Where did your doctor start?

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pennstate71
Regular Member


Date Joined Mar 2010
Total Posts : 90
   Posted 8/9/2010 12:26 PM (GMT -7)   
So I know some of you know I am very new to lupus and recently started plaquenil.  Well my original appointment to even see this rheumatologist was almost 6 months.  Spent very little time with her - then she ordered the tests, made the diagnosis, started me on plaquenil, said to call her in a month and she'd see me in 5 months.
 
So - when we heard the wait was 6 months, my regular doctor ran a bunch of tests and discovered my Fibro and CFIDS (which the rheumatologist confirmed as well).  Now she asked for an appointment this week where she told me to have them set aside 30 minutes (the normal appt time is 10 minutes).  I'm 26 and this doctor has been treating me sine I was about 7 years old.  I've been through chronic tonsillitis, a tonsillectomy, knee surgery, chronic sinusitis, adrenalectomy, gallbladder surgery, appendectomy, ulcers, cysts, IC, IBS, chronic kidney infections, heart murmur, severe migraines, etc. all with her.
 
Now my question for you is where did your doctors start...and did your PCP get involved?  I understand this medicine can take a while to kick in but this rheumatologist doesn't know the amount of heart/kidney, etc. problems and pain I've already had for the last 18 or so years and if there are tests I can do now instead of later I'd like to get them done...all of them that I may need since I didn't start on any other meds.  IF i can prevent anything - and this doctor knows the most about me - should I suggest getting some testing done, which I'm pretty sure shes going to suggest anyway, or just leave it up to the rheumy and wait?  How did you guys start out...just waiting? Or were you proactive?  I'm not very good at sitting around if there's more I could be doing...especially to help my organs..
 
Thanks so much!

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 8/9/2010 2:37 PM (GMT -7)   
Did I understand this correctly?
You had to wait 6 months for an initial appointment with a Rhuemy-she spent very little time with you and now you aren't seeing her again for 6 months?

Get a new rhuemy ASAP.

pennstate71
Regular Member


Date Joined Mar 2010
Total Posts : 90
   Posted 8/9/2010 9:20 PM (GMT -7)   
Well I guess it wasn't that cut and dry...it was about March when I got the referral and the earliest for new patients was June...but then it so happened she was on vacation so it was pushed back to July.  It's a big medical system and also a teaching hospital.  In any case, I'm supposed to keep up with her by phone, which is nice because I don't have to pay the copay.  I am in the process of gathering all of my medical records in regard to CTs, xrays, ultrasounds, surgeries ,etc. for the past 4 years so she wants to take a look at that too.  Then schedule an eye doc. appointment and keep in check until I go back in December.
 
It just for me...because my medical file since I was 8 is about 3 inches thick by now...my doctor knows me best and is probably as anxious as i am to get started on visiting some specialists since she knows more about the actual problems....I just didn't know if anyone thought it was too early to ask for some of my organs to be checked?  I can deal with symptoms and arthritis and muscle pain as I have fibromyalgia - although the headaches have worsened since the plaquenil...but if it helps that's fine.
 
I just have had chronic kidney infections with stones in my left kidney and constant pain in my right...sometimes excrutiating with blood when I urinate.  Then my heart murmur and I haven't seen my cardiologist since I was 18....my liver enzymes have been steadily elevated and this whole sharp pain when I breathe deep thing - plus like 7 bouts of the hiccups in the last 2 weeks which I never get which I don't know if that has to do with anything aside from being annoying! haha.
 
So anyways I don't know if I'm being overly paranoid about wanting these tests done now instead of 5 months from now after we see if the med starts working...what's done is done up to this point so I'd rather find out sooner?  What kind of tests did they run?

FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 8/9/2010 10:52 PM (GMT -7)   
Usually I lurk, but this hits a bit close to home. First, I am sorry you have been having so many problems - and you are so young! My PCP and my allergist are my two go to doctors. I had a rheumy that I trusted and adored (after 3 others that...well not so happy with), but he left for personal reasons. My new rheumy seems competant but I am not sure yet.
Have you thought about discussig your concerns with your PCP? You make very valid points and I cannot stress enough how important it is to have a good communication going with your doctor. If you have that with your PCP and he/she is willing, then as long as test results are shared with the other doctors then that seems like a possible option. Of course, for health insurance purposes as well as malpractice insurance (for the doctor) I an mot sure if you have to follow a certain protocol. Good Luck. You know yourself best = stay strong and speak up!
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Bactrim, Zantac.
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 8/10/2010 10:29 AM (GMT -7)   
It seems to me that you are already being watched for your existing kidney and liver issues. There really aren't any specific tests that "prove" lupus, nor are there any specific treatments for organs that would be different than what you are already receiving.

The only "treatments for lupus" are systemic (whole body) and are either disease-inhibiting (plaquenil) or disease controlling (prednisone, pain treatment, etc) - if there are organ issues they are treated pretty much the same as if the organ issues were caused by something else.

Lupus is diagnosed by having 4 of the 11 symptoms described here.

While I do recommend seeing a rhuemy, I have to ask if there isn't one in the area that can see you more often? I've had lupus for 8+ years, and it's been very controlled and mild the last 2 years, and I still have to check w/doctor every 3 months. Just seeing someone every 6 months is totally inadequate treatment, esp when you are new to the rheumy.

Best of luck,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Minnie2017
New Member


Date Joined Aug 2010
Total Posts : 11
   Posted 8/17/2010 6:43 PM (GMT -7)   
I agree with Lynwood! I am new to my lupus disease, and since my rheumy dx me with lupus, I've been seeing him every 4-6 weeks since he put me on plaquenil and prednisone. I like him so much; I ask as many questions as needed and he wants to keep my disease under control. There are no specific tests, only tests that rule out other autoimmune diseases and that's what my rheumy did. Also, if you are working, get with your HR dept and obtain FMLA paperwork for your doctor and you to complete - this way it's on file in case you are ever gone from work for an extended period of time. It protects you! I would try and obtain a new rhuemy as well.
Peggy

pennstate71
Regular Member


Date Joined Mar 2010
Total Posts : 90
   Posted 8/24/2010 8:27 PM (GMT -7)   
Thanks everyone with your responses...I had to get a bunch of previous lab work to my rheumy and am to call her tomorrow about how the plaquenil is going. Unfortunately in the meantime I have had some lung problems and problems with the lining of my ribs. Then today out of nowhere I just got hit with the motherload - I'm used to full body flares from fibro - to the point I cant lay, or sit or have even my hair touch my body...intense pain...but its like every joint in my body got hit with a hammer...both sides top to bottom - killing me to type right now. Then it feels like even my bones...especially my legs from him to foot are just shooting pain it's really deep....I never had this with my fibro and I've been pretty sick and fatigued on and off I'm just so used to being sick I figure I'll get over it but tonight's the first night I'm really scared because it's so horrible. I am calling the rheumy tomorrow to tell her all of this along with the plaquenil - especially because my pcp is on vacation...I've never had all of this at once all over my body before...I just hope I took enough benedryl and my nighttime antidepressant to make me sleep and pray itll be better tomorrow...I don't even know if this is normal...but at least maybe it'll be a wake up call to her too if I come to her and not always just my pcp? I sure hope so because it's pretty scary at this point...hopefully I get a quick response...
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