Newly Diagnosed Senior Citizen

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lupusnewbie
Regular Member


Date Joined Aug 2011
Total Posts : 52
   Posted 8/15/2011 8:15 PM (GMT -6)   
idea  'm 67...active tennis player...started to feel tired...three months later my doctor tells me I have SLE.  I told the doctor I'm too old for this....crashes, flares, pain, sick all the time.  What happened to my life?? 

LupusMomma
Regular Member


Date Joined Aug 2011
Total Posts : 74
   Posted 8/16/2011 7:18 AM (GMT -6)   
Sorry to hear about your diagnosis but glad that you found us. Getting told that you have SLE was a shocker I am sure. And there will be a lot of changes that you have to make just to feel okay for the day. It is good that you are in shape and active though. turn Anyway, I hope that the doctor gets you on the right track and you start to feel a little better soon.

lupusnewbie
Regular Member


Date Joined Aug 2011
Total Posts : 52
   Posted 8/16/2011 8:14 AM (GMT -6)   
Yes it WAS a shocker! I remember hearing my Mom talk about my Dad having Lupus, but I never pad muh attention to it as I didn;t even know that Lupus was. For three months, I was a human pin cushion, with blood work every other day. I find the hardest part making people understand what the term "crash" means. I keep telling them they DON'T understand. The depression is very bad. I feel I'm too old to have his disease. With age comes other issues, and the Lupus just exacerbates everything else. I also am hypothyroid, which is under control with meds, and when I started feeling the fatigue, I thought I needed my thyroid meds increased. My PCP ordered basic blood work...and thus, the journey to Lupus began. Thank you for caring. I feel the research is limited because Lupus is not terminal....at least ffor most. I won't take any meds other than Aleve. My Mom had glaucoma and macular and lost her sight at the end of her life. I've seen people on steroids....and my Mom was crippled with osteo. So the present meds are not for me.

Lynnwood
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Date Joined May 2005
Total Posts : 7720
   Posted 8/16/2011 9:38 AM (GMT -6)   
You might want to reconsider medication - you can carefully choose which you want to use, and check with us as to what has had the most positive impact.

After suffering from the extreme fatgiue and crashes like you describe for 2-3 years, I was eventually diagnosed with Lupus. Other symptoms became more prevalent, particularly cognitive dysfunction - was almost finished with a PhD, owned & operated a medium-sized high-tech business -- lost it all when I lost my brain. Now it's 7-8 years later, and I am only on plaquenil, and my mind & energy are back to normal -- or even better than normal for the energy part. This would not have been possible without medication & treatment.

We all feel "What happened to my life"...I know I did when Lupus arrived when I was 42, and I've lost almost 10 years to it. But I am happy to have 'recovered' and am looking forward to the rest of my life!!

You might want to read www.butyoudontlooksick.com/wpress/wp-content/uploads/2010/02/BYDLS-TheSpoonTheory.pdf -- it is a great way to understand the "crashes" you refer to and helps describe the situation to friends.

Hang in there,
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

lupusnewbie
Regular Member


Date Joined Aug 2011
Total Posts : 52
   Posted 8/16/2011 12:21 PM (GMT -6)   
Thanks again for your response. Yes I did read Spoon Theory and probably anything and everything about Lupus.  Unfortunately, I try very hard to explain to people how I am feeling, but I can look at them and know they don't have a clue. Once, in my tennis game, I may have said something about feeling a crash coming on, and my "opponent," who was also our team captain, said "You're always sick!"  I never forgot that..and that's how I feel PEOPLE feel. I know my own HUSBAND has trouble understanding. Whenever I tell him I am hurting, he always has something that hurts HIM.  How do I make him understand it is NOT the same!!   People dont want to hear about it.  They can't see it.  They can't feel it. I'm trim and attractive and I dont look sick.  THAT is the BAD part!
Friends have walked away because they don't want to be around someone who is "sick' a lot.  I think that's the most difficult part of this whole disease.  You HAVE it and WISH it showed!  I don't have a rash and I am not sun sensitive---but I hurt, I crash, I am tired,  and feel sick most of the time.  I know..I am lucky that I "had a life" before this came on.  Nonetheless, it does not make it any easier.  My Dad died at my age, in 1981. He had Lupus which attacked his kidneys and heart.  I already told my son...I dont want any extreme measures if it ever comes to that point.  I am not enjoying my life anymore.  Everything changed..including me. 
 
Can you tell me what side effects the Plaquinel have had?  I am deathly afraid of losing my sight.  I've read postings about people that say they have lost their sight.  I'm scared...and it shows! 

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/16/2011 4:36 PM (GMT -6)   
I've been on plaquenil for three months now and I feel so much better. My pains are less and for the most part I have energy except when I over-do things. I just can't seem to adjust to doing less.
I've had no side effect from it so far.
Joy

lupusnewbie
Regular Member


Date Joined Aug 2011
Total Posts : 52
   Posted 8/16/2011 4:45 PM (GMT -6)   
Joy:
Do you mind if I ask your age? I did read that Plaqinel kills your appetite and can cause anorexia. I weigh about 116 now and want to keep the weight. I'm about five foot four. I am fearful of losing more. I used to weigh around 124 before SLE. May I also ask what your dosage is??? Does it help the bone pain as well as the crashes??? Thanks!

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/16/2011 5:17 PM (GMT -6)   
I'm 43 and I kind of wish it would affect my appetite I need to lose 100 pounds. :)
Joy

Ellie27
Regular Member


Date Joined Oct 2008
Total Posts : 119
   Posted 8/16/2011 6:44 PM (GMT -6)   
LupusNewbie:

3 years ago when I was diagnosed with Lupus I didn't want to go on the medication either. I had already suffered through the side effects of my anti seizure medication and didn't want any more meds. I also was freaked about the possible eye damage. My rheumatologists advice to me was to not take it if I wasn't ready, but he was sure that I would be fairly soon. I left with the prescription for Plaquenil and 3 months later I couldn't stand the way I was feeling. It had gotten worse. After a lot of prayer and thought I decided to give it a whirl. I am so glad that I did. A few years later my eyes are still fine and I have a specialist who checks my eyes once a year. I was also told that with the eye exams they can catch any possible vision damage happening early enough to prevent it from having a large effect. I encourage you to think it over and be reassured that many of us on this site have had to take that medication and are the more grateful for it. I had to go through the exact same thing when I was told that I would need immunosuppressants last year. Freaked me out too. I have been on them for over a year and again am super grateful for the change it's made to my life and the quality of life that I got back which I had lost. At one point I was unable to work and barely able to have the energy to maintain my chores at home. The medication actually allowed me to go back to work full time and do my chores:)

I have no doubt that you will find your way. I remember having people encourage me when I was first starting out on this ever so scary health battle and just know that you're not alone. I wish you all the best.
Dx: Diagnosed with Epilepsy Jan 2005, SLE July 2007, since then, Raynauds, Alopetia Areta, Vasculitis, discoid lesions, Endemetriosis March 2008. Meds: Tegretol, Imuran, Plaquenil, quite often Flurbiprofen and Rabeprezole.
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lupusnewbie
Regular Member


Date Joined Aug 2011
Total Posts : 52
   Posted 8/16/2011 7:03 PM (GMT -6)   
Dear Ellie,
I am older than most people in this group....my rheumatologist told me it was "rare" to be diagnosed with Lupus at my age. My eyes have been bothering me a lot without Plaquinel...they hurt sometimes and my vision gets blurry. I use over the counter eye drops that help somewhat...but not much. That's why I am so fearful of taking the Plaquinel...that..and my Mom's issues with Glaucoma and Macular that took her eyesight eventually. If there are other seniors in this group who have been recently diagnosed...PLEASE contact me. I will be 68 in September. People my age have a lot of health issues...Lupus NOT being one of them!!!!!!
Up until I joined this group..I felt like a freak. The "new me" wasnt me. I felt like my brain was implanted in another body! I've been flaring every day...all day. The only "peace" I have is when I sleep, and if I can get through a night without waking up at 3AM, I am grateful.
Ellie--did the Plaquinel make you gain weight??? Or lose weight? I refused the Prednisone for many reasons...weight gain being one of them. Every med has side effects...did you have ANY from Plaquinel??? I am really fearful of this drug...and am grateful for your support and everyone else in this group. If I sound like I'm whining...I apologize. I'm just new at this and trying hard to overcome the depression and deal with the "new me."

Sarah

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 8/16/2011 8:13 PM (GMT -6)   
While your eyes should be checked by a ophthalmologist at least once a year while taking plaquenil, changes in eyesight are very rare. I have been on this site daily over 6 years, and have yet to find someone who has had damage. And, if you check every year as suggested, your doctor will find damage asap, you will stop taking plaquenil, and your eyesight will return to normal.

Reference material from the Plaquenil website says: "Rare but potentially serious eye toxicity can occur. This toxicity affects a part of the eye called the retina and can lead to color blindness and even loss of vision. An ophthalmologist (eye specialist) often can detect changes in the retina that suggest toxicity before serious damage occurs. Therefore, regular eye examinations, even when there are no symptoms, are mandatory."

I worried about it too when it was first suggested to me, but all the rheumies (3) and all the doctors in my 30+ eye clinic (15+ drs) had never seen problems in any of their patients, so I was reassured and when ahead without any issues.

Todays treatments are MUCH better than those in 1981!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 8/16/2011 8:21 PM (GMT -6)   
PS. I have not had ANY side effects from Plaquenil, although I found that the generic is not an option for me. (Small red spots all over my body!)

Prednisone does change your metabolism a bit, and your body may physically crave carbs. I believe that as long as we are forewarned of that, we can keep our consumption down and avoid a lot of the "weight gain" issues -- I found it took some of my appetite away, so then to eat at all I would find myself eating bad things, with the logic that "bad food is better than no food at all".

I was a marathon runner when lupus struck, at about 130 lbs (appropriate to my height & bone structure)... my "bad food rather than no food" added about 40 lbs -- but I would rather have the 40 lbs than loose my cognitive functions, which seems to have been the option for me!!! I am now totally off of prednisone, and the weight is slowly coming off.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Ellie27
Regular Member


Date Joined Oct 2008
Total Posts : 119
   Posted 8/16/2011 9:38 PM (GMT -6)   
Lupus Newbie,

I have never noticed any side effects from Plaquenil. The only thing that I did notice was feeling better and that's the truth. There was no weight gain from it for me either. I sure noticed side effects from the other few meds that I am on, but definitely not Plaquenil. Before I took it I was experiencing A LOT of joint pain, extreme fatigue and a boat load of other things. Those slowly disappeared after a few months of taking the drug. I hope that helps.
It is God that gives me the strength to carry on in the valleys of life and the wings to fly to the mountain tops

Dx: Diagnosed with Epilepsy Jan 2005, SLE July 2007, since then, Raynauds, Alopetia Areta, Vasculitis, discoid lesions, Endemetriosis March 2008. Meds: Tegretol, Imuran, Plaquenil, quite often Flurbiprofen and Rabeprezole.

lupusnewbie
Regular Member


Date Joined Aug 2011
Total Posts : 52
   Posted 8/17/2011 7:00 AM (GMT -6)   
Ellie,
You are quite a lady! I wish I had half your strength and faith. Last night a new symptom...vertigo. Did that ever happen to you too? I will seriously think about taking the Plaquinel and trust your advice.
I am sorry that you are dealing with this disease at such a young age. I guess in retrospect, I am lucky to have gotten this far, disease free. I have two beautiful grand daughters, 7 months and 2 and a half, who will be visiting us in Florida next week. They keep me going. I hope God gives ME the strength to keep up with them. This will be their first visit since my diagnoss and sickness. I fear for their future as well, as their Mom is Asian and they are at high risk for Lupus as well. Bless you.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/17/2011 6:25 PM (GMT -6)   
I sometimes wake up with vertigo for about two minutes.
I have a constant "screeeeeee" in my ears. Sometimes louder and sometimes softer, but always there.
Joy

lupusnewbie
Regular Member


Date Joined Aug 2011
Total Posts : 52
   Posted 8/17/2011 6:46 PM (GMT -6)   
I had it off and on all day yesterday and going to bed was an eperience. I had to wait for the room to stop moving to try and fall asleep! Did anyone try Benlysta yet?? I spoke to my hematologist about it a few months ago and he said he didn't know enough about it Please let me know if you've tried it.....thanks!!!

lupusnewbie
Regular Member


Date Joined Aug 2011
Total Posts : 52
   Posted 8/17/2011 6:57 PM (GMT -6)   
Dear Lynwood,
Sorry I missed your Post last night.  You are probably a lot younger than I am, and I can totally understand what effect Lupus has had on your life. I love tennis and I am good at it...bt now I struggle to get out of bed and push to get dressed and onto the court.  Once I start to play, I start feeling better...but it's that "jump start" I lack.  I had a weight problem before I was diagnosed with hypothyroid and it took a year for me to get my meds regulated and my weight down.  That's why I won't even consider Prednisone. 
Doctors all say STRESS is the "instigator" for all diseases.  I was a caregiver for my Mom for many years, and spent the last year of her life, with her, in a nursing home, for 12 hours a day, 7 days a week.  My PCP attributed my thyroid quitting on me, to stress.  The Lupus, I am thinking, MAY have been set off by a flu shot I had last year..they "added" the H1N1 to the shot (which I found out AFTER I took it), and I was sick for about 2 or 3 days after the shot.  The Lupus came on about two months later.  I am wondering if they gave me live virus and awakened the tiger!!!!   Best to you, Lynwood!
Sarah

Loopyinaz
New Member


Date Joined Aug 2011
Total Posts : 9
   Posted 8/18/2011 11:15 PM (GMT -6)   
I'm 62 and have been trying to figure out since December what is wrong with me. Like I tell the Docs, I'm used to no energy because of Fibromyalgia but this is different! More later I've crashed and trying to remember my name. Azluppy I think.....

Loopyinaz
New Member


Date Joined Aug 2011
Total Posts : 9
   Posted 8/18/2011 11:17 PM (GMT -6)   
Ahhhhhhh LoopyinAz. LOL OK I will start my story when my brain comes back. Was going to be tested last week but by the time I had my appointment I had a big sore on my forehead. Shingles. As if I needed that....
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