typically this is a not an issue unless you have been on the drug for over a dozen years. (like me). Although I am still fine,.

You may have a thyroid issue which could need meds.  But remember every drug out there has potential side effects.   You are young and (I am no longer...although I got my first AI disease at 27) if I were you I would take it slow on the meds.   You may find that the Plaquenil solves some of your symptoms.

Most of us show what we take in our tag lines.   

While some with SJS have truly difficult symptoms, many take minimal meds and focus more on treating the symptoms, while seeing their doctor once a year.   Remember the subset of people that would tend to be on a forum are those with more active forms of the disease.

Let us know how it goes. There is also a Sjogrens Foundation Website and some good books available to help you learn about people Live with SJS.
Hashimotos thyroiditis, Primary SJS, IBS, autoimmune hearing loss, leucopenia, arthritis,asthma.
Synthroid, Plaquenil, Crestor, Evoxac,Vit D , Fish Oil, Restasis, Daily Walking, Sleep, Baby aspirin, Probiotic, avoid gluten,dairy and sugar, hearing aide, gratitude, big dog