Do I need a new rheumy too??

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 4/6/2010 9:04 AM (GMT -7)   
So Ive been reading other ppls posts & I am wondering if I need a new rheumy as well. I see a general rheumy at Johns Hopkins Hospital in Baltimore Maryland and I live on the eastern shore(3 hrs away)about 30 minutes from Salisbury. First off,my rheumy is generalized..although her specific interests are in Scleroderma. Secondly, I see her & she is still in fellowship so shes still learning the ropes. I see a neuro as well there. All they want to do is treat pain(naprosyn,neurontin,etc) & my seizures(carbatrol b4 now keppra.) & plaquenil. they wont consider me lupus even though i have 5-6 of the 11 criteria. They say I have "UCTD w/features of SLE." I am still having symptoms & am che.mically allergic to sunscreen so it makes it hard to be outside at all. I get rashes within in 10 mins from fluorescents,sun & even thru windows. I am now pregnant & things r a lil better I think because of the increased cortisol... Thoughts/comments?...new theumy?
*Lupie Britt*- Epilepsy Dx: 2003 & SLE Dx: 2009-Expecting Baby # 2! :)-Current Meds:Plaquenil-200mg 2x/day, Keppra-500mg 2x/day, Prenatal Vitamin- 1 pill/day, Folic Acid- 1mg 1x/day
 *Due September 25th 2010*


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 4/6/2010 12:04 PM (GMT -7)   
Hey Britt. You need to see a rhuemy that listens to you and gives you advice on how to manage your symptoms. If you are not happy, then YES, i would deffianty find another rhuemy. My first rhuemy was treating my lupus but was not listening to my sympoms. He barly spent anytime with me and I usually left his office more confused than when i went in. So I got a referal from my PCP doctor to another rhuemy and i love her to death. she is very concerned about my pain and everything that the lupus causes. I am usually in a room with her for 30-45 mintues and I see her once a month. Maybe before you completly switched rhuemys, you could get a 2nd opinion and see what you think about the rhuemy that gave you your 2nd opinion. That way if something happens, you will have a rhuemy you can get in quickly to see especially since you are pregnant!!! When do you find out if its a boy or girl? When are you due?

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 4/6/2010 12:32 PM (GMT -7)   
You say "UCTD w/features of SLE. I am still having symptoms"...

The diagnosis isn't the most important thing, but you should be getting treatment for your symptoms. Plaquenil, pain, and seizure treatment is important, sun/florescent light isn't really treatable except by avoidance....but if you have other symptoms they also need to be addressed.

Are you having inflammation? Swollen, red, and hot anywhere? Mine moves around, feet, ankles, wrist, appendix area, you name it. If so, that should be treated.

And, since you are pregnant, I'd suggest seeing a high-risk gyn...auto-immune disease can flare quickly after delivery because of all the strain put in the body, plus some of your meds may not be pregnancy-friendly.

Do you need a new rheumy? - that's up to you, I didn't read of anything specifically "wrong" in your treatment...that said, it never hurts to get a second opinion if you are unsure.

Be well!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 4/6/2010 4:33 PM (GMT -7)   
Amy I will find out what Im having monday April 12th. I am due Sept. 25th. I had a seizure in jan out of the blue after 7 yrs of being seizure free. Grand mal. They have never known whats caused my seizures but cant evaluate until after the baby is born,minus an eeg im due to get April 12th as well.
*Lupie Britt*- Epilepsy Dx: 2003 & SLE Dx: 2009-Expecting Baby # 2! :)-Current Meds:Plaquenil-200mg 2x/day, Keppra-500mg 2x/day, Prenatal Vitamin- 1 pill/day, Folic Acid- 1mg 1x/day
 *Due September 25th 2010*

New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, December 06, 2016 9:15 AM (GMT -7)
There are a total of 2,733,490 posts in 301,128 threads.
View Active Threads


Who's Online
This forum has 151264 registered members. Please welcome our newest member, bvail.
339 Guest(s), 18 Registered Member(s) are currently online.  Details
john16, schoolpsych, NiceGuyEddie, Bobby88, NewspaperLover, Starlight*, Tickled6, Sherrine, Tudpock18, Faustmann, Jay79, DennisinNY, maria2016, ks1905, Traveler, kcsmith72, kodaska, straydog


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer