newly diagnosed and confused

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hootyhu
New Member


Date Joined Nov 2010
Total Posts : 18
   Posted 11/16/2010 8:10 PM (GMT -6)   
Hi All,
   I guess I need to give some background here so here it goes:
 
I have been having intermittant pain in my hands, wrists, and sometimes ankles for about 3 years, I finally decided to get checked out, afterall, I couldn't have slept wrong all that much:) I do have a family history of RA, Lupus, colitis and Chron's....yay me!!!!
 
After my primary care looked at me like I am crazy he did lab work and WOW! was my labs not normal, so off to a rheumatologist I go. Initally he thought it was palandromic Rheumatism but after more labs and a few weeks later I get Diagnosed with Lupus and Sjogren's.
 
I am a little confused....I have no symptoms of dry eye or dry mouth. I work in opthamology and I have seen a lot of Sjogren's patients....can I have it with no symptoms???  I know that lupus can be tricky as far as you can (or you may not) have a lot of symptoms and it can change....
 
my Rheumy suggested plaquinil .....should I start on that even though my symptoms are very sporatic?  He also says that I can be on it and be pregnant (my husband and I are talking about having another baby) but everything I read says that you can't.
 
I guess I am looking for some guidence on where to get more info and just support. I am in the process of getting a second opinion. I think with something like this anyone should get a second opinion.
 
Can anyone think of other questions or points to bring up to the 2nd doc?
 
Thanks in advance for reading this, I am still trying to process it all.
Gretchen:)

hootyhu
New Member


Date Joined Nov 2010
Total Posts : 18
   Posted 11/16/2010 9:33 PM (GMT -6)   
I wanted to add something.....sorry brain fog.... I know that nobody can tell me anything about taking or not taking plaq. but I am looking for an outlet and ideas to get me through this journey. Any and all comments and info would really be appreciated-Gretchen
DX 11/2010 Lupus and Sjogren's

tent63
New Member


Date Joined Nov 2010
Total Posts : 9
   Posted 11/17/2010 1:26 AM (GMT -6)   
I too was diagnosed with Lupus in 2003 and  secondary Sjogrens 5 years later.  I was surprised about the Sjogrens also as I did not have dry eyes/mouth at that time(I do now)...only a big toe that burned at the base.  Rheum looked at me like I was nuts and "well ok...I'll run some tests".. Then it was "wow. you Do have inflamation."  No kidding, hence the burning digit.  Anyway, I just figured that I had the markers for it but not necessarily the common symptoms.  There are many other symptoms of Sjogrens...those I seem to have - joint pain, headaches,vertigo...the symptoms overlap with Lupus and I certainly dont know which is which.  The most distressing is the fatigue.
 
Here is what I wanted to impart to you...I have been on hydroxychloroquine(plaquinil) since 2003 ( the diagnosis of Lupus.)  I have been exhausted - I mean sleeping 12 hours a night and then 3 or 4 more during the day, still remaining really really tired.  I recently spoke to a friend diag with Lupus who said that she tried the hydroxychloroquine(Plaquinel) and that it made her tired.  Desperate for energy, I have weaned myself off of it and I have alot more energy.  I also have alot more joint pain so it appears that I traded one for the other.  I dont know if it is a common side effect of Plaquinil but it certainly affected my energy in a negative way.  Look up the AARP list of drugs and side effects for plaquinil...that site had alot of info that I had not seen elsewhere.
 
Let me know what you find out with the second opinion.  I am sorry that you are having to  deal with this.  It is hard...I continuously hear " You dont LOOK sick."  But the thing is, we know our bodies and when they are not functioning right.
 

J.P.
Regular Member


Date Joined Oct 2010
Total Posts : 86
   Posted 11/17/2010 1:31 AM (GMT -6)   
Hi hootyhu, my pain sounds similar to yours- wrists, fingers, ankles, and sometimes everywhere else. I also came here looking for support. I don't have any experience with plaquinil but I hope you are able to get some advice. I see what you mean with the sporadic symptoms and taking medication, I've wondered the same thing. I'm on here almost everyday so if you need someone to vent to I would like to hear more of your story.

J.P.

hootyhu
New Member


Date Joined Nov 2010
Total Posts : 18
   Posted 11/17/2010 3:40 PM (GMT -6)   
Thank you guys so much! I was in so much pain and yuckyness yesterday that I called my doc. he called in a pred pack and OMG! I could probably do a backflip today! no pain no soreness!!!! I am completly amazed! I will keep everyone updated on my second opinion and all.....thank you so very much! Im not crazy:)
DX 11/2010 Lupus and Sjogren's

ChynasMom
New Member


Date Joined Nov 2010
Total Posts : 2
   Posted 11/19/2010 8:59 PM (GMT -6)   
Hootyhu, I have been on plaquenil since 2000 and I have never experienced tiredness.  I think your body will show you what is best for you.  I was diagnosed with Sjogren's but no eye problems until about a year ago.  Now full blown sjogren's (I had to have a silicone plug in my tearducts).  I had the pain in the hands and ankles, fingers, etc.  You will continue to have that but plaquenil does help.  I also use vitamin supplements and find that they really really help.  I take omega 3, co-Q10, multivitamins, lutein.  Don't expect an instant feel-better feeling, but you will notice a difference in about 4 weeks.  Also, because it's lupus, you are never going to be the same...symptoms come and go, some are very debilitating, some not so much.  So healthy attitude about your body and family support will get you through the hard times.  I think a visit to another rheumatologist will help you decide whose bedside manner you like best.  I started with a rheumatologist who told me:  lupus is painful.  Get used to it.  If you take your medicine, you will feel better.  If you don't, you will die.  Didn't like that guy much!  Then I went to another one who showed not only more concern, but she told me about alternative ways to cope.  She can be tough at times, but she really cares.  If you have a good relationship with your rheumatologist, it will go a long way toward helping you feel better!

hootyhu
New Member


Date Joined Nov 2010
Total Posts : 18
   Posted 11/19/2010 10:52 PM (GMT -6)   
ChynasMom,
Thanks about the Rheumy advice. I liked my first one (current one I guess) he really gets it. I just wanted a second opinion mainly on the treatment options. I was suprised about the Sjogren's I work with eyeballs everyday and I see patients with Sjogren's I just never knew there were other symptoms. well, anyway, I am making cookies for my daughter's Thanksgiving party on Monday, I feel good on the pred so I might as well make the most of it:) Have a great night All.
DX 11/2010 Lupus and Sjogren's

sonyalee
Regular Member


Date Joined Sep 2010
Total Posts : 51
   Posted 11/21/2010 11:59 PM (GMT -6)   
I also have sjogrens and when i was diagnosed with lupus they checked for the sjogrens and i definatley have it but have had no symptoms up to this point. I have been on plaquinel for about 4 yrs now. I have had no tiredness with it either. I do know with taking plaquinel you have to make sure you have your eyes checked regularly, that's very important with it, but as far as side effects it has been very good for me and has given me no problems. Hope all gets better for you soon, and that you get the answers your looking for.
SLE, Discoid lupus, acute cutaneous, acute vasculitis and sjogrens

Prednisone, ultram, mobic, cellcept, plaquinel and ambien.
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