So, I traveled from PA to Texas for work. Before when traveling, I would be so exhausted and need almost a full day of rest before attending any functions. Not this trip! No sireee...My energy and focus is so much improved over last year. It has to be the full year and 3 months on plaquenil. I've attending workshops, evening activities, etc. No mind you. I don't stay out late like most do as I do need to keep my sleep pattern in place...but to enjoy dinner and one glass of wine...nice.
I have been gluten free for almost two weeks now too. That's a hard adjustment at a conference. They do offer a special meal and I take it. It isn't bad. Good selection. But...oh, how I missed that wonderful cheesecake they plopped down in front of everyone's plate at lunch today. *sigh* I resisted though.
Sjogren's not the end of life. Find a way to treat the symptoms and a way to enjoy the little things. Don't fear it.
LisaMarie
That's wonderful news. I agree about the plaquenil. It's been a Godsend for me.
Enjoy the conference.
Kathyx
That is wonderful. I am so happy to hear that. ;D ;D ;D CK
That is so great! Always good to hear the good stories to keep the spirits and hope up! I too have had good results from plaqenil and feel like a new person compared to what I was before :) Hoping now that I feel better I can start slowly upping the anti without too much trouble. Thanks for the reminder to let go of fear and enjoy!
YEAY!!! Plaquenil, methotrexate, and a careful (gluten, dairy, and soy-free) diet have helped me ENORMOUSLY.
Sometimes it takes a long while to get diagnosed, and then even longer to find the right meds and lifestyle adjustments to make you feel better, but it IS possible!!!
Great to hear it!!!! keep up the good work!
Gursie
It was very uplifting for me to log on to the forum this morning and read all of the positive comments about Plaquenil. My rheumatologist is starting me on the med Friday.
I have heard that it takes approx. 4-6 months for it to begin taking affect. I am praying that this drug works for me, as I am hoping to become an active participant in life again.
Thanks for both boosting my mood and giving me hope!
Isn't it amazing when you realize that something is finally helping you!
A little less pain here; a little less pain there; a little more energy; and it suddenly dawns on you that things are looking up.
So glad you are getting relief. I too, am enjoying some relief.
Yea Plaquenil ;D
SjoDry
I just got back from my trip. Travels home yesterday were long due to delays at Wash.Dulles. I ended up sleeping for 9 hours! But, I think I would have done that without sjogren's after a long day of travels. I feel great. Energized that I did this trip and had no issues. I was able to attend all sessions of the conference and meals without having to go up to my room and take a nap. No insomnia or fatigue. I managed to eat right and really watched the alcohol intake. I did have some but it just caused dry mouth so I was fine with one maybe two glasses socially.
I can tell you from my experiences with this journey: Be patience. Especially those that are not have the severe issues with Sjogren's. I feared traveling for work. To the point that I was turning away opportunities. Let the medicine have its time to work. Right now, I take neurontin and plaquenil and a sleep aid. I still have some tingling but not much. But the fatigue and the brain fog is lifting. Those are huge for me. Give it time to work.
Glad travel was good and you are home safe. Glad you are feeling well too. Hearing good news makes me feel optimistic, thanks. :) :)
I am waiting on my next plan of action from my doctors and I am hoping for better days :D CK
Great news....Can we say the "R" word?
Definition of REMISSION
: a state or period during which the symptoms of a disease are abated
How encouraging!
LisaMarie, I applaud you for sticking to the dietary changes. It is easier to swallow a pill than to give up foods you love.
I have definitely slowed down my evening activities, but have far fewer sick days than before plaquenil. Then when I added the dietary modifications --no wheat, very limited dairy-- the dryness decreased.
Confession: I have been trying some sheep cheeses. Eaten occasionally, I tolerate them much better than cow or goat.
Whey cheeses, parmesan, pecorino Romano, etc. actually help digestion because they have butyric acid.
Great news, Lisa Marie.
Question though.....do you ever "stop" taking medications because you feel so great? I'm thinking no. Why chance it? If things are working for me why change? I feel so good. I feel like my old self right now. Functioning in almost every aspect. I'm not sure if it is because I've been gluten free for three weeks, the plaquenil/neurontin, or a combination. Maybe I'm just in recession? I've had 3 hours of sleep last night and I'm still at work functioning well. Before, my dear husband could never wake me up. I would have slept until noon.
I am sure we all think about it. It is that thing again.... Feeling like we are normal. LOL I would say don't mess up a good thing.
I recently got to quit some meds ;D but only because they stopped working. I hate taking pills. I hate not being my old self but I think I will do just about anything to be "me" again.
I am thrilled for you and how well you are doing so I think keep up the regimen. Maybe have that discussion with your doctor after you have been stable ,ie relapse free for a long time and get his thoughts?
Have a great week. CK
The doctors had me try going off meds. It didn't work and it takes up to a year to get back to where you were. At least for my eyes. Don't chance it. Fatigue was faster and harder.