Why not join us?
Smart Patients is an online community where patients and their families learn from each other.
Already a member? Sign in here.
I have tried coconut oil, but the Argan Oil works better for me. The vanishing oil from, priveproducts.com, is light and moisturizing. It is rather expensive, but it takes very little and lasts a long time. Thank you!
The Brits have published a comprehensive guide on health issues faced by myeloma patients and how to manage them. As far as I recall, it is the best such guide I have seen.
I enjoy hearing from all people who are affected by this malady. We all need to be listened to.
I'd like everybody to feel free to write whatever they want, any way they can, and I'll make sure to sort this flow of written text out and to find nuggets of good, practical, applicable to my situation information.
There is an Early Sjogren's blood test that identifies "novel autoantibodies" which show antibodies before Ro or La would show.
How long did it take your stomachs to wake up and start functioning as an esophagus? Any advice you can give?
My goal is not to make the right decision, it is make reasonable decisions. That has kept me alive for over 9 years with Stage IV RCC.
I have participated in two Phase I clinical drug trials and will, hopefully, start my third Phase I trial soon.
I have lost about 50% of my hair since diagnosis. There is nothing I have found to help. I would also love any ideas.
hair loss hasn't been a problem and I am thankful for my Brazil nuts.
This brings home to each of us that we're all individuals, but it also allows us to add to our own repertoire of stories with perspectives from others.
It was great making a contribution to science, it was even better having my cancer knocked back a couple of pegs in the process.
My personal opinion is that phase II trials can be a real sweet spot for cancer patients.
Participation in the trial meant I had to deal with some major side effects, but it also resulted in a 43% shrinkage of my cancer, and it bought me 8 valuable months of time
I know this is to be expected, but it still is quite the sticker shock to open that mail and face the number.
Would like to know about people with cancer in two kidneys. Thanks very much for your answers.
I didn't realize thinning hair was a symptom of SjS until my hair got thicker after using Imuran for a few months!
ISC - intermittent self-catherization - is really no big deal once you get over the 'ick' factor. But I understand it is a lot more difficult for men with all their plumbing twists and turns than for women who have a straight shot.
I know that a person can live a full life with this disease.
If you are able to take care of a dog in your life you have all the possibilities to achieve some true moments of unselfish love.
I take comfort in us all holding hands and walking against the wind together, stronger.
I have Sjogrens, my sister has RA, my brother has psoriatic arthritis - tell me there is not a genetic link!
All they got in medical school was 5 minutes telling them Sjogren's is ONLY DRY EYES & DRY MOUTH. We all know it is so much more!
You also have the option of don't show me this again. If you think a topic is annoying or unnecessary, use this option.
Never seen an unnecessary post.
And do remember that there are new people coming in all the time, who may need support that feels elementary when you've been at this a while.
I find it useful when MM patients describe their particular side effects of various MM drugs and how they deal with these side effects.
Even if you feel you are at square one, do not give up. Just do what you can when you can.
I think our different view of Phase I clinical trials comes from our being in different cancer treatment worlds. You are in the "cytotoxic" world and I am in the "targeted therapy/immunotherapy" world.
Don't you wish Sjogren's had a calendar?
The bigger point is to not worry about future possible clinical trials. Just focus on the treatment your husband needs today and to enjoy this day.
if he can't get into a Phase III trial you want, you may find a Phase I or Phase II trial you think is worthwhile.
Start with your regular stylist or most hospitals have a selection in their gift boutiques.
Where do people get good wigs for this problem?
Hats and wigs are a life saver. I wish there were affordable UV protective scarves.
My rheumy told me not only is it the Plaquenil that is causing it, but the disease itself.
I will ask my Rheumatologist about Selenium. Thank You!
Reading these posts from all of you on so many aspects of this condition has helped me tremendously.
I'm so glad you have found this a good place to be.
I totally agree with you that this is a great place for support and information.
My husband and I went to the Sjogren's Conference in 2013 and 2015. I was able to bring home good information and passed it on to my doctors.
Many hip-replacement patients can do a lot by themselves if they have the right equipment and training.
Rituximab for Myasthenia Gravis?? Please reply with your experience.
I still am careful not to overdo, but so nice to get a little bit of me back.
The Sjögren’s Syndrome Foundation is hosting their Annual National Patient Conference on March 31-April 1 in Cherry Hill, New Jersey.
So far, the best thing I have found to deal with fatigue is naps.
Hospice is good at helping people come to grips with death, and they usually have different types of people to talk with besides the nurse and nurse's aides who visit.
these decisions are up to the patient, but the patient deserves to know all options available
Good Heavens, you guys are great for my brain!
it is truly a marvelous feeling when a pet picks you out as their person.
view a slideshow of quotes
Click on a tag in the wordcloud below to find quotes from other topics.
Join the conversation
Request an invitation to join Smart Patients.
Already a member? Sign in here.
© 2017 Smart Patients, Inc., all rights reserved.
are licensed under the Creative Commons license.