Good morning everyone. I’ll try to keep this succinct. I’ve been seeing the same rheumatologist for over a decade and I continue to decline. I live in NY and have sought second opinions in the past, going as far as paying out of pocket for some fancy Park Avenue doctor. Anyway, a friend of a friend who is a doctor recommended I go to Brigham and Women’s Hospital in Boston. I sought out a doctor with wonderful credentials and had my appointment yesterday. She, in fact, agrees with my rheumatologist that I have SLE, fibromyalgia, Sjögren’s Syndrome, and some other autoimmune-related issues. But she thinks something else is going on that has yet to be diagnosed. Ugh! She wants to run more blood tests and see if she can get to the bottom of it. In the meantime, she wants me to taper off the 80+ mg of prednisone I take daily and cut back on the Motrin for pain. I don’t know how I will manage. I will follow through with this doctor, but I’m afraid. I can’t imagine having yet another issue to worry about. How will I get my 2nd grader ready for school in the morning if I can hardly move? I also care for my 93-year old grandfather who lives with me. I don’t know what to do. I feel I’m doing all I can but not catching a break. Thank you for reading my post. Any encouraging words are welcome.
I bet its ur thyroid…once you get answers you will heal…get ur teeth checked…you are strong…you will be better soon…you will be able to do what you need…I’ve been here…no worries. …we are listening…don’t worry about money…tell them to bill you…destress…one thing at a time…keep talking…breathe…keep us posted…you are strong…
Good for you to seek out a new doctor and not just accept the treatment you were getting from your old rheumie. I'll keep praying for you to get the answers and to be able to heal.
Kim,
You are doing a great job researching and finding the correct Dr.'s to help you! You will need a Team of professionals who know how your SLE is affecting you and how to manage it. High doses of prednisone are now used only for flares. The lowest possible dose through tapering, over a long period is what the Dr.'s are preferring at this time. Everyone is different and every SLE patient has a different treatment plan, so please follow your specific treatment. Once you are dx. with one AI disease it is important to find out if you have others so you get the proper care.
I lived in Northern NJ for many years and had a nursing career for 19 years, just 3 months short of being eligible for my Pension! SLE attacked my colon and I had to have a resection. In the recovery room I began to bleed. TG I knew the Doc.'s and everyone pulled me out of the bleed. That was in 1992.
I am 61 now, trying to manage my illnesses as a single parent. I do have a adult child who lives with me due to her challenges and I oversee her care 24/7. My Mom is 87 and lives close by. She still drives to the grocery store twice a week and her health has remained good. So I have an idea of what your life is like.
We live in the Midwest now and I miss NJ, NYC, etc. I have had to adjust and I do have great medical teams for both myself and my daughter. She has RA along with everything else. Large, teaching hospitals are the best place to find cutting edge care. NYC has many active chapters of LFA support groups. The members/ patients will be one of your best resources and opportunities for life long friendships, support, knowledge, etc.
You will transition through to a comfortable life, between the support here and in the LFA chapters, and advocating for yourself.
Rest, is important on a daily basis even if you only take a short time for yourself.
I have found new hobbies I enjoy, and volunteer when I can with families entering the Special Ed. maze.
The prednisone has helped me but also caused degenerative disk disease in my back. I cannot have surgery due to the AI bleeding issue.
My pain is managed by an implanted spinal cord stimulator.
As I look back I remember my Primary Care Dr. testing me for SLE when I was 21. My hands & knees would swell and I was running low grade fevers. But it wasn’t until 1992 SLE really became apparent. The support groups have been my best teachers.
Sorry this is so long!
I will keep you in my thoughts.
Have a good weekend.
Donna
Thank you, everyone, for the support. I’m not giving up. I’m going to keep fighting. It just becomes tiring and overwhelming as you all well know. I like this new doctor. I pray this possible new underlying issue is an easily curable one. I sure hope it doesn’t complicate matters. I’ve tried Chinese medicine, alternative/homeopathic remedies and integrative medicine with varying degrees of success. I’ve been on a paleo diet, a raw diet, anti-inflammatory diet, and I’ve been a vegetarian and a vegan, again with varying degrees of success. Sometimes I may drop a few pounds, other times I may feel a temporary relief of symptoms, but nothing lasts long term. I’m frustrated. I’m motivated to change. I’m determined to change. I just don’t know what to change anymore. I hope this new doctor can guide me.
On the subject of thyroid disease, I was diagnosed with hypothyroidism. I keep having blood tests and they keep increasing my dose of Synthroid. I’m up to 275mcg. Oy! I hope to have my thyroid regulated sooner than later.
I’m beginning to decrease my prednisone and Motrin today. Wish me luck. I’ll also keep all of you in my prayers!
Thank you!
PS Donna, your post was not too long. I feel for you and I feel encouraged by you. I’m never discouraged by long posts. The more I learn about all of you, the more comforted I am that I’m in a community of like-minded, compassionate people.
Thanks, Ann. I’ve read your posts in the past and have always appreciated your input. I find the information you share is always valuable. Thank you.
I forgot to mention that the new doctor suggested the possibility of putting me on methotrexate. I read the side effects and they scared me. I’ve tried Cellcept, Benlysta, and others that have all made me sick. Anyone have any success with methotrexate? Thank you.
Hello Kim,
I am pleased your seeing a rheumo who's getting right down to sorting out what you have, instead of someone playing a guessing game.
I suffer with hypothyroidism (Underactive gland) which can go hypo at times which will make you lose weight...i'm taking Levothyroxine (Thyroxine) which is a synthetic form of thyroxine, a thyroid hormone replacement drug. where as Synthroid is one of the most popular medications prescribed for hypothyroidism, has both cornstarch and lactose as a filler.
I also have sjogrens like yourself and gland problems are always involved, kim if your not with our sjogren's site then i suggest you joining it as the discussions will help you in a large way...plus you can check the site out before joining incase you don't want to by the link i've added
www.sjogrenssyndromesupport.org
Terri :)
Thanks Terri. I will definitely join the group. I need all the help I can get.
Kim, if you join now i'll lose you in and start on the discussion from page 12 from when the site first started and also check on all the info about sjogrens at the top of the page :)
Kim said:
Thanks Terri. I will definitely join the group. I need all the help I can get.