lupus and older persons

over 60 yo and have lupus with very varied symptoms?
0
vein problems? - 0.0%
1
kidney problems? - 100.0%
0
thyroid problems? - 0.0%
0
anemia problems? - 0.0%
0
flares produce sores that can get infected? - 0.0%
0
nosebleeds, probs clotting, etc? - 0.0%

 
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captaint
New Member


Date Joined Aug 2015
Total Posts : 10
   Posted 8/28/2015 11:04 PM (GMT -6)   
have lupus now for at least 10 yrs. along with RA. am experiencing more and newer symptoms. anyone over 60 yo ?

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1342
   Posted 8/29/2015 12:20 PM (GMT -6)   
I was in my mid 60s when first diagnosed with lupus. My case was very severe in the beginning and lupus attacked all my joints, kidneys, blood (low platelets mainly), entire GI tract, and hit me cognitively. I also had polymyositis as part of MCTD and that almost killed me and I was quadriplegic with a feeding tube for a while. My docs treated me with IVIG which saved my life and prednisone and Imuran kept me in remission for 8 years (still am for PM) until lupus started to give me skin problems and attacked my liver and blood (again). My platelet numbers have gone back up a little after being treated with steroids for several months and at present I am not on anything but get regular labs.

Are you being treated with any controlling meds? What are your new symptoms?

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

captaint
New Member


Date Joined Aug 2015
Total Posts : 10
   Posted 8/29/2015 4:54 PM (GMT -6)   
i was misdiagnosed for several years. i had a severe flare. that 's how i started. right now i take doe-pin hcl, plaquenil, nefedipine, percoset and a lot of taking care of myself. am hypothroid, anemic, depressed and lupus. it staggers me sometime that i am as good as i am. have RA with all this. And i am going back to school(at my age) med. lab. tech. my hands are full and so is my heart. just got treated for AADD. it has helped some. the thyroid and anemia keep me feeling fatigued. i just do the best i can and have to believe that i am doing right.

captaint
New Member


Date Joined Aug 2015
Total Posts : 10
   Posted 9/10/2015 11:47 AM (GMT -6)   
have just gone thru a severe flare. blisters formed on palm of hand and has become infected. red lines are going up my arm toward my heart, fever, terrible fatigue and body ache. has kicked off my RA also. fingers and toes are cramped heavily. i think the sun may have set it off.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 9/10/2015 12:21 PM (GMT -6)   
With red lines of infection, you have already seen a Dr, right? If not, please do so AS SOON AS POSSIBLE!!

Hope you get to feeling better soon.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

captaint
New Member


Date Joined Aug 2015
Total Posts : 10
   Posted 9/10/2015 4:05 PM (GMT -6)   
Thanks,
just got back from the dr. the infection was from nerve cells at base of shaft of hair. it hurts like shingles. anyway, got antibiotic and am waiting for it to work. the extreme fatigue, low testosterone, low thyroid and anemia. a buffet of symptoms. i love it, ere it breaks me! i hate the "fog" the most.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 9/10/2015 6:16 PM (GMT -6)   
Captaint,

Are you on any treatments for your Lupus? Any other meds? Sometimes the fog can be alleviated a bit by prednisone, and sometimes they can do a sleep study and find that although you are sleeping and resting all the time you aren't getting "deep restorative sleep" which can really affect the brain function. Also they will want to make sure you are not low in B-12.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

captaint
New Member


Date Joined Aug 2015
Total Posts : 10
   Posted 9/10/2015 6:40 PM (GMT -6)   
prednisone is a staple in my life. nefedipine for raynaud's, plaquinine and doxe-pin hcl. a trycyclic antibiotic. the fog is anemia, hypothyroidism(i think this is the major) and very low testosterine. probably stress fatigue is part also. i just finished taking care of my mom and dad for 11 yrs. very little time off and then had both to die. then family is squabbling over remains of their life. it has been unreal. time, rest, diet and exercise with a good dollop of grace from God , i will survive. not low in b-12 or folic acid. i take supplements, eat about 4 times a day, bicycle since i have a replacement hip. am doing all i can, i think, but the fatigue is depressing. hard to fight. do you have lupus?

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 9/10/2015 7:02 PM (GMT -6)   
Yes, I've had Lupus since 2002. Fog was so bad for a while that it turned into measurable cognitive dysfunction resulting in disability. Fortunately my Lupus responded well to Cellcept and I am much much better now.

I think you are right -- care taking and family squabbles can really cause major stress of a kind that really accentuates brain fog. I'm having some stress dealing with changes in my father's health, and it's messing with my head!!

Hang in there!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

captaint
New Member


Date Joined Aug 2015
Total Posts : 10
   Posted 10/17/2015 8:37 AM (GMT -6)   
a new wrinkle. have stage 2 kidney probs. uremia. eight of 10 fingers are bleeding from fingerprints. started cell cept 4 weeks ago, so this is a prob. since i am in school, this "new". malaise and fatigue bumped up to extreme fatigue. my gpr @ school went down to 3.0. being 69y/o, the trend cannot continue. May have to change Dr. this one FIGHTS me every step of way. After being with him for 8 yrs. i really hate the change, but... BTW am studying hematology. i think he thinks i know more than he does. I do! especially on blood disorders. Having lupus , able to have time to research it, have ddevoted much time to it. very frustrated and tired.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 10/17/2015 8:40 AM (GMT -6)   
Yikes! That sounds pretty serious. Or at the very least scary to be bleeding like that.

Hope you can get everything under control soon.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Amethyst4
New Member


Date Joined Oct 2015
Total Posts : 6
   Posted 10/17/2015 10:38 AM (GMT -6)   
@captaint, kudos to you for pressing on & going to school in spite of all your health & family issues!

I'm wondering about your misdiagnosis. I'm over 60 & was just dx'd with lupus after GI issues & debilitating fatigue for 6 mos. Since I've been on Imuran for over 6 years (for another autoimmune condition) the thinking is that the lupus symptoms were being masked by the Imuran. Now, after being on Plaq for 6 weeks I'm feeling better than I have in years. I'm wondering if issues I was attributing to the 1st autoimmune has been lupus all along...or even if the 1st condition was a misdiagnosis. Appt with a specialist this week to help sort this out, but I'm wondering what you received as a misdiagnosis?

Post Edited (Amethyst4) : 10/20/2015 10:40:19 AM (GMT-6)


captaint
New Member


Date Joined Aug 2015
Total Posts : 10
   Posted 10/17/2015 2:07 PM (GMT -6)   
imuran probably helped you, it is useful in several diseases. my doc has me on a tetracyclic antibiotic also with plaquenil. can hold down bacterial bugs. take nefedipine for raynaud's and circulation difficulities.. make sure your doc checks you periodicall for kidney prob. anemia is a really big thing, since lupus can affect hemoglobin, veins, thyroid. these three things can make you feel very fatigued. linked with low "t", and depression. a bagful of tired feelings. just got back from ER and it appears hemolysis has acceleerated somewhat. this is a premature death of cell membranes, and iron is not getting to hemoglbin. i have some long range planning and research to do. this is one of the reasons i am going to school. nobody takes better care of me and knows me better than myself. DO NOT BE AFRAID TO ASK DOCS QUESTIONS. YOU MAY NOT FIND OUT UNLESS YOU ASK. I appreciate all feedback and love. will reciprocate in kind. btw, this fatigue is such that when i read, iusually do not comprehend what i just read. tough for being in school!

Amethyst4
New Member


Date Joined Oct 2015
Total Posts : 6
   Posted 10/17/2015 5:40 PM (GMT -6)   
Most valuable lesson I've learned in recent years is that no one is a better advocate for your healthcare than yourself! Good for you that you are looking to learn so you can manage your care wisely. Must admit I'm in the learning stages myself and not really thrilled about some things I'm reading. First book I bought was The Lupus Encyclopedia and in some places it's just too much (scary) info! I'm just beginning to feel a little more normal, so right now I'm managing on a need-to-know basis. :-)

Post Edited (Amethyst4) : 10/20/2015 10:40:34 AM (GMT-6)


captaint
New Member


Date Joined Aug 2015
Total Posts : 10
   Posted 10/17/2015 8:54 PM (GMT -6)   
the lupus book is good. i wrote a term paper on it and my cites mostly were interesting. only one was techy. i just learned some of my probs are hormones. thyroid(have hasimoto's) parathyroi,pituitary adrenal and hypothalmus. there is an acth test that helps you dtermine what is out of balance. (please excuse text, my fingers and brain are not supportive. there is so much to know. hang in there, the lupus book is good for a very good basic outline of lupus. Learn the attitude "ain't NOTHING that me and my Lord can't handle." i will ask lynwood if i can email my paper to him andmaybe he can give it to you.

captaint
New Member


Date Joined Aug 2015
Total Posts : 10
   Posted 10/17/2015 8:57 PM (GMT -6)   
The Lupus Book is the name.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 10/17/2015 9:16 PM (GMT -6)   
"The Lupus Book", by Dr Daniel Wallace, is a very well-respected and readable text on Lupus. I advise anyone who can get their hands on a copy to read it!

If you want to email each other, put your email in your profile - only HW members can see it, and it isn't searchable by "bots", so you won't get spam or anything. Do NOT put your email in a post.

Thanks
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Amethyst4
New Member


Date Joined Oct 2015
Total Posts : 6
   Posted 10/18/2015 1:52 AM (GMT -6)   
Thank you Lynnwood & captaint...The Lupus Book by Wallace was actually the 2nd book I bought on Lupus! LOL! Must admit I breezed through it and don't recall a lot so I'll get back to it tomorrow on your recommendations. Was not doing so well when I read it before. I was tested for thyroid, had the ATCH Stim test and a gazillion others while hospitalized along with CTs & MRIs...everything came out fine til the rheumy tests. ANA, Anti Smith & dsDNA were all elevated.

I'm particularly curious about the dsDNA and so far haven't gotten a straight answer. I'm wondering how my value of 700 would be considered. Is it slightly high, very high or somewhere in between? And, is it a reliable indicator of Lupus activity?

captaint...would be very interested to read your paper. I enabled email in my profile...just allow me a day or two to read it please.

Post Edited (Amethyst4) : 10/20/2015 10:40:47 AM (GMT-6)


captaint
New Member


Date Joined Aug 2015
Total Posts : 10
   Posted 10/18/2015 10:15 AM (GMT -6)   
dsdna is a test to try to distinguish the kind of autoimmune response you have. ana is the indicator you need to verify lupus. dsdna can indicate drug-induced lupus or not which is a nice thing to know. this most likely can be reversed. DO NOT OBSESS OVER RANGES. all ranges are somewhat arbitrary. some more than others. each person has thier own "normal". now don't let me generalize too much. you do have to have an indicator to let others know whats going on. A good doc will take your history and condition into account. btw, dr. daniel wallace has some other books that are good and more detailed. YOU DO HAVE TO MAKE THE DOC ONE OF YOUR BEST FRIENDS. a support system is.... no words. i am from a very small town. My family doctor(available) is not versed in auto immune.(typing with bleeding fingers) i have to take care of myself. my rheumy is an hour and a half away. AND he is very popular. ihave to prepare well to see him.use your resources. make sure family and friends understand what is going on. use them wisely. all this is in the book. don't push yourself too hard, let the disease tell you what and when to do. if you resist it makes it harder to recover. God and faith make make a difference.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 10/18/2015 10:25 AM (GMT -6)   
A positive ANA does NOT "verify Lupus". This is a common mistake that is even made by a number of doctors.

A positive ANA is one of 11 indicators that you may have Lupus or another auto-immune disease, and means you should check out the other indicators. Lupus is diagnosed by having 4 or more of 11 indicators.

You can have Lupus without a positive ANA, and you can have a positive ANA without Lupus.

A rheumy is the correct doctor to diagnose auto-immune diseases.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde
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