Newly Diagnosed Senior Citizen

I'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??

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.

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! 

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!

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.

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!

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.

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.

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

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....