Just diagnosed

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deevee67
New Member


Date Joined Jun 2007
Total Posts : 13
   Posted 6/27/2007 11:49 AM (GMT -7)   
I just found this message board and I'm so glad I did. I was just told by my doctor yesterday, that I do in fact have Lupus. My regular doc did a ANA on me and it came back positive. So from there he sent me to a Rehumatolgist (SP). I have seen him twice already and yesterday he put me on Plaquenil. I am new to all of this, so if anyone would please help me out here, it would be greatly appreciated. I have read up on this med. but I have also been told about some negative things about it. PLEASE HELP!!!
Dolly confused

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 6/27/2007 2:41 PM (GMT -7)   
Hi Dolly and welcome. I'm sorry to hear that you were diagnosed with lupus, but at least now that you know, you can start treatment and hopefully start to feel better. I'm not sure how much reading you have done, but in my signature there are some great clickable resources to look at where you will find information that is hopefully helpful to you. Did your rheumy tell you that plaquenil can sometimes take several months (sometimes longer) to build up in your system enough before you start to feel the effects of it? So, don't get frustrated if you don't notice any changes for a while. The only problem I had with plaquenil is that it caused stomach upset for the first few weeks I took it, but those side effects eventually went away. Make sure to take it with food.

This is a great forum and we give each other a lot of support, which is often needed when dealing with lupus. Please feel free to ask any questions you have. I remember feeling very overwhelmed when I first got sick and doctors mentioned lupus, so it's nice to have a place like this where you can talk to real people who are going through similar things.

I'm glad you joined us and I look forward to hearing more from you.

Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 6/28/2007 4:25 AM (GMT -7)   
Hi Dolly, Welcome to the greatest forum on the internet! There are so many wonderful people here. I know this Lupus DX has to blow your mind. I remeber thinking of all things why this? I mean I couldn't even begin to figure out what was going on. Half the time I still don't get it but with the help of others here I muddle thru some how. Re: the plaq. did your rheumy tell you that you need to see an opthamologist. While is is rare there have been cases of vision problems from plaq. It took a long time 6 months before I noticed anything with the plaq. Now it seems to be helping. It's kind of like you don't really notice what vitamins are doing until you stop taking them. If you understand that.
anyway again
welcome
I'm looking forward to getting to know you.
carol
God Bless
Carol
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax.5mg
 
When things are really dark look up. You can see the stars.
 
 
 


deevee67
New Member


Date Joined Jun 2007
Total Posts : 13
   Posted 6/28/2007 7:36 AM (GMT -7)   
Thank you so much ladies. And, yes, mt doc did tell me about the eye exam. i will go in December, he said 6 months from the time I start the Plaq. It was such a shock to me hearing this the other day. I mean, I am only 39 (soon to be 40 in Sept.) and I have Diabeties, High Blood Pressure, High Cholesterol, all kinds of GI problems, and now this. I start taking the Meds. today. I just got it filled last night. I just hope and pray I have no bad side effects from it. Thank you so much for being so wonderful here. I hope to get to know you guys really well. I'm sure I will have lots more questions.
And again.......THANK YOU!!!
Always wake up smelling the sunshine


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 6/28/2007 8:23 AM (GMT -7)   
Dolly, I hope everything goes well for you with starting the plaquenil. Don't get too discouraged if it upsets your stomach at first. Most people go through this for a few weeks and then it gets better. I imagine hearing the news about having lupus was pretty hard. I'm sorry that you now have to deal with this in addition to the other health problems you have. I'm 40 right now and first got sick with lupus symptoms when I was 37 and I was a very active person before getting sick. It's sad that lupus does not care how old you are and it usually hits women during their child bearing years or the years that should be the prime of your life. It is a hard thing to adjust to and deal with, but all the support here has made it a lot easier. It's nice to know I can come here and know that I am among people who completely understand all of the struggles and all of the ups and downs of having this disease.

Take care and I'm glad you are with us.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1551
   Posted 6/28/2007 9:42 AM (GMT -7)   
Hi Dolly.  Welcome to our forum.  The lupus diagnosis is hard to take, but the positive thing is you're now getting treatment.  I've been on plaquenil about two years.  I never had problems with side effects, but it took about 6 months before I began to feel better.  Before my lupus symptoms started, I was healthy, exercised, and very active.  During the two years I sought a diagnosis I developed high blood pressure, diabetes, major depressive disorder, high cholesterol, asthma, obstructive sleep apnea and IBS.  So I was taking meds for all this and then got my lupus diagnosis.  I'll be 50 in Sept.  Try to be patient re the plaquenil.  I'm sure you'll have lots of other questions soon.  I have found everyone on our forum to be understanding and supportive friends.  I look forward to hearing from you!      

Dx: SLE diagnosed in 2005, major depressive disorder, diabetes, fibromyalgia, asthma, gerd, sleep apnea, hypertension, IBS
Tx: plaquenil, methotrexate, Imuran, prednisone 10mg, flexeril, prozac, lamectil, celebrex, lisinopril, actos, lipitor, nexeum, seroquel, advair, arthritis tylenol  PRN: ambien, neurontin, promethazine, xanax, albuterol
supplements: multi vitamin, C, flaxseed oil, calcium/D
             Better living through chemistry :D    Donna
 


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 6/28/2007 3:34 PM (GMT -7)   
Hi Dolly:

Just another welcome to the forum coming your way. I'm sorry that you've been DX'D with this disease. It can be very overwhelming in the beginning. This is a great place to come for information. Try to remember we all react differently to our lupus and the medications.

I'm glad to hear that your Rheumy is up on top of things and has started treatment for you. I sincerely hope that the Plaq brings you relief real soon. I've been taking plaq since June of 2001 and didn't have any real side effects from it. It basically went real smooth when I started it.

Again, welcome to our forum and I'm looking forward to getting to know you better.

Take care,

Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, MDS (Blood Cancer). Mediport and tons of meds.


CaptSue
Regular Member


Date Joined Jan 2007
Total Posts : 279
   Posted 6/28/2007 4:34 PM (GMT -7)   
Dolly,

You've come to a great place. Everyone here knows what you have been through and many can help with specific question about meds. etc. It is all so sad that we need to struggle with this (or similar) diseases but it is ohhh so fortunate that we have such friends.

Good Luck and
Stay Strong,
Sue
Diagnosis: Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena (both diagnosed in 2006)

Meds: prednisone (5.0 mg wish I could taper), Imuran (2X50mg), Prilosec (20mg), Paxil (10 mg, replaces Prozac), AmbeingCR (12.5mg)


emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 6/28/2007 8:48 PM (GMT -7)   
Hello Dolly, well hello Dolly....

I'm sorry I hope my goofy sense of humor didn't put you off. I didn't finish the rest of the song Louie Armstrong used to sing because while it's nice to have you here, it certainly somewhere you want to be!!! If nothing else I dated myself by using those song lyrics. I'm 52; there are probably lots of you guys out there going what is she talking about. Research it! :-)

Anyway, I'm sorry you have been diagnosed with lupus, but you did a good thing in finding your way to our little corner of the lupie world here at Healing Well. Take care and hope to see you here often.

xoxo emmie
</FONT>

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy


petuniablue
Regular Member


Date Joined Jun 2007
Total Posts : 64
   Posted 6/28/2007 10:51 PM (GMT -7)   
Hello Dolly,

You have found a wonderful forum with a terrific group of people full of love and support. I have only been with the forum for a short while and already I love them all they are so supportive and they are full of great information. I have not been diagnosed yet I have my 1st rheumy appt July 26 so I am in the dark for a while I have diabetic neuropathy and I have a lot of pain I am learning to deal with it and I am learning to take care of myself.

So welcome Dolly and I hope you find all the love and support you need to deal with your new diagnosis...


God Bless you

Sheryl
Bi-polar Depressive, PTSD, SAD, Sleep Apnea ,Diabtes, Diabetic Neuropathy, possible Lupus or something


Meds:

Tegretal 200mg ( 4 tabs a day ), Wellbutrin XL 300mg, Clonazepam 2.5mg, Lyrica 50mg ( 2 3 times a day), Byetta 10mcg 2 injections daily, Simvastin 20mg, Metformin 1000mg( 2 times a day) Tramadol 50mg ( 2-3 every 6 hours for pain) Hydrocodone/Apap 5mg /325 mg( 1 every 6 hours )


peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 6/29/2007 5:52 AM (GMT -7)   
Hi Dolly, welcome to the forum. This is a great site. I got lots of good info and support here. Good peeps here!
 
I've been sick for 12 yrs but was only diagnosed with Lupus this past April. I tool the plaq for two months and had to stop b/c of the terrible side effects it gave me. But everyone is different and tolerates Plaq in different ways. It did not work for me so I will have to find an alternative. All you can do it try it and see if it works.
Keep us posted to your prgression. Like I said, the folks here are totally super
 
Jen

smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 6/29/2007 6:06 AM (GMT -7)   
Hi Dolly. I remember how scared and confused I was when I was diagnosed with Lupus in September last year. My Rheumie put me on plaquenell and I have had no problem with it. Somedays I feel better then others and think that the meds have kicked in and then other days I feel rotten and wonder if the meds are ever gonna work. I think it just takes time and patience and lots of understanding and support, which you get lots of that here.
 
I am sure you will get lots of answers to all of your questions here. Its nice meeting you and hopefully you will get some much deserved relief.
 
Connie
 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.

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