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I don't know if I have lupus yet but what a useful site!!

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Posted 9/15/2018 1:55 PM (GMT 0)
WOW. I have been treated for the past three years with a lot of meds for connective tissue disorder and psoriatic arthritis. I have been posting recently on the chronic pain site because I do have chronic pain and I had questions with an upcoming (last month) 4 level ACDF surgery. I am having a flare-up as I recover and found a new primary care Dr who referred me to a new Rheum. So, I have scrolled around and trying to educate myself on what I need to get looked at for lupus with full preparedness...You people are amazing. What a lot of information!! And kindness. Taking it all in, thank you!

Post Edited (Darla) : 9/15/2018 8:21:53 AM (GMT-6)

Posted 9/15/2018 3:30 PM (GMT 0)
Welcome! Good luck at your upcoming appointment. I hope you get the answers you need and that you start feeling better soon.

Best wishes,
Breanna
Posted 9/15/2018 4:27 PM (GMT 0)
Hello, Breanna and thank you! I am trying to absorb all (or some!!) of the information but I definitely feel the warm vibes and it is so appreciated. I was told at my rheum visit 3 yrs ago I had an abnormal titer indicative of scleroderma but I guess I also showed signs of PsA. I have had treatment for PsA (Enbril, Humira, now Cosentyx as well as MTX injections weekly) and Plaquenil, Celebrex...and I am not better. I am sicker and weaker and now my bloodwork shows anemia so I am headed to a new Rheum who might add something to my care. Thanks for listening!
Posted 10/3/2018 10:39 AM (GMT 0)
Hello lovely people, I have an appt today with a new Rheum as my regular one just plods along cycling from one med or dose to the next without a clear direction or diagnosis. I am guardedly optimistic with the new appt today. Thanks to the Lupus 101 info I know to go in without make-up etc. which I would have done to try and look my best at meeting new people. They will just get me! Thanks. I will check in after the appt.
Posted 10/3/2018 3:01 PM (GMT 0)
Hopefully your new rheumy will share what s/he is thinking as the diagnosis progresses. I do want to warn you, though.... these are tricky diseases that present in a number of different ways, and there is no clear way to (ie no absolute blood test or the like) diagnose, so sometimes trial-n-error is about all they have to go on.

If you watch carefully, maybe you can see the Dr investigating all the things on the 11 diagnosing criteria. Keep us posted!
Posted 10/3/2018 4:39 PM (GMT 0)
I had an EXCELLENT visit with my new rheum! Wonderful. As good as I could have hoped. I brought a list of my meds and a brief bullet point sheet (thank you!) with a little history & symptoms. She reviewed my materials and did a very intense, focused interview and physical exam. I did see her check the 11 diagnosing criteria! She explained everything she did with the physical exam and was very eager to get my medical records of things like the x-ray of my knees prior to the replacements (to see the bone), etc.

She has ordered extensive testing and I go back in a few weeks for the next step. Her working diagnosis is an overlap of things...likely uctd or mctd. I have symptoms of lupus including the butterfly rash as she pointed out but I have not tested positive for that in the past (ANA). She reduced some meds due to the damage to the heart they can cause and is having me tested to check my heart and lungs again.

Really wonderful. I know all of you know the relief at finding a Dr that 'gets it' and knows their stuff as I believe she does. Thank you for your concern! Really. I needed that support...still do. This relief wears off when I realize I have a rotten disorder/disease.
Posted 10/3/2018 4:44 PM (GMT 0)
My hand is really swollen and my brain full from the exam so some of what I said might not be clear but I wanted to check in and thank you for your concern and support! Just adding on to my previous post I think what the Dr is saying is an 'overlap' syndrome so more testing is needed but the symptoms and physical exam look that way.

Post Edited (Darla) : 10/3/2018 10:49:03 AM (GMT-6)

Posted 10/3/2018 8:36 PM (GMT 0)
Glad the visit went well!!

These are the kinds of diseases that are sometimes best treated even without a specific diagnosis, as the diagnosing criteria is all symptom-based and the symptoms tend to be mix-and-match. Often it becomes a trial-and-error exercise to see how your specific manifestation of autoimmune disease reacts to different treatment options.

But it does sound like you have found someone willing to look at the big picture. My best Dr ever was fond of saying, "We can make you feel better than this!"
Posted 10/3/2018 8:45 PM (GMT 0)
So true. She decreased a couple of things that are possibly adding to the inflammation if it's lupus. I asked if labs don't show anything then what? She said the symptoms are positive and described specifics. Thanks for your feedback!
Posted 10/4/2018 12:17 PM (GMT 0)
Lynnwood, I cannot thank you (and Sherrine) enough for the hearty welcome and kindness and support as well as the great information. The visit was much less stressful because of the information I learned from you and the materials on this site. I am just on the edge of being devastated. I am holding it together because I have to for my family and my own mental health, and because I already really knew what I was dealing with. Hopefully I will get some improvement with good medical care. Can't hurt!

I am encouraged that you have been dealing with lupus for so long and are coping so well. If you don't mind my asking...do you have any suggestions for managing/coping? Anybody else have any?
Posted 10/4/2018 7:10 PM (GMT 0)
Four key components that are good suggestions for anyone -

Eat as healthy as possible. Clean proteins, vegetables, and fruits. Keep carbs to whole grains and avoid processed foods. If having a lot of inflammation, read about foods that cause inflammation and avoid them. Drink lots of water and no much other stuff.

Get deep, restorative sleep. Even if you are exhausted and sleeping 18 hours a day, it might not be what you need. I was sleeping that much when my rheumy suggested a sleep aid (Trazodone) - I thought he'd gone mad. Turns out by using it I sleep 10 hours and feel refreshed.

Get regular exercise. Maybe it's just a walk to the mailbox or down the street, try to move and get your blood flowing. Simple isometric exercises in your chair. Do whatever you can. Try to increase it every couple of weeks, but only by 10%.

Manage stress. Don't schedule 3 things a day, stick to one. If I get groceries today I won't do laundry; Dr's appointment tomorrow, then home for a nap. When flaring, maybe even one thing every two or three days makes more sense. If doing well, maybe two things a day but I rarely manage 3 without needing "zero" days afterwards. If I take a "vacation", I have to remember to give myself an equal number of zero days when I get home!!!

Then -

Take meds as directed. If you aren't feeling better, give them time to work, but don't hesitate to ask if there are alternatives.

If you are working, think about taking disability. You will know when it's time. Also ask your Dr if it's time to take it - it won't happen if your Dr isn't ready to sign off on it.

Listen to your body!
Posted 10/4/2018 7:25 PM (GMT 0)
Thank you so very much. I appreciate the time and effort you have given me more than you might know. And the kindness and support. In some ways I am overwhelmed at what I am dealing with but I also know how I have been feeling and it is almost a relief to have others know this is not in my control.

Your advice is good! My life is complicated...whose isn't, lol? Briefly, I have an easy life in that I work from home and have a wonderful, retired husband. But I also have a wonderful but dependent 25 yr old son with severe autism. I am his caretaker. He goes to a day program but I help him in the shower, etc. I barely can take care of myself and skip showering some days but I make sure he is happy. He is a source of joy but it is so hard to rally. I will skip the rest of the long story for now but even the work from home is rough because I teach online and the demands of that are exhausting...it is 24/7 and typing is really hard many times.

I don't mean to whine. Sleeping has been really a problem. I take ambien and have for yrs but maybe I can switch it.

Thanks so much. I am going to definitely incorporate some of the suggestions and eventually, I hope, all of them. Hope you are having a good day!

--Oh, I ordered a product for dry mouth today...I am having no interest in eating because I am not able to taste food due to dry mouth with Sjogren's. I forgot the name right now but are you aware of anything helpful for dry eyes/mouth? Thanks.
Posted 10/4/2018 8:03 PM (GMT 0)
I too have Sjogrens - try the Biotene products for dry mouth and Tears Naturalle II for dry eyes. Biotene has mouthwash, gum, and some other things, too.

Any eye lubricant will help -- nothing with medication in it, must be med-free and say lubricant. There are some eye gels as well as eye drops. The gels are more for right before bed. With serious cases sometimes people get eye plugs - plugs up where the eyes drain so the tears are forced to remain in the eyes.

Can you shift a few of the day-to-day activities with your son over to your husband now that he is retired?
Posted 10/5/2018 9:55 AM (GMT 0)
Thank you for the tips I will definitely try. I did try an eye drop with med in it and wow it made things worse...but i have one that is a lubricant and it does seem to help. I was not addressing the dry mouth until the rheum did. I have not been able to taste or smell things except for brief moments for a few months. I think the dryness is a big reason so I am trying to do what I can to address it. And, of course, it is not pleasant.

My husband and I have just been married 5 yrs, and he is wonderful but at 64 with very arthritic ankles he is not a great candidate. It would be more stressful for all of us. I did just find out that the services that allow my son to be in a day program have people available to come help out with things like that. When I need it I can start the process to get that approved. The help will be good but the reality of people marching in and out of our home all the time is a bummer. I am almost 59 and all of a sudden I see that I am not young anymore. I honestly felt awful physically but mentally young and sharp and all of a sudden things have shifted.

Thanks for the spoon theory article. I am familiar with that. It is very true!

Thanks again, Lynnwood. It is great advice.

Post Edited (Darla) : 10/5/2018 3:58:53 AM (GMT-6)

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