Newly diagnosed questioning getting a new rheumy

[smcmanus24]

Hey all,

I was just diagnosed with primary Sj?gren's this week. I am 25 years old and just graduated from graduate school. My lip biopsy and blood test just all came back positive. This all started with a rash I had on my collarbones and neck that wouldn't go away. I am exhausted all the time, have pretty bad sun sensitivity, and a rash that comes and goes. I am starting on plaquenil this week but I'm questioning getting a new rheumatologist. My rheumatologist seems nice and knowledgable however, she gave me this diagnosis over the phone. After telling me I had Sj?gren's she told me to schedule a follow up for her to talk more about what the diagnosis means but I was a little put off by a 10 minute hey you have Sj?gren's schedule an appointment a week and a half later. I wasn't sure if this was normal (my gut is telling me this isn't ok) but I'm new to all of this. Up until this point I've been healthy. I am leaning towards a different rheumatologist but I have no idea how to go about this. Any suggestions, tips or help is welcomed because I'm slightly overwhelmed by this whole process. Thanks!

Shauna

[SjoDry]

It sounds like there was no sensitivity on the doctor's part in terms of delivering
a diagnosis & considering your feelings in hearing that news for the first time as a patient (and by phone). I too, would have preferred to receive that news in person first. On the other hand, if you have seen the doctor only once, I might give it awhile & then reassess. Her knowledge of Sjogren's is important, as well as all of those other positive qualities we look for in a good doc. If you see her more & you still have that same gut feeling, I would definitely keep my ears/eyes open for another Rheumy.

Good Luck.
SjoDry

[eyeamdry]

I think this is entirely in good medical manners.  Sounds like you got the news timely and I don't think you would have wanted to wait until she had her staff set up another appt.  Depending on your dr, this can take weeks even months.  I'd be thrilled for any of my drs to call me.  The best I get is a receptionist or nurse(maybe).

I would give this dr some time to see if you like her and her style.  Rheumys are hard to come by and to find one you like and who is good is almost impossible.  The first rheumy I went to told me that I had nothing more than osteoarthritis and gave me a arthritis med.  I was so sick, I could only lie on my stomach on the bed or couch.  My
GP sent me to a University Hospital an within two weeks of that dr rebuffing me, my blood proved to be positive.

You are likely to get differing opinions on this, but this board is a great resource.  Lucy

[smcmanus24]

Thanks guys I'll keep you all posted.

[Suslew]

I think a lot will depend on whether you think your rheumy is listening to your concerns and working with you.  If you do research and discuss a drug regimen or change will they discuss pros and cons with you?  Will they let you try your idea or come up with actual reasons why it's not a good idea?

My GP, bless her heart, sent me to a neurologist who found the SS-A antibodies.  He gave me me the choice of a neuropsych evaluation which showed I have impairments.  He also told me to go get a rheumy.  The rheumy didn't believe AT ALL that Sjogren's can cause neuro issues, talked to me a few minutes and sent me on my way with a DX of mild Sjogrens telling me there was no reason for lip biopsy.  I saw her 3 months later, and she prescribed Evoxac. 

Completely frustrated and sick and on STD, I sought out another Rheumy.  I am lucky enough to be close to San Francisco and was able to see Dr. Nancy Carteron (she's the doc in the Sjogren's Syndrome Foundation video).  It was the first time someone looked at my whole history, was compassionate and looked like they totally believed me.  She was shocked that I had not received any treatment outside of evoxac since my diagnosis about 9 months earlier.

I would go with your gut.  It does take a while to establish a relationship with a new doctor.  You can always start a new topic and ask for recommendations for your area while you're thinking about it.  That's what I did. 

[MaryBee7]

I agree with going with your gut.  Would make an appointment with this rheumy but also make a 2nd one with another, now rather than later.  I live in an area where there are 4 rheumies total.  I could travel to a larger city for more choices but travel isn't easy for me to do.  With the 4 in my area, it takes forever to get an appointment. 

Had I gone with my gut I wouldn't have wasted time and money on the 1st rheumy who was the most clinically cold doctor I've ever met.  Since we're dealing with a disease that may or may not develop complications, I think it's important to get a rheumy you can connect with on many levels, and don't "wait and see" if things will work out.

[Scottietottie]

Hi Shauna 

Welcome to Sjogren's world. I'm not medical but if you are starting on Plaquenil I would do it the way my rheumy told me to. Wean yourself onto it slowly starting with half a pill every second day for a week and build up from there. Always take with food. It takes ages to work anyway and weaning onto it and letting the body adjust slowly tends to minimise possible side effects.

Getting a dx that will last a lifetime is pretty daunting. I think mo0st of us were pretty shell shocked when we were told but it is better than not knowing what is wrong and the symptoms can be alleviated.

I hope you find the site useful.

Take care - Scottie 

[CMNK12]

Hey and welcome,
  I think it was nice that the doc actually called the results to you instead of you having to wait, but that's just me. I have a doc who calls me at home and I appreciate it. But that said, you have to go with how you feel and how the conversation was.
I can't tell you what to do, but a doctor who actually takes the time to call a patient himself/herself is usually a rarity. May want to at least go to the follow up and give him/her a chance to have the in depth with you.  Good luck and take care. Keep us posted. CK

[Karen13]

I would give her a try before the final decision. I like mine, but she is soooo busy that it takes months to get in. When I had my 1st appointment she diagnosed me with fibromyalgia and sent me off with a prescription and requisition to get bloodwork done. She said to book an appointment on the way out for 3 months away or I may not get in for several more months. I did my bloodwork, waited the 3 months and was finally given the Sjogren's diagnoses at the appointment.

I would really have appreciated a quick call and chance to start meds sooner as soon as she received the bloodwork results as they only take a week max to get to the Dr. I did have a heads up that the bloodwork was abnormal as I checked online, but that caused me a lot of worry of the unknown until I knew what it meant, though I did have the chance to know I would get news and so I made my husband come with me  Yes, I did have to drag him, but was sooo glad to have him there to hear her say I must rest when needed and that this is a chronic condition. She put it on pretty thick, I think almost to ensure he would get some understanding of what we were up against. So for that I am most grateful to her.

Good luck and hope things look up for you! Plaquenil has worked wonders for me.

[eyeamdry]

Again, I think a dr who calls with a diagnosis and doesn't leave you hanging in the wind to "know" is a real peach.  When I had breast cancer, that's how I got the diagnosis-over the phone from my surgeon.  I knew the second day after the biopsy and it was even faster than she told me it would be.  I was so thankful I didn't have to wait and go in for a later appointment to then find out.  It's never easy to find out you have a serious illness, but getting an early diagnosis is a good thing to me. 

Hurrah for all docs who will get on the phone and call their patients.  Lucy

[quietdynamics]

I too would have been delighted to get an actual call from the doctor. Usually, it is the generic 2 minute call from the office to make an appt to discuss test results. And the appt may be in a month or two.

I had an additional condition Dxd, and it came in letter in the mail.

Drs. investigate, test, diagnose, and treat....they are not there to commiserate.

Since SJS is chronic, this will be a new learning experience for you.

There is a great deal of information and links, questions on this site. Remember always that symptoms are unique to the individual; what one SJS experiences, develops may not happen to you.

Read about plaquinel, it does take time to have its full benefit. And read to make lifestyle adjustments to empower yourself.

Congratulations on finishing Graduate School.

[Nancy60]

I also would be thrilled to have a doctor who actually called to give me a diagnosis instead of having the nurse or office call and set up a follow up appointment (that might be weeks away) and have to wait on pins and needles wondering what the results were and not starting treatment until then. 

I don't think this is unusual for a diagnosis where there is not an imminent life threatening issue going on, and there are many here that had to wait months to get the follow up results of tests and start on treatment. 

Give her a chance and see how you like her approach over the next several months.  She does sound like she is on top of diagnosisng Sjogrens and starting treatment.

did she discuss possible Sjogren's with you at your first appointment, or was this the first time she mentioned it?

Nancy

[warmwaters]

I got my Sjogren's diagnosis over the phone from my (wonderfully) persistent primary care doctor, who was throwing test after test at me to try to figure out what was wrong.  I see the phone call as a caring thing, rather than a negative, but of course, don't know how the conversation actually went.

I'd give her a try - but continue to listen to your gut as you get involved.

I've had to walk away from two rheumies who while technically competent just didn't listen to me. One kept insisting that I exercise more, though one of my worst symptoms is fatigue. I kept explaining that if I did the regime that she asked for I was in bed for days, but she kept telling me that what I said couldn't be true. It is true, of course, and I'm now working with someone who actually believes me.

[Styx]

I was once told I had a potentially fatal disorder over the phone. I'd prefer to know right away.

Give this guy a chance. There's a lot worse out there.

Styx

[smcmanus24]

Thanks everyone for your input. This had been such a huge help reading everyone's posts and getting some positive honest feedback from people who understand what this dx means. The only reason why I pose the question is I'm about 30-45 min outside of Boston and I have the opportunity to get a rheumy in Boston who is a friend of a friend. It seems like a no brainer switching from my current rheumy to the other one in Boston but (excuse the complaining) I'm just sick of doctors appts and explaining why my fatigue is not depression. I'm all too familiar with depression and this fatigue I'm experiencing is not it. I also have a fairly physical job and (pedo SLP) and I do not have the energy for anything else my doctors insist I exercise more. I barely make it through the week with my job and I feel like I just barely have the energy to do my job well and do the minimum to maintain a personal life. I'm hoping plaquenil will help and I've started taking B12 but I just feel like there's only so much I can do.