Crest Will Simply Have To Keep up With Me.

I am a very active 57 year old lady who will not stop to play with this so called Crest issue. while it has slowed my pace I have not given in. I am looking to see what others have tried and maybe diet change. I also would like to know about some of the drugs others have used and if they had side effects as I do.
MightyMuse MightyMuse
56-60
5 Responses Dec 4, 2012

I was diagnosed in January 2015 at Cleveland Clinic with an interstitial lung disease that showed ANA marker for CREST. I was 64. I started with shortness of breath back in the summer of 2014. I usually rode my bicycle everyday about 15 miles per day. After going to the doctor who said my lungs sounded fine I was still experiencing shortness of breath. I asked for a chest xray which they said was pneumonia for 3 months. It wasn't! I am now on prednisone 4mg and am coming off of it in a few months. Also on Imuran to suppress immune system since its attacking my lungs. I keep going and am not as afraid as I was in the beginning. It does seem to be easing up some but I've had this tenderness in my fingertips fire a few years. I had to quit getting manicures because they were so sensitive. Just looking for others to connect with and tell be what to expect next or does it finally give up. Also I lost about 30 lbs last year and would be sick to my stomach smelling food, cologne, candles, car fumes. That still comes and goes but at least I can eat now and have picked some weight up. I'm on fb and twitter .

hi i have had all the various diagnosis that everyone seems to talk about, mine started 20 years ago when i was 40 after my dad died and i almost lost my daughter, normally something will trigger the autoimmune diseases, usually it is something that has drained you. i wont go into all the stuff, seems very much like everyone else but i do have a few comments. i am a strict vegan and for the first 10 years i continued training for marathons, mostly walking though plus was a senior exec in corporations requiring me to travel across country a bunch. about 8 years ago we moved to florida, the warmth helped some but i have been more exhausted the last few years. i cut back on working and cant train. i think, as the doctors do, that the vegan diet has helped a great deal, i use oriental treatments and do try to conserve my energy, but as with most of you the exhaustion is tough. this year the doctor said my thyroid and adrenals are not fx as well so they added meds for those, they have added 30 pounds in 6 weeks, i was pretty thin before and i know that doesnt help with the energy level

I totally agree with you! I am a very active 60 year old female who will not give this disease the power it needs to get me. I have been told that Chinese Herbs can keep this beast at bay. I am planning that route of treatment at this time.

Dear Mightymuse,
You have a great attitude which he crucial. My husband has crest and av lung and we were told he had a 70% chance to survive 5 years unless he was willing to get on a drug cocktail that would produce more side effects that required more pills for them and they had no idea if anything would actually work. This and go to UCLA and become a science project while spending $400 an hour to see a Dr there. This and be disabled, which they were happy to assist in the paperwork process. This was not acceptable.
We called a friend who is a Dr of Chinese herbal medicine who works with these kinds of cases and he said if we followed his instructions to the letter he would be ok. It has been 6 years and husband is still alive. We see him every 3 months, monitor the formula, get a chest xray every 6 months and there were diet changes he had to make. No coffee due to the roasting of the beans being a trigger, no dairy, no refined sugars. Eat small frequent meals, swimming, yoga tai chi chi gong are wonderful. You can find lists of the meds used for this online.If you would like his # I will send it to you. Good luck!

Hi Mighty Muse, I too have CREST, and I truly admire your attitude about it. You don't say what your symptoms are and whether you are in pain from in. I've seen several rheumatologists, and they prescribed PLAQUENIL. Although I haven't seen any benefit to taking it, I've spoken with and read about others who have some relief in taking it.
I am hoping to go to the Scleroderma Clinic at John Hopkins University early in the new year. I'm hopeful their cutting edge diagnostics and extensive knowledge of the many forms of CREST will present other management tools. I'll share what I find in my stories next year. You can find my stories under debicatlover.
Good luck with your continued journey with CREST. I hope you and your family have Happy Holidays.