Just found out and kinda freakin, anyone :)

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jelynn22
New Member


Date Joined Aug 2009
Total Posts : 5
   Posted 8/21/2009 4:33 PM (GMT -7)   
Hi,
I am a newbie and I just found out I have lupus. I am so overwhelmed, there is so much info and I feel so crazy inside. How do I know what is meds and what is lupus? Every few days I feel horrible. I grew up with a parent of severe RA, who is now deceased, so I am well acquainted with auto immune issues. I really don't even know what to say, where to begin. If anybody has words to share please do. The medicines plaquenil and prednisone, any thoughts? Thanks.

gonuts
Regular Member


Date Joined Jan 2008
Total Posts : 159
   Posted 8/21/2009 7:48 PM (GMT -7)   
cry Just letting you know you are not out there alone, I too have been diagnosed as having Fibromyalgia with RA and symptoms of Lupus. I therefor most likely will end up with a postive eventually. So hang in there. wink

Plaquinil was great till i had an allergic reaction to it.!! Just have to keep trying others. But she said i have to find something to stop the progression. I guess i'm back at square on again. rolleyes

Take care. Laura wink
Cervical spine surgery 2004, C-section 1986, Cholecystectomy 1999, Thoracic and Lumbar injury 2000. Anxiety/depression 2008. Fibromyalgia 2009, Thyroidectomy 2008. Degenerative disc disease. IBS. Asthma, Rheumitoid Arthritis, Sacroillitis, Scolylosis, disc bulge in L5/S1. Meds: Lisinophil, xoponex, symbocort, pulmocort, troponal, vitamin 2000 D, Vitamin B complex, Hydrocodone, Tylonal Arthritis, Cymbalta.


cookie monster1
Regular Member


Date Joined Aug 2009
Total Posts : 41
   Posted 8/21/2009 7:59 PM (GMT -7)   
welcome jelynn22, I am so sorry to hear about your diagnosis.  my hubby is on lyrica right now....he has not been diagnosed yet tho, going to see a 3rd rhuemy next month sad ..he has been taking it for about a week and it seems to be helping with some of his pain....he might also be starting the plaquenil but not sure yet. I do know his older brother has been taking both of them for a while and he says they have helped alot and he feels better than he has in years.
What kind of symptoms are you having?  How do you like your rhuemy?  something I would recommend is to get a copy of your dr file(s) so you always have it handy just incase you need it.
Hopefully the plaq will help to control it for you.
Best to you and keep me posted
cookiemoster1

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 8/22/2009 6:39 AM (GMT -7)   
jelynn22,

Getting a diagnosis of lupus can be very overwhelming. Have you read "The Lupus Book: A Guide for Patients and Their Families" by Daniel J Wallace? You can get it on Amazon for less than $20 and it's very comprehensive. Even though you are well acquainted with AI diseases this might answer a lot of questions you have.

I too struggle with the question of whether certain symptoms are caused by lupus or the meds. Prednisone is a miracle drug and a nightmare at the same time. I am currently suffering from my third stress fracture in 6 years, have had molars break in half, have had the awful weight gain, etc. etc. But it helped put me in remission. Trust me, we all know just how frustrating this disease is and you've come to the right place to get understanding and support.

Tell us more about yourself, and feel free to vent, scream and whine. We all do from time to time and it helps to get it off your chest with people who understand what you're going through. I hate to hear of another lupus diagnosis and it seems that this week we've had several new diagnoses pop in here.

I'm glad you found us.

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 8/22/2009 10:32 AM (GMT -7)   
Just wanted to say i'm sorry you are in "the club", but we do welcome you. As Patty said you will find alot of wonderful friends and support here. I've been on prednisone for 10 years, it truly is a love/hate relationship! What dose are you on? I've been on Plaquenil for about 4 or 5 years. I also take Cellcept for my lupus. It may take a little while for your doc to tweak your meds and find the right combination and doses. So, keep a journal of your symptoms. Also, keep in mind, it takes a while for Plaquenil to 'get in your system'. Prednisone, usually (in my case) has a pretty immediate effect! I wish you the very best. Hang around, you'll learn alot and i'm sure contribute alot!
God Bless You, Judy

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 8/22/2009 4:32 PM (GMT -7)   
Hi and welcome.

You are among others who truly understand the fear and anxiety of first finding out
you have an autoimmine disease. I have linear scleroderma, but my rheumy
believes I have an overlap of lupus and RA. I also have fibromyalgia and post on
their forum.

Learning to cope with the illness is a gradual process. Keeping stress down is important,
and so is pacing yourself. It is easy to become fatigued, so you will have to learn your
limits. Don't be afraid to ask for help when you need it.

I was on plaquenil for nine months. I never had any bad side effects. My rheumy took
me off to put me on methotrexate an immunosuppressant. I have not been on prednisone
for a few years. I have osteoporosis, prednisone is not good for me.

I went through a grieving period when I first found out about my illness. I think that
is natural for just about everyone. Positive attitude goes a long way in helping
you deal with this.

I am glad you have found us

Robin


 
 possible MCTD, Raynauds, Fibromyalgia, Osteoporosis, Degenerative
 Disc Disease, Osteoarthritis, High Blood Pressure, Migranes and
 Pseudothrombocytopenia, biopsy shows a Scleroderma variant
 MEDS: Methotrexate, Savella, Boniva,Lisinopril, Folic Acid, Flexeril, and
 Vitamin Supplements


jelynn22
New Member


Date Joined Aug 2009
Total Posts : 5
   Posted 8/24/2009 5:32 PM (GMT -7)   
Thank you all for your great words and wisdom. Well I had an allergic reaction to the plaquenil and now have been taken off of it till thursday to try something new. i went to my rhuemy today and she was not happy that the plauenil did not work for me. So now I have to wait and see what's next. So far the prednisone is working, 30 mg right now. My body is so itchy I am going crazy. PLEASE STOP!!!! I am going to buy that book that was recommended to me. Right now I feel that I need to learn as much as possible. My doc told me today that she also thinks I have a touch of RA, gosh there is so much to figure out. I have to say that I am noticing I get tired more often and that is having an effect at work, don't like that at all. Well time to get back to mommy duties. Thanks again to all that replied.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 8/24/2009 5:35 PM (GMT -7)   
As I seem to recall Plaquenil comes in both a generic and a brand name form...I too am allergic to one but the other is fine. You might try a switch before discarding it totally
Lynnwood, Lupus & Sjogren's Moderator
Life is far too important to be taken seriously. - Oscar Wilde, 1882

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